Miss Mac

We've officially moved!

2009-11-27T11:23:00.001-05:00

Hey everyone... the blog has moved to HERE.

Don't forget to become a follower. ;o)

Blog Moving

2009-11-19T15:35:00.002-05:00

Sorry everyone for not keeping up with the blog. It feels like more of a medical diary and, to be honest, I'm getting burnt out on writing about the same things over and over and over and over.

SO!

I'm in the process of starting up a new "family blog" where I don't feel tied down to talking about Mac's medical progress. Don't get me wrong, I'm extremely proud of how well she's doing... but I think it's time to address her as budding toddler-to-be. ;o)

I'll post the new link and all that good stuff when it's finally up and running. I'm in the midst of training our new day nurse (yes, we finally found one!), so it may take a week or so.

See you soon!

Halloween - Then & Now

2009-10-31T13:05:00.006-04:00

Mackenzie's first Halloween (2008):
((And yes - that was a preemie size jack-o-lantern "costume"))

And Halloween 2009:
((Now in size 12mo!))

Lions and tigers and teeth... OH MY!

2009-10-29T21:27:00.004-04:00

Mackenzie has 4 teeth (2 top, 2 bottom) coming in and so far two have broken through. She's been a bit more restless than usual, and has been a *touch* cranky at bedtime every night... but aside from that she's handling it like a champ. Really the only time she turns into a major crab is when she's tired but can't sleep. We're alternating between Tylenol, Motrin, and Oragel depending on how ticked she is.

Next week we have some major appointments at UNC (all on the same day). We'll be seeing her ENT, pulmonologist, GI doctor and nurse practitioner, and her speech therapist (from UNC, not our local ST). We're planning to have some major Nissen talk since we're reaching the end of maximizing medical treatment for Mackenzie's reflux. The airway committee will discuss Mackenzie on Tuesday and offer their opinion, since Mac is on the airway team.

The GI nurse practitioner called me today and whereas we had originally agreed that I would wait until January (when Mac's bronch was scheduled) to finalize the Nissen plans, she is wanting to do things sooner -- which is a huge shock to me. The current plan is to have the GI doc, ENT, and pulmo all get together to do a rigid scope, flexible scope, and endoscopy all at the same time. That same day, the gastric motility people will place an impedance probe to measure how much Mackenzie is reflux (not just the acidity, but also the volume). Unfortunately that means Mac will be admitted into the UNC PICU for 24 hours. I'm very uneasy about this because of the vast amount of H1N1 cases in their PICU as well as Mackenzie being confined to a hospital bed. But I'm sure I'll just grind my teeth and go through with it. (Actually I know I will.)

Alrighty - here are some pics to enjoy... that I haven't posted on FB, for once! ;o)

Chasing the kitty...

Chasing the kitty some more... this time headed into the kitchen...

And Miss Mac all up on the TV watching Noggin (erm, Nick Jr now?) This was taken right before she started dancing to the song that was on. :oD

Trachiversary

2009-10-27T09:37:00.007-04:00

While it's only the end of October, I can't help but think we'll soon be on Mackenzie's one year trachiversary (the day she was trached - 12/12). We've gotten into such a rhythm with life that it's hard to remember days when Mackenzie didn't have a trach or when we didn't have to plan our day around it (or reflux!) It has really become a matter of making the most of your "free" time. Sometimes making the most of it is sneaking in a nap (I love those days), whereas other times it's running around cleaning up the messes you've made throughout the day... or even prepping for what's to come.

I've started looking through Mackenzie's old pictures from the pre-trach days, and sort of reminiscing about things. I came across this picture and it made me cry. (Okay, so I might be a bit emotional because Andy left for CA again and I feel a *tad* lonely.)

My all time favorite part of the day was snuggling Mackenzie to my chest. Every day I'd get to the NICU right before her noon feeding. I'd bundle her up and take her out of her isollette (and later her crib), juggling the wires from her leads and whatever respiratory support she happened to be on - whether it be a nasal cannula or nasal CPAP. We would cuddle together, chest to chest and she'd immediately fall asleep. And I'll admit every day I fought the urge to nap with her - partly from exhaustion, partly from the Reglan I was taking to up my breast milk production, and partly from just enjoying the sensation of cuddling with my Number 1. Because of how tiny Mackenzie was, there were limits on how long I could hold her. She would either get too cool from not being able to control her own body temp, or it would be too strenuous on her bitty lungs... so the max I could hold her was an hour. Some days she would last only about 10 minutes and other days she managed the full hour. (I'll even admit there were a couple days where we snuck to the hour and a half mark.) Either way, I was guaranteed to have drool on my shirt when I put her back in her isollette - sometimes a nice bit of breast milk/formula if I happened to be lucky that day.

I really miss cuddling with Mac that way. With her trach, it's impossible to simulate the same snuggle, although we've managed to modify it to work out.

Trach Care & Change Video

2009-10-24T22:14:00.002-04:00

Just a quick warning: The following video is a bit graphic, so I don't suggest you watching it if you're squeamish or have children around.

We taped Mackenzie's trach care and change tonight. She cooperated quite well until the end when she preferred to lay back and watch the Backyardigans instead of sitting up so I could finish strapping down her ties. Silly girl. :o) Typically we have to go a bit faster because she's not as relaxed and quiet, but when she IS behaving we like to be thorough and get all the yuckies.

Wow... it's been a while!

2009-10-23T06:39:00.002-04:00

Sorry I left things hanging. :o)

The appointment with neuro was a bit of a waste. As we expected (since Mackenzie didn't act up), the sleep study and EEG didn't reveal anything neurologically. We're back to a wait and see game. If the seizure-like episodes happen again, then we'll take her back to UNC have an ambulatory EEG placed before bringing Mackenzie home again. The neurologist questions if it may have been an autonomic event (comparable to a spasm caused by the autonomic system). So far she hasn't displayed any symptoms remotely similar to those she had in the past which is obviously a great thing.

On the bright side, Mackenzie lasted the entire sleep study on just her trach collar - without any assistance from the vent. Later that night (the night after the sleep study), Mackenzie was getting worn out - requiring a liter of 02 and had an increase work of breathing. BUT... it shows that if Mackenzie didn't have the apnea issues, she'd be ready to wean off the CPAP at night. It's great to see her lungs make such great progress. :oD

Mackenzie still manages to keep us on our toes. In one day her g-tube fell out twice and her trach came out as well. Of course, between the g-tube and the trach I freaked out more about the g-tube. ;o)

From a developmental standpoint, Mac's doing great. She's taken to crawling and attempting to follow me around the house. If she's in her room and I leave, she'll crawl to the baby gate and cry and if she's in the living room she'll cry and crawl to wherever she saw me go. And so the separation anxiety begins. :o)

Mackenzie has also started clapping. It's absolutely adorable. I must say, she has Daddy wrapped around her little pinky. When putting her to bed one night, Mackenzie started clapping and "talking" to Andy... so he let her stay up an extra half hour chatting back and forth. She's a smart cookie.

We're really pushing her with signing right now. She had her first language evaluation a couple weeks ago. The speech therapist preformed a nonspeech test (NST) and a receptive-expressive language test (REEL). The NST showed that she was about 66% delayed from her adjusted age and had the equivalency of a 2-3 month old for expressive communication, but for receptive she scored 0% delay with an age equivalency of 11-14 months. The REEL test showed a 100% delay (equivalent of 0 months) for expressive communication and 45% (5 month equivalency) for receptive language. We expected the "delay" in expressive since Mackenzie can't vocalize well with her trach, and most of the expressive questions related solely to babbling. While it looks bad on paper, it's completely expected and not a worrisome problem in the least. From my understanding, once she gets to the point of being able to sign (which would be right about now) then she'll be tested on her signs instead of vocalization. So I'm sure her next test in December will be a bit more easy on the eyes. ;o)

We cut back her speech/feeding therapy to once a month. We (myself, Andy, her case manager, and speech therapist) agree there's not much to be done on a weekly basis. Mackenzie's feeding progress depends on her GI status, which the ST can't control. We feel Mac has overcome her oral aversion and is refusing/limiting because of her reflux. From a speech standpoint, Mackenzie needs daily signing and an appointment once a week really won't help much. When Mac is able to tolerate a speaking valve, then we can increase the ST sessions.

Halloween Costume

2009-10-11T16:27:00.003-04:00

We're not planning to take Mac trick-or-treating, but here's a pic of her in her Halloween costume.

"It's all in a day's work, baby."

I hate sleep studies.

2009-10-10T07:36:00.003-04:00

Sleep studies are awful. I don't think I know a single parent who finds them remotely pleasant. They should name it the "non-sleep study".

Since the orders were for an EEG along with the routine study, the techs had to fit 21 probes on Mackenzie's head. For those of you who have never had a sleep study done before, they first dip the probe in a mixture close to the acrylic they put on your nails and place it on the scalp. They then dip a strip of gauze type material in a strong smelling adhesive and use high pressure air to dry it. It's quite terrifying for a kiddo but for kiddos that don't understand any of it, it's pure torture. Mac was screaming (yes, screaming), crying, thrashing... ugh.

But anyway...

We ran into a problem quickly after we arrived. Our GI nurse practitioner ordered the sleep study, so she had no clue about the respiratory portion of it. ((We definitely appreciate her writing the order and getting the ball rolling, though!)) The order was very unclear on what respiratory support Mac was supposed to get. The techs called the neuro who Mackenzie has been assigned to, who said she'd prefer for at least the first 2hrs to be off the vent (technically CPAP with back-up rate) but would leave the final decision up to me. I wanted them to get the most accurate data but didn't bring our mist compressor seeing as though Mackenzie typically doesn't sleep with it except for naps during the day. After trying to explain to the techs that Mackenzie canNOT sleep on her HME (the resistance is too much for her) and that it would throw off the study, they wanted me to let her sleep without any moisture source for 2hrs (in a cold, dry room). Absolutely not. I tried to explain what happens when trached kids don't get moisture (especially Mackenzie)... the pain, the plugging, etc. I think they would have understood better if I told them the earth was flat. :op Long story short(ish), they managed to get a mist set up to start off the study on. When I asked for clear parameters on when Mac will go on the vent (respirations, sats, tidal volume, effort, etc), they said "If we see anything troubling, we'll call the neuro and ask her." I told them in no uncertain terms that if I thought Mackenzie needed the vent I was putting her on myself and not waiting for a neuro - who knows zip about Mac - to make that call. Thankfully they understood where I was coming from and that I wasn't trying to be rude, just a *touch* protective.

As it turns out, Mac lasted the entire night on the trach collar and impressed me. Her respirations were a bit wonky (up into the 50s quite a bit) and her sats were all over the place, but she only had 2 desats into the mid to low 80s. Last night she took a nap at 7-ish and had some desatting and needed a liter of O2 for the duration, so she obviously was getting a bit tired, but she did terrific!

The big disappointment with the study is that Mackenzie didn't have a "nice" central episode. Typically if she has a big central episode on the vent (without a backup rate) her sats will drop to the 80s, on the trach collar her sats will drop to the high 60s or low 70s. I really wish they could have captured this like they did during the 1st study. A few months ago it was a 1-3 times a night deal, but lately it's only been every 3 nights or so. That's great progress and if we could get rid of it entirely I'd be really pushing to wean off the CPAP.

I won't find out the results until Wednesday, which is when we meet with the neuro for the first time. I'm interested to hear if they discovered anything that would explain the morning seizures. I'm also eager to talk to the pulmonologist about how well Mackenzie did without the vent and figure out a plan on how to get her off. I'm really hoping the central events are seizures. We could figure out a medicinal way of controling them and toss the vent out the window... and into the Apria van, of course. ;o)

So there we go. I have mixed feelings about everything and am extremely anxious to see how it all falls into place. I promised Mackenzie no more sleep studies for at least the rest of the year, and I'm going to do my best to keep that promise.

Warning Update Overload

2009-10-07T15:56:00.004-04:00

This will probably be a confusing post for those of you who aren't aware of the recent events, so I'll try to get to the gist of things.

A couple weeks ago we started Mackenzie on Elecare formula instead of her Enfamil AR in hopes of better controling her reflux. A few days after we started the Elecare, Mac caught a "nice" GI bug (vomiting, diahrrea, fever, the works). It started on a Wednesday and ended the same week on Friday. That Saturday morning, Mackenzie wasn't waking up and was very lethargic. At about 10am the nurse mentioned something wasn't right, so I got Mac out of her crib and stood her up on the floor. I could tell right away something was up - she wasn't focusing very well and seemed very out of it. Almost drunk. Within a minute or so of her standing, her eyes rolled back and she collapsed into me. I layed her on the floor to see what was going on and she held her arms in the air, but her eyes were closed and she wasn't responding to any stimulation -- I called her name, patted her stomach, rubbed her side, nada. She eventually snapped out of it and I called the pediatrician who told me to take her to the emergency department. The ED thought she had a slight pneumonia (based on a chest x-ray, which, I must say would be difficult to see a "slight" pneumonia with all the scarring from her lung disease). They gave us an antibiotic and sent us on our merry way.

This past Monday, Mackenzie had similar episodes. She was difficult to arrouse, she couldn't focus her eyes, wasn't responsive, would get very stiff and then collapse, slept for long periods of time, and so on. It started at about 8am and when she wouldn't snap out of it a 2pm, off to the emergency department we went. Mackenzie had a total of about 5seizures (or what we're all assuming to be seizures) that day. They did a CT scan which was fine, blood work was fine, chest xray was fine... so again we go on our merry way with orders to get a neurologist referral and EEG.

I had scheduled appointments Wednesday (today) with pediatric GI, pediatric speech, and the nutritionist at UNC to discuss the recent change to Elecare and the fact that it's made Mac's reflux 100x worse. (She's spitting at least 3x a day now whereas before we had her down to once a week.) With this and many other eating issues, I wanted to approach a nissen dicussion with the hopes of getting it on the books for her next bronch - which would mean in January, Mackenzie would get both a bronch and a nissen fundoplication. I described to GI everything that had been going on and she was immediately redflagged by the seizures.

GI calls the pulmonologist in and at first there was talk about admitting Mackenzie into the PICU to get an EEG immediately, but after seeing how great she looked they backed out of that idea. It was decided to get a sleep study and EEG done (the best way to get the EEG ASAP without admitting her), which we now have scheduled for tomorrow night. All nissen talk is being put on hold until we can get Mackenzie "cleared" of any neurological problems. If she does have any sort of seizure disorder, then I will recend the plea for a nissen since she'd be more apt to have complications post nissen.

Anywho, the pulmo is questioning whether or not the central apnea we discovered is actually seizures and we're all hoping that it IS seizure activity. If the apneas are caused by seizures, then with good medication we have a better chance of getting Mackenzie off the vent at night and decannulated.

From a GI and reflux stand point, we're keeping Mac on the Elecare a bit longer to see how things even out. We'll be using a farrel bag to vent her stomach during tube feeds and using vanilla flavored Elecare to coax her into eating orally again (something she's refused to do since we switched over). There's also talk of doing an endoscopy to look for any swelling in Mackenzie's esophagus due to relux, which might potentially stop her from eating orally. If there is swelling, then she'll be started on a low dose steroid to combat it. If they decide to do the endoscopy, Mackenzie's bronch will be moved up from January and scheduled whenever the first availability is.

So the next round of appointments are:
Tomorrow: Sleep Study and EEG (check in at 6:30pm at UNC)
Oct 14th: 1st neuro appointment
Nov 4h: meeting with ENT, pulmo, GI, and speech to go over progress and re-evaluate

In the meantime, Mackenzie's case will be brought up before the Airway Committe next Tuesday for any other input and advice on what to do.

Whew. Make sense? LOL

And for those of you who faithfully read every last word and have gotten to this point, here's a photo reward. ;o) They were both taken on Tuesday. I felt awful for Mackenzie's terrible Monday events, so I made sure to make Tuesday extra special by causing toy explosion. Enjoy and wish us luck!

Photo Comparison...

2009-10-03T13:30:00.007-04:00

Andy vehemently believes Mackenzie looks more like him than she does me, so I had to break out a couple pictures of me to compare them to Mackenzie. Just keep in mind that in the pictures I'm 1 and and Mackenzie is technically only 9 months (a year adjusted)so Mac has a bit more baby fat and I have a bit more hair. I'll agree that the overall shape of her head looks like Andy's, but her facial features and expressions are all me. (Those of you that have seen her in person will probably agree more.)

Happy October

2009-10-01T15:26:00.001-04:00

Ramblings of a mad woman...

2009-09-27T23:51:00.002-04:00

I think if anymore schtuff gets piled on my plate the title of this blog may have to changing to "The Ramblings of a Mad Woman".

For starters, Andy is out of the hospital and doing much better. He's officaly been diagnosed with diabetes so we're in the midst of some massive lifestyle changes. Unfortunately I know very little about diabetes so I've started educating myself and ordered a couple diabetic cookbooks since I now have absolutely no idea what to cook. (And keep in mind that I was just learning to cook anyway.)

Of course Miss Mackenzie isn't wanting to play nicely right now either. She had symptoms of a GI bug on Thursday, but on Saturday she had about 5 episodes of what closely resemble seizures. After a call to the pediatrician and a trip to the ED, the issue pretty much got blown off by the doctor in the ED. We were sent home with oral antibiotics for "slight pneumonia". I'll be calling the pediatrician again on Monday and hope to get her seen again (the pedi saw her on Friday), or at the very least an order for labwork and get her in to the doc on Tuesday if they don't have any availabilities.

I'll update as things progress, as always. Now I should really get some sleep.

Photo Teasers

2009-09-23T07:47:00.002-04:00

Andy's finally home from the hospital. Yay! He was discharged on Sunday but still isn't feeling too hot. I got him in at the doc's yesterday and there's debate about whether or not Andy's diabetic. All of it is super confusing, but I'm sure it'll get figured out. I'm just glad to have him home and feeling better.

I've started to edit some of the photos from the Birthday/Biltmore trip. It may take a few days. ;o) Here are a couple teasers to keep everyone satisfied until I can get the rest done.

The first is a very tired Mackenzie after our Saturday trip to the Estate. She crashed as soon as her head hit the carseat. The second was taken in the greenhouse at the Garden. It was our favorite place (we actually enjoyed it more that the house).

Quick Update

2009-09-19T13:43:00.002-04:00

Hi everyone. :o)

Sorry it's taken so long to update! Unfortunately it won't be much of an update either, as Andy is in the hospital with pancreatitis and has been since we arrived back in town. Loverlee. Poor guy. :o( Andy's doing much better, though and we hope to have him home sometime in the upcoming week. He's trying to master liquids after spending the past several days NPO. Then he'll move on to semi-solids and finally solids before getting discharged. So I'm juggling my mornings visiting him, coming back home to Mackenzie, and heading back to the hospital at night. Thank goodness for nursing! Although I have to say there's something entirely comical about giving your daughter a bath and then heading to the hospital not even 2 hours later to help your significant other shower. Andy was more of a baby about it than Mackenzie! ;o)

Mackenzie's birthday went great. The Biltmore was gorgeous and Macenzie really enjoyed the trip. She wanted to grab at everything inside the estate which was hilarious but also one of those "nononono!" moments. We enjoyed spending time with just the three of us. :o)

And of course Miss Mac made out like a bandit. Between Andy and me, my mom, my dad and his wife, and our day nurse... oye. I've resorted to cramming toys in every nook in Mackenzie's room. lol Perhaps it's time to convert the spare room into a play room? (Kidding! For now.)

I have TONS of pictures (over 300) to update with, but I just need to find the time to sort and upload them all. --Don't worry I'm not going to upload all 300, although I may put them on a flicker account--

Has it really been a year?

2009-09-08T18:43:00.000-04:00

I decided to look back over some of Mackenzie's "old" photos. (Because I don't have a million things I need to do to prep for our trip.)

Lots of memories, lots of tears, but also lots of smiles.

This is one of my favorite pictures of Mackenzie. It was taken when she was 3 days old, weighing a wopping 1 pound 7 ounces. That was the same day her eyes opened for the first time, as they were fused shut at birth because of her gestational age. It also marked the first day she squeezed my finger. :o)

Growth Percentiles

2009-09-05T21:30:00.004-04:00

Out of curiosity, I googled a few growth charts to map out what percentiles Mackenzie's in. Mackenzie's 27 inches long and almost 18lbs (only a couple ounces short).

Growth Chart A:
As a 12 month old: below 5th percentile for both
As a 9 month old:: Length 25th percentile and Weight 25th-50th percentile

Growth Chart B:
As a 12 month old: Length below 3rd percentile and Weight at 5th percentile
As a 9 month old: Length 23rd percentile and Weight 29th percentile

She's doing great. :o) She's grown almost 10 inches since being home, which is terrific. One of her specialists the other day (I can't remember which one - either ped GI or ped surgeon) was happy to see her on the charts since she was so tiny during her first visit post-discharge.

Gosh I'm just in awe. She was born at 1 pound 11.5 ounces and a year later she's almost 18 pounds. And to go from being 12.75 inches at birth to 27 now... goodness. It makes my heart smile. :o)

One week and counting down!

2009-09-04T16:08:00.001-04:00

We leave in a week!

Hurray!!!

I've already got it set up that the DME company will be delivering an oxygen concentrator and 3 E tanks to the hotel. We'll only bring 2 with us. I think that's plenty since Mac's rarely on O2.

Now to pack everthing. :oD

Packing List

2009-09-02T16:40:00.004-04:00

I started working on the packing list for Mackenzie's things. We extended the Biltmore trip an extra day so we'll be leaving the house on Friday (the 11th) at 11am and staying through Monday (the 14th) at 11am. Andy arrives home from CA at midnight on the 10th (technically the 11th), and he's going to wash all his clothes ahead of time so his things will already be packed. That leaves just my things and Mackenzie's.

Anywho, here's the list so far of Mac's stuff. For trach parents who read this, please feel free to remind me what I'm forgetting. :o) Well, that goes for all parents really. Oh, the pulse ox supplies are already in the Go Bag (2 extra probes, tapes, and posseys) so you won't see those on the list.

Feeding
1 can powder formula
5 cans ready made formula
measuring cups
measuring spoons
2 quart pitcher
2 15oz pitchers
blender
60cc syringes (x3)
4 zevex bags (not including 1 in use)
2 extensions (not including 1 in use)
5 nuk bottles (4 filled w/day feeds)
1 avent bottle (filled w/nursery water)
4 playskool bottles (2 filled w/night feeds)
pure & clear detergent
scrub brush
1 gallon bottle nursery water
warming cup

Potty
40 diapers
4pk baby wipes
bum cream

Bathing
8 chux pads
6 wash cloths
2 lg bath towels
2 baby towels
soap
lotion
green cuppy
brush

Suction
both suction machines
1 extra tubing set (we keep one in the go bag as well)
40 caths (not including 10 in the go bag)
10 little suckers
1 extra canister set

Vent & Mist Collar
2 vent circuits
2 omniflexes
4 bottles sterile water
portable vent (duh)
vent heater and bottle (duh)
heater wire (duh)
mist compressor (duh)
1 mist bottle
1 O2 port
1 water trap
6 link set of corregated tubing (x2)
2 trach guards
10 HMEs (not including 5 in go bag, 3 in purse, and 2 in diaper bag)

Meds
portable nebulizer
2 neb kits
8 pulmicort respules
1 box xoponex respules
4 vials NaCl
1ml sterile syringes (x20)
10ml sterile syringes (x4)
4 blunt tip cannulas
4 syringe tip connectors
10 alcohol prep pads
10ml clean syringes (x10)
7 premade doses of lasix
7 premade doses of KCl
7 premade doses of PVS
10 premade doses of erythromycin
10 premade doses of miralax

Trach and Mini Care
4 kits containing:
**pack of 2 sterile q-tips (x2)
**1 pack trach ties
**1 pack sterile 4x4
**1 pack sterile 2x2
**1 pack cover sponge
**1 saline bullet

Clothes
4 sets PJs
6 cool weather outfits
6 warm weather outfits
8 pairs of socks
sweater
shoes
2 thick blankets
2 think blankets
5 receiving blankets.

Misc
1 box med gloves
clorox wipes
germ x
soft soap
Tallulah
toy phone
ring stack
vtech laptop
chewy tube
((other toys))

I'm going to have my day nurse take a look at the list and see if she can think of anything that's missing. We're only going to take one O2 tank with us, since we're having our DME company deliver an oxygen concentrator and 2 extra tanks to the hotel when we arrive. They might even be able to deliver mist compressor which would be super great. I'll also have the Go Bag stocked with emergency supplies (including trahcs).

All I have to say is thank goodness we have a mini-van. I'm not sure if we can fit everything in the van with the 3rd row seating in. If we have to take the 3rd row out (darn not having stow-n-go seating!) then I'll take the stationary vent & stand. We're trying to avoid that because that 3rd seat is heavy!

Woohoo!!! I really cannot wait to go. **cue happy dance**

Schedule Frustration

2009-08-31T21:55:00.002-04:00

I was thinking back over the appointment with GI and the changes that were made... and then I started thinking of Mackenzie's daily schedule and how it will be affected. I feel like the entire day is spent treating her reflux and it's becoming more and more difficult for me not get upset at the loss of opportunities for her. Her day is packed with meds and feedings that take an hour to complete.

Here is how her schedule will be from now on...

7am -- continuous feed ends
8am -- prevacid and pulmicort breathing treatment
9am to 10am -- 80cc feeding, meds: lasix and sodium chloride
11am -- 30cc of water, meds: erythromycin and miralax
12pm to 1pm -- 80cc feeding, meds: poly-vi-sol, pottasium chloride
2pm -- 30cc of water, meds: erythromycin and miralax
2:30pm -- baby food
3pm to 4pm -- 80cc feeding, meds: sodium chloride
5pm -- 30cc of water, meds: erythromycin and miralax
6pm to 7pm -- 80cc feeding
8pm -- prevacid and pulmicort breathing treatment
8:15pm -- bath and trach care
9pm to 10pm -- (in bed for the night) 80cc feeding, meds: lasix and sodium chloride
11pm -- continuous feed begins
11:30pm -- meds: poly-vi-sol, pottasium chloride

From 11pm to 7am, she has to have formula added to her feeding bag and suctioning every 2hrs.

Here is how I feel... I'm spending more time treating her reflux than I am allowing her to naturally develop and explore. While taking an "on a whim" trip is a bit difficult for a child with a trach, the trach + ridiculous reflux makes it virtually impossible. She's literally glued to the feeding pump 13 hours a day... that's over half her day!

I don't even want to add up how many cc's of total meds she gets a day.

I know that nissens aren't fool proof. I know they can go wrong, I know they can cause complications... but at this point what good are we doing for Mackenzie's development if we schedule out literally every single hour of her day to managing her reflux?????

It's official. I've become jaded.

2 Weeks!

2009-08-31T13:08:00.003-04:00

Just under 2 weeks until our Miss turns one. Oye... there were moments where I didn't think we'd get to this point. What a beautifully crazy year it's been. :o) I truly wouldn't trade it for anything in the world.

We had a GI appointment in Raleigh today. It went well - more meds, change in formula... just what I was anticipating. In November we'll re-evaluate to see if she needs a nissen (stomach wrap for her reflux) as we're maxing out her meds now. I'm a little frustrated because I'm very anti-meds. It can't be healthy to be on as many meds as Mackenzie's on, and I feel like at this stage in the game we should really be focusing on weaning her off meds as opposed to throwing in more. BUT... if the meds can eliminate the need for a surgery, I suppose that's our trade off.

Anyway... bring on the family vaca!! What a wonderful weekend we have planned!!!

Pic Funnies

2009-08-29T07:00:00.005-04:00

These were taken with my cell so I apologize about the quality!

Yummmm

Reading a magazine.

The morning of her bronch. Mackenzie was NOT happy. I'm not sure if it's because it was super early in the morning or if she just wasn't digging the hospital gown. Hmmm...

Post bronch. Mac slept the entire day away. (She wasn't as slouchy as this pic looks - it was a bad angle so I could fit her in the entire pic.)

This is what happens when you fall asleep mid thumb-suck.

I think she was a little too tired for her sippy cup. Maybe? Just maybe.

AMT Mini One

2009-08-29T06:26:00.007-04:00

Mackenzie's MicKey button had been producing ttooonnnsss of drainage. We were changing the drain sponge around it 2-3 times a day, whereas before we only had to change it once. The site was becoming super red and irritated and I decided to take her to UNC to the peds surgery team to have them assess what's going on. We saw our usual nurse practitioner and she thought it was a dual problem - the balloon probably had a slow leak (as I had put 5cc of water in it 2 or 3 nights ago and it had gone down to 4.5cc when we were there), and that the size was a little too small.

The last time we were there I had asked about switching Mackenzie over to the AMT Mini One. It's very similar to the MicKey but smaller, a lower profile, and supposedly better quality. It was mentioned by another trach parent and after researching it, I liked the concept of it. So the nurse practitioner that we see just happened to have got in a shipment of the AMT Mini Ones the day before yesterday (talk about luck!) so we made the official switch.

I'm diggin' it!

It's much smaller and really barely noticiable if it weren't for the 2x2 drain sponge. It's also harder to latch the extension tube to, so there's less risk of it "falling" out. I don't know how many times the crazy extension tube came out and I didn't notice until the bed was completely saturated in formula. :o( The nurses are getting the hang of it overall I think it'll work well.

Here's some "then" and "now" pics to compare.

THEN: This was the day after Mackenzie had her MicKey placed, so ignore the irritation and stitches. The extension piece is already attached. Otherwise the little silicon flap you see would fit in the key-hole and "close" it.

NOW: Here's the AMT Mini One this morning, again with the extension already attached. I'm not a huge fan of the extension piece that came with the Mini, but we can use the MicKey extensions on it so it works out wonderfully.

Oh... and here's a pic of Mackenzie's latest accomplishment - standing! She's just starting to get the hang of it and is super wobbly, but she loves practicing. :o) This is her over at my Dad's house right before she took a nice fall and bonked her head. Poor thing. She's quite funny about practicing, though. I usually stand her infront of me while I'm sitting and let her hang on to me. I'll start chanting "Go Mackenzie go, go Mackenzie go!" and she'll beam a great big, proud smile. Then, of course, she collapses into a fit of giggling. ;o) How did I get so lucky??

(PS on that last pic... those are supposed to be capris but they fit great as pants!)

Andy's not allowed to leave anymore.

2009-08-27T12:58:00.003-04:00

Why is it when Andy leaves, there's always a ton to do? Stinker.

Friday is a trip to UNC for peds surgery (Mac has a lot of nasty drainage around her MicKey button and I'm thinking it might mean she needs a bigger size).

Saturday and Sunday I canceled our day nursing. Saturday I plan to enjoy Mac all to myself and Sunday I'll be taking her over to my Dad's.

Monday is a trip to Raleigh for GI. Hoping for some big changes that go over well.

Wednesday is in town, an appointment with her cardiologist.

I think I'm going to start packing for Mackenzie's birthday trip so I'm not stressed out the closer it gets. Only 16 days to go! I think? lol

Aaaannnndddd I'm ready for a nap. :o)

Bronch Update

2009-08-25T13:43:00.003-04:00

The Positives:
The flexible and rigid bronchs went really well. Mackenzie was breathing on her own through the entire procedure(s) and only required a bit of oxygen. Go Mackenzie! Many of you know how terrified I was of this bronch setting Mac back (hah that rhymed) from a respiratory standpoint. She's definitely proven that she means business and is going to keep moving forward.

Her subglottic hemangioma is involuting - yay! Right now it's estimated to take up roughly 70% of her airway. The hemangioma is behaving exactly like we anticipated, so that's terrific. I have a picture that I'll have to scan soon of her airway and what it looks like. I'll also have to dig out the first picture to compare.

The Negatives:
I was hoping this bronch would reveal a magical answer as to why Mackenzie was having apneic episodes. Unfortunately, we didn't get any. I talked with the trach nurse this morning and the thought is now that they are truly central apnea episodes as opposed to being secondary to "something". The current plan is to keep Mac on the CPAP with back up rate until she outgrows the apnea. We were told the mystical age is typically 3 years. The good news is that Mackenzie is recovering on her own from the episodes, but without the breaths to kick in she has extremely nasty desats -- hence the back up rate as opposed to a set rate.

I took the news a little hard. (I'm sure it didn't help that Andy left for CA again this morning.) While Andy and I had planned for several years of Mackenzie being trached, I still had a lot of hope banking on it being a quick, temporary situation. To now know we have at least 2 more years to go, I was a bit disappointed. Another trach mom commented that the reason a child was trached isn't always the reason they stay trached, and that's certainly ringing true for Miss Mackenzie.

BUT! It's all going to work out. It's not the end of the world and while yes, it's disappointing and we all wish things were a little different, I know without a shadow of a doubt we can do this for as long as it takes.

She's a shoe girl.

2009-08-23T23:08:00.002-04:00

We got into Chapel Hill around 4:30-ish. After checking in to the Ronald McDonald House and dragging some of the equipment in, we took Miss Mac to the gigantic fish tank for her to see fish for the first time. She was trying to grab them through the glass and the fish weren't too happy about that. We have a nice size room at the RMH and fit the equipment in with no problem at all. It looks to be set up as one of their handicap accesible rooms. Andy mentioned that the smell of the house reminds him of Christmas time, since that was when we were here the first time. :o)

We took Mackenzie to the gigantic Babies R Us down by South Point. Instead of loading up her double stroller like we usually do, we just grabbed her, the suction, and the go bag and left the rest in the van. I carried her and Andy put the go bag and suction in a shopping cart. It worked out great. I do have to say Mackenzie is definitely a shoe girl. Out of all the things in BRU to reach for, it was the shoes -- and only the shoes. Colorful toys, no. Bright clothes, no. The shoes did it for her. I'm more into purses and wear flip flops year round, but hey... I can handle a shoe addict. ;o) We ended up getting her a brown pair of loafers to go with her outfit tomorrow. I forgot my digital camera at home, but I'll try to take a few good pics on my cell.

We've been taking Mackenzie off her pulse-ox more and more. As long as we're with her and watching her, chances are we would respond faster to her desatting by visual cues than waiting for the pulse-ox to go off. Plus she hasn't needed oxygen while awake and active in a fairly lengthy amount of time. We put the probe back on when she's napping and if we have to leave the room for anything... and of course anytime a nurse is there. But anway, I never quite realized how tense you can be just because of a certain noise. When Mac is awake and the alarm goes off, 99.99% of the time it's a false reading because she's wiggling around. Even though I know it's not right, I guess I must tense up from it because now that I don't hear it as often I feel more relaxed. Crazy. It also makes things a lot easier. I'm not constantly having to worry about the probe wrapping around any limbs or getting caught on things... In 11 months this is the most time she's spent being cord-free and I love it. It gives me (us) a lot to look forward to. :o)

Mackenzie's scheduled check-in time for tomorrow is 6:30am. Bright and early! I think as long as we leave here by 6 (the hospital is only a few blocks away), then all should be fine. We're not going to load up the van until things are finished and we're ready to head home.

Alrighty... time to do some cat napping. :o)

Mackenzie and Tallulah

2009-08-20T14:35:00.003-04:00

Here's a pic of Mackenzie's newest friend Tallulah. Lulah is Mac's trach buddy. :o)

Appointment Update

2009-08-19T21:39:00.003-04:00

Mackenzie had her first GI appointment yesterday in Raleigh and a 3 stage pre-op session today at UNC. We're all exhausted, to say the least. I hate when appointments are back to back like that (and not on the same day), but there wasn't really any getting around it this time.

Starting with GI - a lot of questions were raised and treatment options mulled around. Right now they're on hold until after the bronch to see what her airway looks like. The GI nurse practitioner that we saw (who was terrific, btw) is trying to get a physician to do an endoscopy at the same time as the bronch on Monday but we're not sure how that's going to pan out. She said if she can't find someone, it's no big deal because she doesn't feel that would change the treatment anyway. More than likely what will happen is we'll be switching Mackenzie's formula to a pre-digested one like Enfacare or Neocate. Then there will be some tinkling with meds. They can either decide to increase Mackenzie's prevacid to 15mg twice a day (right now she's on 7.5mg in the morning and 15mg at night because her pulmonologist boosted her up), or they can add Zantac into the mix. I'm fairly confident they'll also add a gastric emptying medicine similar to reglan (with less side effects). I was told that if she is going a day without stooling to give her milk of magnesia (not looking forward to that) to keep up the mobility of her stomach. Right now there's no definite answer to if Mackenzie needs a nissen fundoplication or not. Based off of the drastic differences in Mac that we've seen from the volume/med changes already, I feel pretty good with the idea of maximizing meds. I don't feel like we're wasting our time in doing it. Always good. :o)

SO! On to today's fiasco... that took forever, btw. The 3 stage pre-op basically consisted of talking with a ENT resident and signing general consents, then the ENT performing the bronch, and finally the "pre-care" team and anesthesiologist. We also got to see the trach nurse (we also do - I love her), a social worker (routine), and the NICU case manager who helps me book appointments (another person I love).

The forms with the resident were no big deal. The typical "can we give blood" and "can we resuscitate" statements. I wasn't too impressed with the resident, although I never am. I think it's less of a problem with them and more of a problem with me - I know they can't answer my questions, so I rather not be bothered. It sounds harsh, but has proven entirely true... and when you get to the point of having to coordinate different specialists and that sort of thing, all you want to do is talk to the person with the answers.

Now what I didn't expect in signing the forms was the huge wave of emotion. For some reason it took me back to the very first bronch where Mackenzie was trached, and the memories started flooding in. I joke about it quite often how I gave verbal consent to the trach without a second thought, and how the term "rare" was thrown around to describe circumstances that would involve a tracheotomy... but every so often I guess you get thrown back in time to the emotional intensity of the situation. I'm very grateful those moments are becoming less and less frequent, but the pain doesn't seem to dull much.

The chat with Mackenzie's ENT went a lot better than I was anticipating. I've heard rumors (we all know how much we can trust rumors) that he's "pull happy" with the trach... and for some reason my irrational fear was that he would pull Mackenzie's trach not realizing she needs the CPAP (and back-up rate) at night. I don't know why I even thought he would do that, but it was a huge fear for me. We talked about Mackenzie getting upsized and that I didn't want him to do anything to the hemangioma. He agreed that waiting was our best option and that if we get to the point where Mackenzie's off the CPAP but the hemangioma is still there, we can address treatment options then. I asked what his policy was with regard to decannulation because I was recently told that this particular ENT didn't believe in seasons. ((Basically most ENTs will not decannulate a kid during the winter because of the risk of infection and the child not being able to manage their secretions. Also most ENTs require a child to make it through one winter successfully before being a candidate for decann.)) He told me that he wouldn't pull her trach during the winter, and that typically they do want the child to go through the winter but if a child was ready, in every sense of the word, during the spring that they'd have to decide if waiting essentially another year would be better than decannulation during the summer.

What I, personally, got out of this is that next year will probably not be "our" year for decannulation. Running over the time in my head, Mackenzie would have to be off CPAP by March-ish and be doing swimingly at it. With her using the back-up rate on her vent multiple times every other day and us still not knowing the cause of her apnea episodes, I'm not getting my hopes up for it. Obviously it's entirely plausible and I'm not ruling it out as an option... but with something that life-changing and emotionally charged, I'm not going to bank on it. I think most trach parents feel the same about their child's decannulation plans. You'll believe it when it happens. And even when you see your child with a naked neck, there's still a lot of doubts.

Moving on, we met with the "pre-care" team and went over the nitty gritty on when to stop feedings, what meds to hold, etc. I guess they're not used to children on continuous feeds at night because there was a lot of question when to stop Mac's feeds. I also requested the anesthesiologists give Mackenzie an inhaled anesthesia before initiating an IV. I told them she was a super hard stick, and the less trauma the better. The guy said it wouldn't be a problem since she has a trach and they can stabilize her airway easily. If things go the way I hope, she can be knocked out and not know a thing until she's in the recovery room.

Sunday night, Andy and I are taking Mackenzie to Chapel Hill and either staying at the Ronald McDonald House there or getting a hotel room for the night. More than likely it'll be a hotel room because I don't see us fitting in any of the rooms at the RMH. So we'll stay the night in Chapel Hill, have her bronch Monday morning, and head back home after she's finished recovering.

Right now, I think I'm more afraid of the recovery than the procedure itself. I exponentially trust Dr. Z (the ENT). What I'm terrified of is Mackenzie taking a huge step back respiratory wise. This will be her first bronch where she hasn't been on SIMV ventilation. I'm nervous about her waking up and being too groggy to maintain her breathing. I don't know why, but I just have this paranoia that she won't recover well from the anesthesia and she'll be admitted into the PICU because they can't get her off. Surely it has to be unlikely, but it's one of those nagging fears that I have.

On a different note, I happened to run into a trach/vent dependent family that we met in the NICU. I was surprised to see them, and their daughter is doing so well. :o) The last time I ran into them was in February when Mackenzie was in the NICU at UNC and they stopped by for a visit after being discharged. I lost their phone numbers a while back and I've been meaning to see how they were doing so it worked out great. Gah, I can't believe how great their daughter looked!

I also had a former trach mom approach me. Her son is 5 now, and when I first saw him I thought I saw a sunken trach stoma but didn't want to be rude and ask. Thankfully she started the conversation and told me that he was trached for 2 years and was vent dependent. We chatted quite a bit about the roller coaster of having a trached child, and she cried. Seeing Mackenzie's equipment brought back a lot of memories for her and had I known the woman better I would have given a gigantic hug.

Anywho, this is where we stand right now. I'll update more after Mac's bronch!

Booked!

2009-08-16T18:23:00.002-04:00

Nothing too exciting is going on over here. That's always great news. ;o)

After a few hours of hashing out details with the people at the Biltmore, I finally managed to book the trip. We were running into space issues since we'll be bringing all of Mackenzie's equipment, and trying to find a hotel with enough space was a bit interesting. In the end we found one that had a king suite available and is 10 minutes from the nearest hospital. If we can't fit her pack-n-play and vent in the room, then we can have her in the living area and one of us can sleep on the sleeper sofa. There looks to be plenty of room and I think it'll work out well.

I've been finishing up birthday shopping and am waiting on a few items to arrive - one being her Melissa & Doug Alligator Walker and the others being cool weather outfits for Mackenzie. The average in Asheville is supposed to be 75, so it can really go either way with the mountain air.

The closer we get to Mac's bronch the more I don't want it to happen. I hate the idea of sending her into the OR without being by her side. I also know that even if the bronch shows her hemangiom has shrunk, she still needs her trach because of the CPAP at night. And, unfortunately, it doesn't look like we'll be getting rid of that this year.

Developmentally Mackenzie has made terrific progress. As I've said before, our main goal for her was to have her sitting unassisted by her 1st birthday. Check that baby off the list! :o) She's sitting beautifully and was wonderful posture. Mommy and Daddy could definitely take a few notes. We've moved on to standing and crawling. She doesn't seem very keen on the idea of crawling, but she loves to practice standing. I think within the next month or two she'll be standing with a little support of something to hold on to, but that's it. Her feet are nice and flat and she keeps her back straight, although she likes to stick her toosh out. :op Silly girl.

I'll be doing a picture update soon, so just keep your eyes out. :o)

Learning to cook

2009-08-12T21:49:00.002-04:00

Everything's going super here! Andy got back into town on Sunday evening. He wasn't supposed to be home until the 21st but they sent him back early and we're certainly not complaining. :oD

Now that I have help, I've realised just how exhausted I am. I can actually take a minute to myself and I realize I'm comparable to the walking dead. Oh so tired. Well it didn't help that our nursing was wonky over the weekend. Sunday night the agency canceled our nurse but didn't replace her, so I stayed up until 2am waiting for a nurse to arrive. Then I was up again at 6 because our day nurse called out - surprise surprise.

I had to cancel all our appointments this week to figure out what's going on with Miss Mac. Her respirations and heart rate are up (and sats down) while she's sleeping... but otherwise she's okay. The pediatrician and I believe that she's outgrown her trach and needs to be upsized. So in the meantime I've been having her occasionally nap on the vent to ease her work of breathing. It's nothing terribly distressing, but not Mackenzie's norm. I was afraid it might be tracheitis (she had a few yellow secretions thrown in the mix), so I didn't want to take her all over 3 days in a row and run her down before her bronch. GI has been rescheduled for next Tuesday and the cardiologist and optomologist won't be until September.

In the meantime, Mommy is learning to cook. :o) Those who know me well know that I'm a terrible cook... except for baked ziti. (That's how I tricked Andy into believing I could cook - poor guy!!) Last night I made lemon chicken and tonight was teryaki chicken. Tomorrow is spicy pork chops. I'm kind of excited. I now know what egg noodles are and where to find them in the grocery store -- near the spaghetti for those wanting to quiz me. And today I discovered "evaporated milk" - who knew it existed? Major thanks to my bestest pal Nessa for coaching me through it. On the menu for the rest of the week is burgundy roast, cola ham, and another random chicken dish since we're all about chicken here.

Playing Sleep Catch Up

2009-08-06T21:55:00.002-04:00

I swear I've meant to update sooner, but I'm still trying to catch up on my sleep.

Sunday night we had a fill-in nurse, as our usual night nurse works Monday thru Saturday. I won't go into too much detail (aside from mentioning this "nurse" didn't know what the term "desat" meant), but some stuff happened and I fired the nurse on the spot. I told her to call her husband to come get her and she could wait in the living room. It was the first time I had ever done that, and I was furious I was shaking. Mackenzie was sick (triple tracheitis going on - happens every month), so I stayed up with her after having gone the day without a nurse as well. I ended up staying up 27hrs straight without a wink of sleep, and then only got about 4 and 1/2 hrs. My body is still trying to catch back up.

The good news is Mackenzie's feeling much better. She was on an inhaled antibiotic called Tobramycin. It's notorious for drying out the lungs and of course it did. Sunday night I was doing Xoponex nebs every 4hrs with saline nebs in between. We've been able to cut back to the occasional nebs, mostly at night.

More good news... Mackenzie's doing fantastic with her oral feeding. Yesterday she took her entire 6pm feeding by mouth. Afterward she looked stuffed and urpy, but the fact that she tried was awesome. She's also being more open to baby food. She doesn't quite open wide for the spoon every time. Infact, she seems to have gotten into a habit of sucking the food off the tip of the spoon. Interesting. :o) So far the 3 flavors that have gotten a thumbs up from Mackenzie are: (1) Peach, Oatmeal & Banana, (2) Vegetable Turkey Dinner, and (3)Summer Vegetable Dinner. The jury is still out on Bananas, Peaches & Raspberries.

Next week is another busy week with appointments for GI, cardiologist, and optometrist on three separate days. At least 2 are in town. :o)

We've decided for Mackenzie's first birthday we're taking a 3 day trip to Asheville and visiting the Biltmore. I found a pretty good deal online with a swanky hotel in the area, and I've heard great things about it. I just need to call and get the kinks worked out and locate the nearest hospital. It's going to take quite a bit of planning and but I think it's definitely going to be worth it. We're not entirely sure if we're going to venture taking her to a restaurant for her birthday dinner (I like the idea of having the waiters sing to her - hehe) or if we'll just celebrate in the hotel room. We'll get it figured out. :o)

Alright. I'm off to get some sleep. I'll try to update more often.

Oye what a hectic few weeks. :o)

2009-07-29T17:18:00.002-04:00

I thought I was going to loose my mind for a little while there...

Andy left on the 12th (Wednesday). The next day (Thursday) my day nurse called out and Mackenzie got sick. Friday we took her to the pediatrician. Saturday & Sunday no day nurse. Monday pediatrician again. Tuesday day of errands that took for-e-ver to complete. Wednesday UNC. Thursday rest. Friday UNC. Saturday rest. Sunday & Monday no day nurse. Well... Andy was supposed to get back from CA this Friday but he's going to be stuck out there until the 21st of August. Loverlee, right? I've already said goodbye to my insanity. ;o)

August has gotten pretty packed with appointments too. The 12th is her cardiologist, 13th optomologist, 18th GI in Raleigh, 19th pre-op at UNC, and 24th bronch at UNC. I'm going to try to cherish the next 2 weeks without appointments. ;o)

SO! Wondering how our trips to UNC faired? Quite well, actually! The swallow study revealed that Mackenzie isn't aspirating while eating, but we know that she's aspirating while refluxing. And the study showed she was refluxing on the drop of a dime. So the theory was made that Mackenzie didn't want to eat by mouth because she was in too much pain throughout the day. We've since (with the guidance of 2 nutritionists at UNC) upped Mackenzie's calories to 24 per ounce, and decreased her volume. The pulmonologist also increased her prevacid from 15mg at night to adding 7.5mg in the morning. So far it has made a HUGE difference with her oral eating. She's not only slirping happily on her sippies (still not quite the entire feed but has taken as much as 55cc when the total feeding is 80cc). She's also progressing with baby food! I initiated it again a few days ago because she was tolerating her dry spoon so well. :o) It definitely has to be on her terms, and she prefers to grab the spoon and push it in her mouth but hey I'm not complaining. ;o) The most she's taken is about two baby spoonfuls, but that's TERRIFIC!

As for her apnea episodes, her pulmonologist doesn't feel it's a true central apnea and moreso a secondary to something... it's just a matter of figuring out what that "something" is. Could be reflux, could be a problem with her lungs, etc. After the nutrition change, I thought for SURE it was reflux induced because she had managed to go an entire week without an episode. Last night she decided to have 2. :o( But we shall keep an eye on things and hopefully her bronch can shed some light on the issue. As for now we're still in "wait and see" mode.

Mackenzie has officially began using her upper airway. We tried a Passy Muir Valve (speaking valve for those with trachs). Her pressures were a bit too high for the moment, but we'll have it remeasured next month and try again. In the meantime, she's getting rather vocal on her own with grunts and whines (and cries!). I had to turn off the Low Minute Volume alarm on her vent (no worries an RT with our DME said it was fine as long as her low pressure alarm was still on) because she had decided to breathe out her nose while sleeping. It was sounding off the vent every few seconds and after a full night of it I couldn't take it anymore. Every night we turn it back on to see if she's stopped, but sure enough she likes to breathe out her nose now. 'Tis a GREAT sign that the hemangioma is shrinking.

She's also sitting unassisted fairly well! I think today she went about 20 minutes before getting tired. A little wobbly, but doing well! She's an absolute ham about it, though. ;o)

Alright... I'll have to write another update later. The Miss is beckoning for me to come play... and what Mommy can resist?!

Girls just wanna have fffuuuunnnn.

2009-07-22T21:20:00.004-04:00

Those of you on facebook have already seen this pic, but I figured I'd share it with the blogger world. Yesterday Mackenzie and I decided to throw on our high heels, grab our purses, and head to the beauty salon. ;o) Fiona from Chic Baby Doos did her hair flip. It's the hottest craze now. Mackenzie texted all her girlfriends to let them know.

This may be one of my favorite pics of Mackenzie. I love her dainty little pinky!

Exhausted beyond belief.

2009-07-22T21:02:00.002-04:00

I discovered today how a person can fall asleep while driving. I seriously did not think I'd make it the drive home from UNC, and had it been just me and I was on a road trip I would have pulled over for nap. I had to blast the AC as high as it could go and shift in my seat every few minutes.

Andy doesn't come home until the 31st and I'm barely hanging on as it is!

Since he left things have been non-stop. That Thursday our nurse went home sick. Friday we had to go the pediatrician for tracheitis, followed by a trip to the lab. Saturday and Sunday I didn't have a day nurse. Monday another trip to the pedi. Tuesday a massive list of errands that took me 5hrs to complete (ridiculous!). Today our first trip to UNC. Thankfully our pre-op appointment was cancelled so we managed to make it home at 2-ish. Tomorrow I have to clean and restock the daiper bag and go back... and Friday we're back out at UNC.

I'm a walking zombie.

To single parents of special needs kids... my heart goes out to you! I feel exhausted after just a week (albeit one hell of a week schedule wise).

Things went well today, though. Mackenzie isn't aspirating when she's drinking from her sippy, but she is aspirating when she refluxes (evident by her current tracheitis)... and it turns out Mackenzie has wickedly awful reflux (which we kind of already knew, just wasn't entirely sure just HOW bad it really is), which is why she's not wanting to really eat by mouth and why she limits her oral intake. So the nutritionist is rearranging her feedings by increasing the calories and decreasing the volume. Then we're trying to get on with a GI specialist in Raleigh to figure out the meds... Mackenzie definitely needs more reflux meds, but it'll be the GIs call on what.

Phase 1 in feeding adjustments is to try 22cal, and run the smaller volume over a longer time (3 ounces over an hour during the day, and then her continuous nightly feed is a little over 1 ounce an hour). On Friday, if we haven't seen an improvement then we'll try 24 calorie. If that doesn't work, we can go up to 27 and yada yada. I have a special way to mix her formula (yes, I'm mixing ready-made formula) since it's only a 20cal formula. If the 24cal concoction doesn't work then we'll have to switch formulas... which is what I think is going to happen.

I'm not thrilled about having to micromanage Mackenzie's diet, but I'm super glad we have a nutritionist who is handling things. I'm all for bringing in specialists.

Busy busy week!

2009-07-20T15:36:00.002-04:00

Wednesday we're headed to UNC. We have a swallow study at 10am, nutrition appointment at 12pm, and then 3 stage pre-op session for Mac's bronch at 1:15. Then we go back on Friday for a follow up with pulmonology about Mackenzie's sleep study. I'm not looking forward to any of, especially Friday. I'm nervous that she'll go back on a rate. Hopefully I'm worrying for nothing!

Today we had a follow up with the pediatrician. Friday we took Mackenzie in for suspected tracheitis. Her secretions were pretty yellow (beige with Xoponex treatments) and she was on and off O2, although not significantly so. Our treatment over the weekend was oral antibiotics and continuance of the Xoponex nebs every 4hrs until we could get the result from her tracheal aspirit. The aspirit grew two types of bacteria, both that she's had before but hasn't grown in the past 4 aspirits. One is klebsiella, a pacteria commonly found in the bowel. She actually had klebsiella pneumonia back in November (when she went back on the vent the 1st time), and we thougth she was colonized with it because she grew it after every aspirit. The fact that we had made it through 4 aspirits and never grew it makes me think that this is a more recent issue... meaning Mackenzie is refluxing and aspirating. The second is pseudomonas which is pretty common in trached kids on a vent. It's a bacteria that grows in water. The current plan is to continue the oral antibiotics and add an inhaled antibiotic called tobramycin. She'll get the tobi nebs twice a day for 14 days. If she gets worse, then she'll need to be admitted to the PICU for IV antibiotics. I'm not a fan of that option, so hopefully the tobi will do its job! We've never used it before but I've heard it works beautifully.

I should probably start going through Mackenzie's Go Bag and restocking it. Arg. I wish there was a magically little fairy that could do that for me. :oD

Pics & Vids taken with my phone

2009-07-19T17:05:00.013-04:00

Reading a book...

Playing Picnic... but she doesn't share very well. ;o)

While Daddy's away, Mommy will play!
Mac's mohawk. :o)

Sitting pretty well!

Rolling faster too!

This is what I call Carrot Therapy. ;o)
Before we go back to trying baby food by mouth, we're getting her to play in it first and tolerate putting it up to her mouth by herself.

This is my favorite accomplishment right now.
Before, Mackenzie was shutting down as soon as she saw a spoon - it didn't matter what color, texture, etc. We took a month break from it, and when I reintroduced it she forgot that she hated it!

Aaannnddd because we're not all work and no play, here's a video of Mackenzie trying to eat the sandwhich from her picnic basket.

Much better!

2009-07-16T19:52:00.003-04:00

I have to admit, this morning I was a hot mess.

For starters, I didn't sleep well last night (hence the blog post at 4am). Then when I decided to pop out of bed and get in the shower, I discovered that our day nurse wasn't feeling well and desperately needed to go home. So off she went. In the meantime I have a sick Mackenzie and am doing nebs every 4hrs until we can get in to the pediatrician tomorrow. Exhausted from lack of sleep, and on edge waiting for Mackenzie to really act up respiratory wise, the morning didn't go as I would have liked.

I got an email back from our trach nurse that basically said not to hold our breath on fighting the decrease in nursing hours, and not to wean Mackenzie at ALL on her CPAP until after the pulmonologist figures out why all of a sudden Mackenzie's having apnea issues. She's had 2 episodes a day for the past two days, one on the trach collar that dropped her sats to 78% that had her on oxygen for an hour. I highly doubt we'll be able to wean after the appointment, and I'm quite nervous that the pulmo will want to put her back on a rate at night (SIMV ventilation instead of CPAP). So that news, coupled with what was already going on, was enough to get me feeling pretty deflated. Okay, extremely deflated.

But! I'm feeling much better now. I spent a great day with Mackenzie and while we didn't get in all her developmental exercises, we did have fun and enjoyed ourselves. We came up with a plan about the 12hr nursing by having 2 shifts of 6hrs each - one from midnight until 6am and the other from 6am to 12pm. I'm rarely asleep before midnight anyway and with a daynurse here until noon I can squeeze in any local appointments with Mackenzie in the AM. For trips to UNC we'll have to cross that bridge when we get there, but more than likely Andy will have to take off. Hopefully once we really get Mackenzie stable the trips to UNC will be less frequent. Not that she's not stable now - it's not like she's going into respiratory distress - but she's throwing curve balls left and right. I hope our current nurses are willing to take those hours because I hate to loose them, but at the same time those are the hours that have be to done for our family.

As far as the CPAP goes, oh well. I was hoping for decannulation (removing the trach) this year because of how "vocal" she is around her trach (that being a sign that she's passing air past the hemangioma), but it's okay if that's not what is in her cards. I am terrified to think of what the apnea could bring as far as how long the trach is needed, but Mackenzie is okay with it. If she fought us during trach changes or hated anything trach related, my heart would break... but she's a trooper and doesn't mind. I just need to go back to living in the moment - focus on getting through today instead of worrying about tomorrow.

So anyway, just wanted to share. My craptastic day has turned into something wonderful and fun. I'm confident that the reduction in nursing hours will work out well, and everything else is going to fall into place in its own time.

Whoever said this was an emotional rollercoaster really hit the nail on the head.

Cut in nursing hours?

2009-07-16T03:57:00.003-04:00

We found out today that the powers that be are looking to cut us down to 12hrs a day for nursing (as opposed to our normal 16). Currently our pediatrician is refusing to sign the new order for the reduction in hours and she told me she doesn't feel that it is what's best for Mackenzie and will help us fight it, but I'm not sure how this will all play out. Now I'm up at 4am debating all the possibilities.

Mackenzie isn't stable enough to go without someone up at night. She requires suctioning every 2hrs to keep plugs at bay on top of her new central apnea issues. But at the same time, in order to take Mac to any sort of appointment (or even out to socialize, or hell even to run errands or clean) during the day, there has to be 2 people -- and Andy can't take off work for every appointment. I don't recommend putting any trached child in the backseat by him/herself, but especially not one who can't manage her secretions on her own and requires frequent suctioning. Plus because of her reflux and having such an "available" airway, she's prone to throw up and aspirate so she can't be left alone while eating (which takes 50 minutes to run through) or 30-45 minutes afterward.

So now to figure out how we would use 12hrs and what would be best for Mackenzie. I could eliminate night nursing and stay up myself, to ensure we have someone available during the day for appointments or emergencies... but then there's the constant strain on my relationship with Andy in working the "night shift" and never having a night off. We'd be on completely different schedules. Plus, on days when we're out at UNC for the entire day, I'd essentially be going 36+ hours without sleep. Or if our day nurse called out and the company couldn't find coverage, same thing.

Or I could go without a day nurse and never take Mackenzie to a single appointment. (Hah, yeah right.) Or Andy could take off work and then risk loosing his job because he's having to take off work two days a week every 2 weeks. Plus he wouldn't be getting paid for those days.

We're in a no-win situation. It always amazes me that the people who decide the amount of "help" a special needs parent can get is always someone who (1) doesn't know your child, and (2) who has never cared for a special needs kid, much less 24hrs a day, 7 days a week like parents do.

I must say that no family wants nursing -- it's a necessary evil to take care of their child and do what's best for him/her. Trust me, I don't want someone else in my home taking care of my child when for nearly 8 months that was the situation in the NICU (except I got to "visit" her - yay!). I would love to wake up tomorrow morning and know, beyond a shadow of a doubt, that all Mackenzie needs is a loving family to look over her. Unfortunately, that's not the case for us or every single family out there... and it's disappointing that the people who need the help are always the ones who have to fight tooth and nail in order to get it.

Wow it's been a while. :o)

2009-07-14T16:22:00.004-04:00

Andy's on a plane from Atlanta to San Diego and the little Miss is taking an unusually timed nap, so I figured I'd hop on for a quick update.

Mackenzie's doing really well. On a good day she's sitting unassisted for almost a minute. She's also rolling over onto her tummy. She doesn't stay there too long... just enough to get a different view and roll back over. ;o) This week she has consistantly taken 20-30cc from her sippy each time it's been offered, which is 2-3 times a day depending if she's napping when it's time to eat. She's really coming along and making terrific progress. We're extremely proud.

We had to take a side step with the solid foods, but I think it will work well. Right now we're focusing on getting her to tolerate playing with the food. Then when she's more comfortable with hit, we'll try having her put some to her mouth (which she accidently does now anyway) and eventually tasting. Small baby steps. :o) ((I may have mentioned this in another entry??))

She has had a couple "off" days that had us thinking she might be getting an infection, so far so good! She had pretty yellow secretions last week, so I started Xoponex treatments for 48hrs and they cleared right up. Then the other night she was hanging out between 1/2 to 1 liter of oxygen without any other symptoms. She hasn't had any issues since -- I'm thinking it was just one of those odd occurances. It appears that every other night she's setting off her apnea alarm on her vent. She'll get her 12 whisper of a breaths and be fine. She goes to see her pulmonologist next week so we'll have an idea of where to go from here.

And here are a couple pics from our Fun with Pears time a couple days ago. Enjoy!

Busy Busy Month!

2009-07-04T06:11:00.002-04:00

I'm looking at Mackenzie's calendar for the month and I'm already tired. Physical therapy on Mondays, CBRS play therapy and speech therapy on Wednesdays. An Echocardiogram on the 8th at UNC. On the 22nd she has a swallow study at 10am, nutrition appointment at noon, and 3-stage pre-op beginning at 1:15, all out at UNC. And pulmonology sleep study follow up on the 24th, again at UNC. It's not helping that Andy leaves for California for two and a half weeks.

I flipped to August and that's looking to fill up as well. So far she has a cardiologist appointment on the 12th, Optomologist on the 13th, and bronch on the 24th. By that time our regular CBRS therapist will be back, so Mackenzie will go back to PT on Mondays, CBRS on Tuesdays, and Speech on Wednesdays.

The changes made to the home vent were very minor. They changed the apnea interval alarm to 10 seconds instead of 20. So if after 10 seconds Mackenzie isn't breathing, then the vent will give her 12 small breaths a minute. They're really a whisper of a breath - nothing that could sustain her, but just enough to give her an "Oh, I'm supposed to do that!" moment. For a little while there it looked like they were going to have to put her on a set rate of 8 breaths a minute because they weren't sure about the settings. Thankfully they didn't have to go that route.

The night before last she had one "episode" (as we like to call them), but last night she didn't have any at all. I'm hoping that if she can make it to the 24th without having any, I can push for aggressive weaning off the CPAP. We were given the go-ahead to wean at our last appointment, but she wasn't ready at the time so we diverted to working on having her nap on an HME. Now, I genuinely think she is. At the end of the day when we connect her she doesn't show any signs of increased work of breathing or really "needing" to go on. In the morning, if the nurse took her off a little early and Mackenzie fell back asleep without it on, she would desat and require oxygen, and have some pretty nice belly breathing. I don't think she has required any supplemental oxygen in about 2 or 3 weeks, excluding one of her episodes last week. Right now there are only 2 times that I think Mackenzie needs the CPAP - one being her naps while we're out and about because she's still not tolerating the HME 100%, and the second being at night when she's sick. I just think if she can make it to the 24th without any rescue breaths from the vent, then we should be in the clear to wean. We have an apnea monitor that can replace the vent alarm at night, and if needed they can change the interval alarm on that too... a nurse would just have to give Mackenzie the stimulation instead of the vent giving her a breath. And if she doesn't tolerate it, then we'll go back to CPAP. But I don't want to not let Mac try if she isn't getting any rescue breaths from the vent anyway. Know what I mean?

ANYWAY! Enough babbling. I hope everyone has a terrific 4th of July! Have fun and be safe. :oD

Almost!!!!!!!!!

2009-07-02T13:02:00.004-04:00

I was in the middle of scrubbing the kitchen floor when our regular day nurse called me to Mackenzie's room. And this is what I saw! Yay! Mac's one step closer to sitting unassisted. Our goal was to have her doing that by her first birthday, and I really think we're going to knock that out of the park!!! She's just using the boppy to balance on with her hands planted down. She's started to fall backward a few times, but manages to pull herself back up before falling too far. The little miss can even balance with her hands on the boppy and lift her legs up off the floor. Talk about building up a six pack! :oD And here's a video of her awesome ab work. :o)

Central Apnea

2009-07-01T12:35:00.002-04:00

The results from the sleep study came back and the trach nurse gave me a call. Mackenzie's having central apnea episodes. She's recovering on her own from them and isn't having any major desats (she went down to 88% once, and had a few minor desats to 93 and 92 but overall her sats were great). The trach nurse did, however, fax over new orders for our DME company to come over and dial in a back-up rate on the home vent.

I have a million questions, but the person who will have to field them is the pulmonologist. The trach nurse was confident that most kids get over the central apnea episodes with time, and some only require a little oxygen at night. She didn't know if this will effect having the trach removed and felt the pulmo would be best able to address that.

Right now, I feel like I've been socked in the gut. It's really not a huge change at all, but I had my hopes up on ditching the CPAP at night. I could picture in my head the DME company picking up the home vents and throwing a mini-celebration. It was going to be one less thing holding us back from decannulation. I wanted it so badly that now I almost feel defeated. Which is silly. It's not the end of the world and it's certainly not a gigantic leap backward by any means, but it's a whole new realm of unknown and questions for us.

Right now our follow-up with the pulmo is scheduled for the 24th, but the trach nurse is going to talk to him and see if he wants us to come in sooner to address the new findings. (The pulmo is out this week so we won't find out until next.) I hope he does because goodness knows I'll be going on a google binge looking for information... and we all know google can be a person's worst enemy!

Chewy Monster

2009-06-30T15:45:00.006-04:00

Mackenzie's teeth have really been bothering her. Well, she technically doesn't have any teeth yet, but I'm thinking it'll be any day now. She was chowing down on her paci yesterday... and this is a child who refused to even look at it for the past two months. Today she's shoving anything and everything in her mouth and has been really whiney. Poor baby!

Yesterday Mac discovered the art of putting her feet in her mouth! Yay! One more milestone to check off. :o) It was a bsolutely adorable, yet slightly disgusting. lol There's just something weird about soggy socks. ;o)

Andy will be in California next month from the 14th until the 31st for work. I'm not looking forward to playing the single Mom gig. I already warned the agency so they could make sure we have full staff nursing. We have to go to UNC on the 22nd and again on the 24th (the 24th will be an all day affair) so I'm sure I'll be extra exhausted by the time our night nurse gets in. I hope the time passes quickly and Andy enjoys his little vaca. :op

Oh! PS - We had the sleepy study and will hopefully get the results at the end of this week.

I heart Sleepy Wraps!

2009-06-27T13:38:00.004-04:00

Thanks to the suggestion of two of my bestest buddies (Nessa & Ashley), I ordered a Sleepy Wrap. It's an infant carrier that is essentially one gigantic scarf that you do some linen oragami with and it turns into a wonderful, ultra-comfy, carrier. I'm in love with it, and Mackenzie is too. :o) The past two times I've put her in it, she's fallen asleep within 10 minutes. She face plants forward and zonks out (see pic on right), so I have to carefully position her trach mask to make sure she's not occluding her airway. I've mastered the art of connecting her MicKey extension tube while she's in it facing me, and she's only puked on me twice while in it and eating -- which is utterly fantastic. I will say it is a major pain trying to suction her by myself, but it's getting better and I think I'm getting the hang of it.

I was talking with another trach mom yesterday about how anal we are. I'm a very particular person and I can only imagine how frustrating that must be to Andy. I have different soaps for just about everything (Burts Bees for Mackenzie, Johnson & Johnson for trach ties, Ivory for trachs and trach supplies, Pure & Clear for syringes and other feeding supplies), different wash basins for items (one for trach supplies, one for suction equipment which can ONLY be used for suction stuff, one for syringes), and even have a set procedure for washing things (like syringes are washed, set in the syringe basin -on top of a paper towel- to dry, then placed in the nursery sanitizer to sterilize before being put together and seperating into bags). Everything has a home and God forbid you put a trach mask in her O2 supply drawer... I might have a heart attack. All I can say is thank goodness Andy loves me. ;o) And, of course, thank goodness there are other parents who are just as bad!

One of Andy's bosses is having a cook out this Friday at his place in Southern Pines. As long as Mackenzie's up for it and the weather is nice (right now it's saying 95 so maybe not), we'll be going. Andy wants to show Mackenzie horses for the first time. I'll make sure to takes lots of pics of that. lol I'm sure Mac will stare at them with an open mouth like she usually does when she sees something new. ;o) It's quite cute! I don't think we'd stay much longer than an hour or so, but I know Andy really wants to go. We shall see!!!

Sleep Study

2009-06-26T10:52:00.003-04:00

After a chat with our trach nurse today, Mackenzie has been scheduled for a sleep study on Sunday night. We've noticed over the past several weeks that Mackenzie has been steadily dropping her respirations into the teens at night. It started in the 20s, and then began progressively dipping lower and lower. Her lungs sound great, no signs of infection, and over all she's doing really well... but when she hit 12bpm this morning enough was enough and I put in a call to our trach nurse.

I think right now the worst case scenario is central apnea (which I don't think is going on), and the best case scenario is the CPAP at night is making it too easy so Mackenzie is getting lazy. If the latter is the case (which we really hope it is!), then we could ditch the CPAP and see how she does. So I'm eager to get the results and see where we're at.

Sssoooo Andy and I will be loading up the van and heading to UNC Sunday afternoon. I'm glad we're getting this taken care of now since he leaves for California on the 13th. Yeeep. I'll update when we know more. Think positive!!!

mmmmmmmmmm Blueberries!

2009-06-23T15:36:00.002-04:00

Things have been going well. There seem to be new challenges every week and sometimes I just wish we could a "baseline" week without any surprises, but then again I suppose that's half the fun. (Harharhar - totally being sarcastic.)

Mackenzie's having some blood pressure and heart rate problems, and we're in the midst of getting that solved. The nephrologist wants to bring a cardiologist in to trouble shoot, so to speak. Hopefully our pediatrician can get the referral out quickly (it seems to typically take them about 3 weeks). The nephro is also trying to get an echo scheduled sooner than we had originally planned, and we hope to have that done while waiting for the cardiology consult to get in. *sigh* It's hard for me not to hit the panic button right now since this is a new problem that we've never encountered before. Plus I'm just not very patient and I'm not used to having to "wait" for tests. I'm accustomed to the NICU where everything was inhouse and done the same day. I'm sure by the time everything is said and done with Mackenzie, my patience will have expanded exponentially.

But anyway! Mackenzie's doing super with working on her developmental milestones. I forgot to mention that Mac had her 9 month checkup and that it went really well. I had to fill out a 10 month developmental survey for her, but after seeing all the "no"s the pedi had me fill out a 6 month one as well. She's still pretty behind (although making terrific progress in catching up!) One thing she did ace on her 10 month eval was helping to dress herself. She actually pushes her arms into sleeves and pulls them out. So she's 4 months ahead on that. Woohoo! Mac's so close to rolling over completely it's becoming a nail biting situation. We're just waiting for that day. I told her physical therapist that my main goal right now is to get her sitting independently before her first birthday.

Mackenzie has discovered her trach. <:-O In the NICU she loved holding on to her vent circuit and pulling it off, but now she's fiddling with the trach itself. During one of our "napping while on an HME" sessions (which she's been doing really well at btw), she wrapped her little hand around her HME and fell asleep that way. Yesterday was a "let me stick my finger in my trach" day. Thank goodness for trach guards so she couldn't get it all the way in. But quite literally every couple of hours I was having to busy her hands from playing with her trach. I don't make it a negative thing, but I'd prefer she play with toys rather than her airway. ;o)

A friend of mine (I love you Nessa) recommend a product by Munchkin called a Fresh Food Feeder. Originally I was going to wait until talking with the Speech Therapist about it, but she made such a to-do that I went out at got the Fresh Feeding Set and then stopped off at Harris Teeter to grab some organic blueberries, bananas, apples, and pears. I hate to drive all the way out there but it's the only supermarket I know of that sells organic produce. Right now I'm letting Mackenzie "discover" the feeder before I put any food in it. She seems keen on gnawing on the plastic part, but not so much the mesh. If she's tolerating it well then in the next day or two I'll throw in some freshly ground blueberries to start with. Blueberries tend to be pretty flavorful, so I'm thinking that might be a good start. I have some Dreft Stain Remover on hand too. ;o)

Alright, I'm off of here and will update as things progress!

Happy Father's Day Daddy

2009-06-21T06:24:00.000-04:00

We love you very much. :o)

Silly Pic Saturday

2009-06-20T09:04:00.004-04:00

Warning These were taken with my cellphone, so excuse the poor quality. ;o)

Her new way to pass the time - chewing on her favorite blankie.

Eyeing my delicious phone...

Licknig her lips - taken moments before she tried to devour it. Yum.

Since she loves MY phone so much, I gave her my old one (sans battery of course).
.

Now it's one of her favorite toys (second only to her Upsy Daisy dollie). :o)

Apparently spoons are okay as long as: (1) they don't have food on them; (2) Mommy, Daddy, nurse, or speech therapist isn't holding it; and (3) No one comes near Miss Mac when she has her spoon.

Now if we could just get her to tolerate some food on that thing!

Feet!

2009-06-19T05:30:00.003-04:00

Yesterday Mackenzie really discovered her feet! She's noticed them before but never showed much interest, but yesterday she was all about them. It was absolutely adorable. :o) I love milestone moments.

And my cuddler continues to be a cuddler. And biter. If she had teeth, I'd be in big trouble because she's always mouthing on me. I don't mind for right now, but we may have to have a chat with those teeth finally break through (which hasn't happened yet, obviously).

We have her napping okay on an HME once a day. Our goal is to get her napping well on an HME before we start weaning the CPAP (with the thought that she will need a good rest at night to recoup from the HME during the day). So far, so good. She does work a little harder with the HME on sometimes (especially during her nap), but I think in a week or two we can try 2 naps.

Alright, I'm off to finish getting ready for our trip to UNC today. Mackenzie's having her MicKey button replaced. It should be a "quick" and easy trip. We're leaving at 7am and hopefully should get back in town around 2:30 or 3pm.

9 month check up

2009-06-17T13:32:00.006-04:00

We had our first "routine" pediatrician visit today. In the past our visits have been because of illnesses or follow up with illnesses, so today it was very nice to take Mackenzie in for her 9 month checkup knowing everything was going well. It went well, btw. Mackenzie is now 17 pounds even (fully clothed so not entirely accurate, but we'll take it!) She's 26 inches long - shorty pants.

I asked about starting juices (organic apple and organic pear) because of Mackenzie's oral aversion. She's really not digging the formula in her sippy cups (which she's still trying to figure out but I think she's really like the Tomme Tippy - thanks so much Clare!!!), so I was hoping that perhaps a little tasty juice would spark her interest. The pedi said that the American Academy of Pediatrics doesn't recommend juices until 2 years old, but that for Mackenzie's oral issues one to two ounces a day will be fine. I told her I plan to water it down with 15cc water and 15cc juice twice a day, so that'd be an ounce a day anyway. She said it was okay and I'll be trying that this afternoon to see how it goes. Can you tell I'm desperate to get her to enjoy eating? lol Another trach mom said her child didn't do the bland juice (trached kids have a very low sense of taste) as a baby, but it's worth a try anywho. And I'll also have to thicken up the juice a little too because I have a sneaky suspicion that it'll be too thin for Mackenzie to manipulate. So I'm going to try 1/2 an ounce of organic pear juice with 1/2 an ounce of nursery water, both mixed with 1 tbs of rice cereal. If the rice cereal is throwing her off, then I'll order an actual thickener. I wonder if I could mix some juice in with her formula and if that would make it taste more "interesting"?? Oh heck. Now I'm confusing myself on what to try first. Too bad our speech therapist is on vaca this week!

Everything else is pretty much same ole, same ole. We're continuing with her current feeding regimen as she's gaining a good amount of weight. She gets about 29.5 ounces of formula over a 24hr period which equates to 885 calories. We tentatively have a bronch scheduled for next month (after the docs at UNC figure out what's going on). I told the nurse today to make sure that the ENTs understand that whoever does the bronch should n-o-t touch the hemangioma. Just leave it be and see if it'll go away on its own. I'm afraid of coming off as the Mom who never wants her child decannulated, which definitely is NOT the case. I just don't want a whole bunch of surgeries done in her airway when it's something that could potentially go away on its own. I don't want anymore scar tissue in her airway. It's bad enough she has some on her vocal cords from the lasering in December. :o(

I figured I'd take some pics of Mackenzie's room to show off. ;o) Andy and I put a lot of work into it and I love it. Here ya go! ((And I threw in a few random pics too.))

This is the front wall, with the door on the right. In the center on the floor is her oxygen concentrator, with her trach "go bag" to the right. The go bag has all our emergency medical supplies like spare trachs, ambu bag, suction catheters, etc. To the left of the concentrator is the IV pole with her feeding pump, and then the crib. Above the foot of the crib are two emergency trachs (the current size and a downsize) and her ambu bag.

On the left of this pic is her ventilator that we use to provide Mackenzie CPAP at night, and to the lower right of that is her pulse oximeter which tells us her oxygen saturations and her heart rate.

Voila - her crib. Under the head of the crib (you can't really see it) is her suction machine. You'll also notice the head of the crib mattress is at a slight incline for her reflux.

To the left of the crib on the floor is the air compressor for Mackenzie's trach collar that she wears during the day (if you notice where the bottle is at). The trach collar provides a cool mist into her trach to keep her from lungs from drying out. On top of it is her green nebulizer. And ontop of the stand is her pulse ox.

The back of her room. On the right closet door is her schedule and a list of contacts the nurses might need. On the left closet door is a Baby Sign Language poster.

And the right wall. The lamp is for the night nurses to see her at night (otherwise I'd have it pitch dark - arg). Then the organizers for most of her supplies. What we don't have in the organizers (like vent circuits, corregated tubing, bottles of saline and sterile water, etc) are stored in Mackenzie's closet and the garage.

And here is Mackenzie examining her Upsy Daisy dollie that her trach friend sent her. She spent a lot of time trying to eat Upsy. Yum.

Night time! Mackenzie hanging out with Upsy just before lights out.

Mackenzie and Daddy playing golf on his PSP. She loves electronics! I ended up taking the battery out of one of my old cell phones to give to her to play with. She loves it. ;o)

9 Months Old Today

2009-06-13T09:36:00.002-04:00

Miss Mackenzie is 9 months old today. Wowzers. It doesn't feel like it's been so long.

She'll be turning 1 in 3 months! It's slightly comical - I always thought at a child's first birthday they're supposed to be standing up and crawling all around the house. It would be super nice to have Mackenzie crawling before she hits a year old. It's entirely possible! I'd also like her to be sitting unassisted. I'm not sure what we're going to do for her birthday, although part of me wants to smuggle her out of town to celebrate somewhere she'll find thoroughly facinating. I wish they had indoor zoos or something. lol And she'll definitely have a cake to destroy with her hands. ;o)

Over the past few days I've noticed a little personality change. Mackenzie has become much more of a cuddler. I'm lovin' it! I think she's getting pretty close to reachig for us, too. Please, please, please let Mackenzie be an emotional girly who will always want her Mommy or Daddy and never leave our sides. I don't know if I can handle her being too adventurous. Oh and "cuddling" for Mac means face planting herself in my chest or shoulder and falling asleep. She's also developed an affinity for covering her face while she's sleeping too. It makes me a little nervous because I'm afraid of her becoming a nose breather and not realizing that covering her face means she can't breathe, but I was told by other trach parents that it's not a problem. For now, let her do what she wants (within reason, obviously), and she'll grow out of it.

The little weed is growing out of her 9 month clothes and fitting 12 month really well. They're long for her, but what can I say... she has her Mommy's height. I'm disappointed that they don't make footed sleepers for 12 month+, so Mommy's having to accept big girl pajamas. **sniffle**

I might be able to sneak some pics in today.

Speech Therapy Update

2009-06-11T16:05:00.002-04:00

We have officially been warned that Mackenzie's feeding issues are no longer a "skill" issue. Right now they're behavioral, in that she just doesn't want to eat. However it came about, she now views oral feeding as something negative. That doesn't come as a big shock to us at all given how she reacts toward oral sessions. I'm glad we're addressing the issue and working on it. We were told that it'll take a long time to tackle and we have to be aggressive with the therapies. It'll happen, I know it will, it's just going to be a bit of a struggle to get there. And who knows, perhaps when the trach comes out swallowing will feel better for her and it won't be so hard to handle. There are several trach parents who struggled for years with feeding issues and decannulation was their turning point.

Can I just give Mackenzie a piece of chocolate and show her how great food is? lol

We're taking a few steps back on one avenue and then a few side-steps on another.

We're nixing out baby food for the time being. She has a "play spoon" that she can play with during the day. Then she has a "session" spoon for us to work on her opening for. We'll essentially just want to start with her opening her mouth for the spoon consistently, and she'll receive an instant award for doing so. The Speech Therapist suggested bubbles, so that's what we'll give a try first. Once she can open for the spoon, then we'll try dipping the spoon in food. And only then will we move on to actual baby food feeding sessions. In the meantime, our sessions are all a mind game. We control the session and must always "win", meaning she has to open her mouth for the spoon before we stop the session. She's not allowed to grab the spoon or hold it.

As for her nippling, we've officially tossed the bottles and are trying out various cups. Right now we have the Gerber Nuk Sippy Cup, a version of the Honey Bear Cup with Straw (same thing except not shaped like a bear and has measurements on the side), and Flexi Cups. I'm also going to go out and get some free flowing sippy cups to try those too. And if anyone has suggestions, feel free to comment!

Today she did really well with her NUK sippy. She took 30cc (an ounce). She vibed well and took it like a pro. :o) I think she would have continued going, but her secretions were getting awful and her sats were dropping. After I suctioned her, Mac seemed to have lost interest and just wanted to watch Pinky Dinky Doo. She has a swallow study next month and with how juicy her trach gets while feeding, I'm curious to see what the study shows.

Overall I feel great about the direction we're heading with her oral therapy. Even though we're taking a step back with the baby food, I know it's the right thing to do and I know Mac will benefit from it. :o)

Videos of today's progress!

2009-06-10T14:46:00.008-04:00

Just to warn, these were taken with my cell so they're not the best of quality! Oh, and ignore the pulse ox alarm going off.

Mackenzie shook her rattle for the first time!! Yay!

She's making a lot of progress with rolling over too. Right now she's struggling on kicking her leg over and getting her arm out from under her. But she's doing great!

And here she is once she finally made it on her tummy:

A few thoughts...

2009-06-10T07:36:00.002-04:00

So we're going on day 5 without our 6am-2pm nursing. I'm tired, but I actually feel empowered too.

Some moments I feel like I don't have time to breathe. Drawing up meds and food every 3 hours starting at 9am (I counted and it's 12 doses of meds I have to draw), the pedialyte, then the 6 breathing treatments a day, cleaning up spit ups and changing outfits, throwing that laundry in the wash, changing massive stools, suctioning like a mad woman, entertaining her and making sure she's happy... And of course alarms don't happen by themselves. Early yesterday morning, her vent, pulse ox, and feeding pump decided to serenade me all at once while I was trying to deal with a massive emesis and Mackenzie choking on it. After everything was settled and Mac dosed off again, I went into the kitchen and laughed.

I've also had the "what was I thinking" moments. Like yesterday I went to rinse out her feeding bag and had somehow managed to take the feeding pump off the IV pole and bring it in to the kitchen, leaving the bag still hanging in her room.

But more importantly, aside from the exhaustion and silly mistakes (like throwing a syringe into a basin with soaking suction equipment - don't worry, I threw the syringe out), we've had fun. I'm working on getting her to roll. Mac loves rolling onto her side now, but isn't too sure about this tummy business. We're also working on more weight baring with her arms. She's to the point where if I hold her in my arms, parallel to my body, she'll put her arms on my chest or shoulder and push. We named every single lady bug and dragon fly on her wall, and her favorite is Miss Spot. And we've had more tea parties in one day than I've had in my entire life.

It's all worth it. This was never our ideal circumstances and I wish things were easier for Mackenzie, but the struggles and juggling makes everything so much sweeter and more rewarding. I remember reading a "welcome message" written by one of our neonatologists about being in the NICU. He wrote that every milestone would be more special and that we would celebrate what others take for granted. While at the time I thought it was true, over the last several months I've grown to know it's true.

Mid-Morning Update x2

2009-06-09T11:06:00.002-04:00

Positives:
++Respirations back to normal!
++No oxygen except 1/2 a liter for 30 minutes this morning
++Secretions thinning and on the brink of being white again

Negatives:
--Decreased urine output (1 wet diaper in almost 10 hours - now on a pedialyte regimen for 24hrs of 30 to 60cc an hour after feeding per pediatrician)
--Still tachycardic after BP meds
--Mommy's really, really, REALLY tired.

Yesterday's Quote of the Day:
Daddy: "Why is our daughter wearing a pink shirt, leopard print pants, and purple socks?"
Mommy: "Revenge. She shouldn't have thrown up on me."

After a really stressful morning, I'm starting to relax. Mackenzie decided to skip her 10am nap this morning so I'm waiting for her to zonk out. She has the dazed look, but is refusing to give Mommy a break. I think Daddy put her up to this. ;o)

Subglottic Hemangioma

2009-06-09T08:41:00.002-04:00

Four children with subglottic hemangiomas.

Of the four children, 2 have laryngomalacia and 1 has laryngotracheomalacia.

Interesting stuff. I sense a google binge coming on.

No day nurse... again.

2009-06-09T06:46:00.002-04:00

Our day nurse called out. She thinks she might be getting sick, so decided it was better not to come - which I definitely appreciate. The agency couldn't find anyone to fill her spot, so we're going without day nursing for the 4th day in a row. I have a feeling that if the nurse is sick then she won't be back for a week. Geeze, please let them find someone to cover her shifts. Otherwise that would put us through until Monday without a day nurse.

BUT! Our lovely night nurse, Miss E, was here last night. I told her everything that happened and felt like I was bombarding her with information. Poor nurse. :o( I'm very thankful she was here last night. I was so stinkin' exhausted.

Miss E mentioned that Mackenzie went from midnight until 5am last night without a wet diaper. Arg. I'm hoping it was a fluke, but obviously something to keep an eye on today.

Mid Day Update

2009-06-08T14:33:00.003-04:00

The nurse the agency tried to get in couldn't make it. So it's been just Mac and me. I'm running off about 3hrs of sleep (that's being generous), and I'm starting to get pretty tired but overall things are going well.

Mackenzie didn't wake up until noon. Normally she's a morning bird and up between 7:30 and 8:30. She was sitting at 1/2 a liter of O2 and didn't seem to want to wean off of it. She was also desatting when I removed the circuit to suction her. She was worn out!

When I switched her over to her trach collar she went up to a liter of O2. Her secretions are still a dark yellow - almost a tinge of green. They were thick so I increased the PSI on her compressor to compensate. I called the peds pulmonologist on call at UNC to run everything by her and see if she had any other suggestions. She told me to increase chest PT to at least 3 times a day, perferably 4, as well as Xoponex nebs every 6 hours (increase if needed).

In the meantime I scheduled a follow-up pediatrician appointment for Thursday, canceled the PT meeting on Wednesday (I have to go with my Mom to a doctor's appointment), and called the DME about our MicKey extension sets (surprise, surprise the pedi office didn't fax over the rx). The RT from our DME company came over to swap out our pulse ox, as the old one wouldn't hold a charge.

I also sent an email to Mac's nephrologist about some issues with Mackenzie's heart rate. The change in the norvasc has caused it to elevate after we give her the AM dose. She said to discontinue the norvasc for now, take Mac to get more labs drawn, and have the pediatrician take her blood pressure at our follow-up. If things don't change then we'll end up taking her to UNC to see what's going on. We have a manual infant BP cuff but can't hear a thing with it and are waiting on our nursing agency to find an automatic machine.

This is going to be a busy week. Tuesday we go for labs, Wednesday I'm off with my Mom (and need to pick up refills on RXs), Thursday pediatrician, and Friday peds surgery at UNC for a MicKey button change. I'm going to see if I can reschedule the peds surgery appointment to the week after next to give Mackenzie enough time to get over whatever illness is going on. I don't want to push her right now with any traveling.

Only 2hrs and 45min until Andy's home. lol

Home from the ED

2009-06-08T03:09:00.002-04:00

Mackenzie's secretions had been getting worse all day. She wasn't showing any other symptoms until bed time. When I connected her CPAP she immediately fell into a deep sleep (as always), but her respirations were still in the 60s. I didn't like her work of breathing either. We had a new night nurse and I was afraid that she wouldn't know Mackenzie's norm and let things slide that probably shouldn't... so we decided to take her to the Children's ED. Of course after we get everything loaded in the van, she starts to settle out and her respirations drop into the 50s - still high for when she's sleeping but acceptable, to me.

She had developed some wheezing so they gave her a couple nebs. Chest x-ray was fine. Her secretions are still a dark, thick yellow and now we're getting a bit of blood tinged (probably from the irritation of coughing). We were given an RX for antibiotics (eesh, again) and we'll see what the trach aspirit grows.

I'm pooped and I feel really bad for Andy since he has to work tomorrow (today technically). It'll be our first night without nursing and thankfully our Tues-Fri nurse is going to be in sometime tomorrow. Of course, the aerobed has a hole in it so I can't sleep in Mac's room. I put the baby monitor on top of the pulse ox to amplify any alarms and I'll keep the bedroom door open. I also adjusted her paramaters on the pulse ox to alarm at 93 instead of 90. We're to keep her sats at 94+ and since I won't be in the room I want to know if it dips below 94.

Apparently Mackenzie's exhausted too. When I removed her vent circuit to suction her, she automatically desatted as soon as the circuit was detached. That's not like her at all. I have a feeling she's going to be sleeping in tomorrow - which is definitely a good thing for Mommy.

Speaking of sleep - I'm getting some. G'nite!

Ugh... yellow secretions.

2009-06-07T20:08:00.003-04:00

Yesterday morning when I changed Mac's trach I noticed she had yellow secretions. They went away and turned back to white, so I didn't think much of it. Today she's had yellow secretions non stop. She's coughing a little more than normal, but not ridiculously so. We've even had a small "string" of blood which I'm assuming came from the pressure of coughing on the hemangioma?

She's not showing any other signs of a possible infection. No oxygen requirement, no elevated temperature, no increase work of breathing, nada. Her lungs sound great compared to what they have sounded like in the past week or so. She seems fine aside from the yellow secretions.

Of course this happens when I cancelled our day nursing tomorrow. We also have a new nurse coming on tonight that doesn't know Mackenzie. Oh the irony!

Eventful Day. Oye so tired!

2009-06-06T19:33:00.007-04:00

I've been up since 4am... and I'm knackered! Mackenzie was a little confused when I woke her up at 7am this morning for a bath and trach change/care. Of course Andy didn't wake up until after everything was finished. Men. ;o) He's taking care of everything tonight, though, so it evens out. His job will be sending him out to California for a week or two and I don't know what I'm going to do without his help.

The NICU reunion was nice. There were a lot of people there. We ran into a few families that we knew, but for the most part we didn't really recognize anyone (except the docs and nurses). Mackenzie was tired halfway through and I think the commotion was too much for her. I can't say that I miss that place, but I truly miss some of the nurses and the female Dr C. I completely disagree with the saying: "It takes someone special to be a nurse (or doctor)". Anyone can be a nurse and anyone can be a doctor... but to be a GOOD one is a completely different story. (Don't get me wrong I liked all the neos for the most part - even when I found them infuriating - but I think Dr. C was the only one who actually understood me.) I think it's unfortunate the way our discharge happened and that the coordinator worked against us instead of helping us. I still get really angry when I think back on some of the issues that we had with her both while in the NICU and in the PICU. Actually, the drama we had in the CFV PICU was caused by this particular person. Anyway, it's a long story that isn't worth getting in to. I need to work on letting things go and not allowing them to eat at me.

Today was Mac's first day of peas and boy were they thick! I had to water them down because they were incredibly pasty. Mac did really well with them and managed to eat 1/3 of a jar. That's twice now! Yay! She's still not wanting to open her mouth for the spoon. You could also tell she wasn't really "into" it, but she gave it a go and we're really proud of her. :o)

One of the former NICU Mom's suggested the Gerber NUK sippy cup so I ran to Walmart to grab one. (I had to go anyway.) We decided to give it a try at the 6pm feeding instead of the bottle to see what would happen. She was actually more receptive to the sippy than she is to her bottle. She played around with it quite a bit. She seemed to like the silicone tip and overall I think it's a keeper! She took 30cc (an ounce)! How'd we luck into getting TWO good oral sessions today?! Way to go Mackenzie!

She was cracking me up earlier - so much so that I was crying. She had a little bit of secretions in her trach, but not enough to warrant needing suctioned right then and there. I was kissing and tickling her, and she was laughing - you could hear it with the secretions. I suppose it's hard to describe unless you've heard the "gummy" trach sound... but if you think of how you breathe when you laugh, that's what it sounded like. Not the laugh itself, but the breaths. Make sense? Anyway, that's what she was doing and it's the closest we've come to hearing her laugh. The more she laughed, the more I laughed. Silly girl.

Alright... on to the pictures!

Oh my, eating is so hard! ((Taken this morning while she was getting her breakfast pumped)))

"Daddy, I really don't know what to think of this green stuff."

Yum!

"Okay, now how does this thing work?"

If I look uncomfortable... that's because I was.

I love the expression on her face in this one. :o)

ETA: I just reread this post and holy COW I'm all over the place with my thoughts. I sound like a rambling mad woman. Sorry!

PS: Don't forget to stop in and donate a couple bucks to the Cystic Fibrosis walk!

Great Day :o)

2009-06-05T16:21:00.002-04:00

Backing up, last night the agency sent out a nurse to orient with our usual night nurse (Miss E). Typically if I don't like a nurse I'll give them one shift to change my mind. With the nurse last night, I had sent an email to one of the recruiters telling them not to send her back within 10 minutes of the nurse being here. I found out this morning from or Tuesday-Friday day nurse (we'll call her Lizzy) that Miss E didn't like her either. So it's settled. That nurse will NOT be coming back. Although word of advice to other nurses - don't show up for orientation 45 minutes late. And don't get a bored look on your face when I'm explaining my daughter's care. Just sayin'. ;o)

Anyway, three nurses came to orient today with our Tu-Fri day nurse. Now I emphatically trust this day nurse's judgment, and take her opinion into account with a lot of "problems" that arise. The first nurse comes at 8am, takes one look at the vent and goes "Oh no, can't do it". Keep in mind that Mac's only on CPAP at night. But the nurse (who happened to be a well experienced surgical RN who didn't have pediatric experience at all) didn't feel comfortable with it and I definitely appreciate someone who is upfront and honest. The third nurse looked horrified with the amount of "floor time" Mackenzie has and told Lizzy that she can't handle going up and down from the floor (she was an older nurse). She also looked at the vent and called the agency to say "No can do!"

The second nurse, however, really impressed Lizzy and she thinks I'll really like the nurse. (I was out to lunch with my mother at Chilis. Yum!) The orienting nurse was the only nurse to ask where the backup battery was for the vent and overall was big on knowing where everything is. The lady has only been a nurse for one year, but was a medical assistant for 10 years and is also an EMT. She has tons of vent experience (which subsequently means trach experience). The nurse is scheduled to work Sunday night, so Andy and I will meet her then. Judging by what Lizzy told us, I'm actually excited to meet the nurse. :o)

I had to order a new glider for Mackenzie's room. Miss E accidently cracked the leg on the current glider by reaching over to grab a pen on the floor. It has now completely split in two. Ordinarily I'd probably complain to the agency, but I know it was a complete accident and Miss E is a great nurse. The new one should arrive in a couple weeks. It looks pretty comfortable. Sorry Dad! We loved the glider while it lasted! ;o)

My Mom bought Mackenzie a high chair. We had been using her Bumbo and were holding off on getting a high chair because it's one more thing we have to fit in her room, but Mac's getting lazy and dropping her head quite a bit. Feeding her in the Bumbo isn't the best anymore. I'm excited to put her in the high chair for the first time. Hopefully she likes it.

Aaaannnd last, but certainly not least... Major congratulations to Andy for his promotion!!! Way to go Daddy!!!!!! Mac's extremely proud!

Walk for Cystic Fibrosis

2009-06-05T14:32:00.002-04:00

Two friends of mine from high school are doing the Great Strides walk for Cystic Fibrosis. They could use your help to raise money. Click on the button below to donate. Any amount helps! :o)

One more week of bottles.

2009-06-03T15:50:00.003-04:00

We just finished with our speech therapy session for the week. It was decided to give Mackenzie one more week of nippling from a bottle to see if she can get the hang of it or make any terrific progress. If, at this time next week, she hasn't gotten any further, we're abandoning the bottle and moving on to cups (like the Honey Bear Cup with straw). A little bittersweet.

Kooky Family Pics

2009-06-02T19:21:00.003-04:00

Mac hanging out at the indoor pool!

2009-06-02T19:01:00.006-04:00

Yesterday Mackenzie and I decided to go to the "pool". We don't have her baby pool yet (we always forget to get it when we're at Target), so her bath tub became her pool. Then it was too hot outside - not to mention too sunny, and Miss Mac does not like the sun. I decided to set up her tub in her room, throw her tankini on, and we had an indoor pool party! Here are some pics... enjoy!

Mackenzie's first pool party

And then we lounged under the "sun" (ie: ceiling fan/bulb).

Go America! We're number 1!

2009-06-01T15:25:00.003-04:00

U.....S.....A.....U.....S.....A.....U.....S.....A! ("Battle Hymn of the Republic" softly playing in the background) Our forefathers came to this great country to escape the tyranny and oppression of England, and how do we thank them? By reading brit-chick-lit and buying our children propagandist tea sets! Communist! Love you, Daddy

**Edited by Mommy** Says the man who plays tea party with said propogandist tea set. :op

Ehem!

2009-06-01T13:50:00.002-04:00

The British comedy he's referring to is Russell Brand the comedian... who is utterly hilarious. As far as the tea pot goes, it's part of the Fisher-Price Laugh 'N Learn Tea Set and I can hardly control the songs they put on it! I just bought it because it was cute and every little girl needs a tea set. :o)

That's not the whole story!

2009-06-01T12:18:00.002-04:00

As far as her love of chick-brit-lit goes, that's not the whole story. She also likes british comedies and even bought Mac a tea set that plays "God save the queen". -Daddy

Shameful Secret + Mac Update

2009-05-31T22:22:00.003-04:00

Shameful Secret of the Day: I, Niff, am in love with British Chic Lit. There. I said it. Andy laughs about it and I can't explain why... I just adore it! I think it started out with the author Sophie Kinsella - known bests for her Confessions of a Shopaholic series - who also goes by the pen name Madeleine Wickham. (I remember literally squealing when I found out that tidbit of info... that's how much I love her.) Then I moved to less dazzling writers like Elizabeth Noble and Melissa Nathan. Anywho, the latest author craze I've gone on is Jane Green. She's easily made my list of top 5 favorite Chic Lit authors. Sophie Kinsella holds the spot of number 1, obviously. When I find an author I like, I end up reading all of their books and then get disappointed that they haven't written more. I have 5 left to go with Jane Green. :o( BUT! At least I'm not reading a book a day like I was when Mac was in the NICU.

Bbbuuutttt anyway! Sorry, had to make my confession.

Mackenzie's doing great. We were supposed to have day nursing this weekend, but surprise, surprise it fell through. It happens so it's nothing to get upset about. Although we did receive our nursing schedule for June and it's a complete joke. They don't have anyone for day nursing on the weekends (at all), and there's over a week of nights that are empty. I'm going to shoot one of the recruiters an email tomorrow about it. Obviously it's do-able, just exhausting. As it stands there is one weekend where we wouldn't have coverage at all (day or night) and we wouldn't have night coverage for the following week. Which means I would be staying up with Mackenzie (she has to be suctioned every 2hrs) and would sleep while the day nurse is here. Looks okay on the surface, but I wouldn't be able to get anything done during the day. So anyway, I'll be shooting out an email and see what happens. If they're able to find someone then that's great, but if not we'll make it work. I suppose I just don't understand the point of sending out such a shoddy schedule. Not like the agency at all.

Mac's getting close to discovering her feet. She lifts her legs and grabs them quite a bit, so I think it's only a matter of days before she find that there are "toys" at the end of her legs. :o)

Oh, and we started sweet potatoes a couple days ago. We had held off on introducing any new baby food since Mackenzie was on antibiotics. If she were to have a reaction, we wanted to know what it was to. She seems to really enjoy the sweet potatoes and is starting to get the hang of it. Of course, Mac isn't without her quirks and refuses to eat without being held. I hold her in one arm and spoon her with my free hand. It's been interesting. :o) She likes to grab at the spoon and then rub the food in my face. The first day we tried it she managed to smear sweet potatoes all over my face, neck, and white shirt. T'was utterly hilarious and I was in tears from laughing so hard. Earth's Best only makes 3 veggies and 3 fruits for their Stage 1 foods. Next week we'll do peas, finishing the veggies, and then move on to fruits.

We got a call from our ST/OT/PT combo at UNC. She wanted to know if we wanted the swallow study ASAP or if they could schedule it for whenever (obviously in the near future). I told her that we thought she might be micro-aspirating because of the wetness while nippling, but we're still trying and haven't seen any ill-effects if Mackenzie is, indeed, aspirating. I don't think it's necessary to rush off for a swallow study tomorrow, but it does need to be done. So they're going to schedule the swallow study and the ST/OT/PT will come down for it (while another ST performs the fluroscopy) and take a looksie at how Mackenzie does. Then we'll probably have speech clinics to go to at UNC on top of having a ST (speech therapist) coming out to the house. I love that we're getting so much help with Mac's eating issues and I don't feel as weary about it all.

He doesn't like Oreos...

2009-05-30T21:33:00.001-04:00

Andy just told me he doesn't like Oreos.

*sigh*

I'm glad I know now. We can never have a future together. What kind of man doesn't like Oreos?

Wait, I take that back. That means more for me and Mac!!

Moving forward with our lives. :o)

2009-05-28T12:49:00.002-04:00

When you have a special needs child who is medically fragile, it's inherently easy to put yourself in a bubble. There becomes an unspoken social barrier between you and other parents because you simply can't relate to each other. There is the off-chance that you're able to "meet" (even in the online world) a parent in similar circumstances, and with those relationships you tend to grab hold of that commonality and use it as a pillar of strength... but overall there is still a sense of despair in your limitations. Many times you feel stuck in your house for fear of germs, people starring, the difficultly in bringing your child out, or even just the general feeling of whether your child can handle the excitement of being in a new environment.

I feel that I'm finally able to move past this stage. We're getting out, and we're no longer going to keep our daughter tucked away for fear of getting in a small room with Joe Schmoe who doesn't understand the importance of covering his mouth when he coughs. I've spent several weeks feeling trapped in the house because I thought that was what was best for Mackenzie. We had NICU staff that would breathe fire when talking about parents taking their preemies out in public within 6 months of being home (especially during cold & flu season), so it was easy to feel like I had to keep her at home and away from the world. But I think I missed that while it's important to keep Mac away from germs, it's equally important to expose her to the world. With everything relative to having a child with special needs, this topic too is a fine line to navigate.

So to celebrate this new sense of freedom, we're taking Mackenzie to my Dad's house this Saturday. (It's only 10-15 minutes away, so big woop but it feels great to be able to get out!) And I'm planning a trip to the Ripley's Aquarium in Myrtle Beach (about a 2 to 2 1/2 hour drive from here) for a Saturday next month. I think she'll love seeing the fishies and I can't wait to see the look on her face. Now I have to find a good day to take her to the park... and decide which park we want to venture to.

Wow. Can I just say it feels like a weight has been lifted off my shoulders? I feel like I can breathe!

Appointment Update

2009-05-27T09:42:00.003-04:00

Mackenzie did extremely well yesterday. (Btw, of course it was rainy and dreary.) Anywho, Andy and I were thoroughly impressed. :o) She didn't require a lick of O2! We left her on her HME and only put her on her vent (CPAP) when she was sleeping... and it worked beautifully. At first I wanted to see what she'd do without the CPAP while napping, but it didn't go very well. Her respirations went into the 70s and 80s and she dropped her sats to 91. She was also pulling her shoulders. Arg. Durn HME. I put her on her CPAP and her respirations immediately went into the 30s and 40s, and her sats went up to 96. So for the rest of the day when she dosed off we'd hook her back on to the portable vent and she did beautifully. She was more comfortable yesterday than I'd seen her in a very long time.

Pediatric Pulmonary Clinic was a breeze. Dr. N prescribed Mackenzie's Pulmicort as a preventative. Her lungs still had quite a bit of rhonchi and wheezing, so we'll be giving Mac breathing treatments twice a day of Pulmicort and still Xoponex as needed. The trach nurse came and we discussed upsizing Mackenzie's trach. Her next bronchoscopy was scheduled for August, but they're going to make it sooner to address the leak. We're also concerned about micro-aspiration while nippling (Mackenzie gets really "wet" while nippling and requires frequent suctioning), so the trach nurse is going to set us up with Speech at UNC and get another swallow study done. We were told to continue what we're doing as far as the weening off CPAP goes - just using our judgment on when we feel that she needs it... which right now is only at night unless we're out and about. It's now been deamed her "security blanket". She's on such a low PEEP that there's no sense in lowering it more. It's just a matter of transitioning her to trach collar 24/7. Dr. N was impressed with the progress she's made since February and I have to say that it is all because of Cape Fear Valley NICU. They had a great plan for weaning her off of SIMV and they took their time with her, as opposed to pushing too hard, too fast. I have a mixed bag of feelings about their NICU, but I know with 100% conviction that they're the reason Mackenzie finally made it off SIMV before coming home.

The only hiccup with our pulmonary clinic was when they had to draw labs. Mac's such a hard stick and it was n-o-t pretty. They had to call in the PICC team, but after they were finished Mackenzie completely zonked out. Poor baby! I asked for a heel stick but they wouldn't do it. Drat.

Nephrology clinic was easy peasy as well. We're still waiting on a cuff in order to take Mac's blood pressure twice a week to get a good assessment of how it's ranging. Her systolics were still rather high (117), so Dr. G thinks the biventricular hypertrophy is most likely still a large problem. She's sending Mackenzie for an echocardiogram to check on her heart and see if it's gotten worse or better... and in th meantime she's changed up the form of the BP meds (we were getting a liquid suspension whereas now we're getting pills to crush ourselves) and did a slight increase. Once we get a couple weeks of blood pressures, I'll shoot her an email to let her know what they are and then she'll increase the meds if needed.

Mackenzie slept the entire drive home, with the exception of about 10-15 minutes where she stared at me while I was eating. Quite rude! :op Aaaannnddd I'll end this post with a pic. Enjoy!

Terrif

2009-05-26T22:33:00.001-04:00

Everything went well. I'll post more tomorrow!

Happy Memorial Day :o)

2009-05-25T21:51:00.003-04:00

Happy Memorial Day!

Mac and Daddy hanging out in bed. :o)

Trying to help with trach care. Not too much longer before she should be able to do it herself. ;o)

Aaannnndddd Mommy decorated Mac's vent. ((Don't worry it's just an aplique that peels right off.)) I also put a couple on her oxygen concentrator, portable vent, and pulse ox. Hehe.

Today has been a lllooonnnnggg day! It was filled with packing and repacking for our trip to UNC tomorrow. Oye I'm nervous!

The highlight of the day was when Mackenzie's extension tubing miraculously came off of her MicKey button... causing half her feed to end up on the floor. Needless to say we had to steam clean her carpet. So Mackenzie hung out in our room and watched "toons" with Daddy. :o) She seemed to enjoy it. She was satting 99% on just her HME. (Woohoo!)

Tomorrow we're waking up at 5am to load the van (some of it we can't preload and I don't want to panic thinking we left anything). Then we're on the road at 7am. We have pulmo clinic at 10am and nephrology at 1pm. We're going to give our primary day nurse a call when we finally leave UNC so she can meet us at the house. She's going to be here from when we get back (probably about 5pm?) and stay until 10pm when our night nurse gets here. Once we unload the van when we get home, Andy and I will probably crash. :o)

Quick Pic Update

2009-05-24T22:52:00.006-04:00

Mackenzie's first walk was a success. Actually, to be completely honest... she seemed a little bored with it. BUT! Boredom is better than her throwing a fit. :o) I think the timing was a little off too. She was tired and ready for bed. She completely crashed after her bath when we got home. :o)

Anywho... here are some pics from yesterday and today. Enjoy!

Attempting to eat her receiving blanket... yum!

Mackenzie's first walk!

Sssttttrrrreeeeeeetttttcccchhhh! (Mac waking up for the day.)

Nothing beats sucking on an arm first thing in the morning. ;o)

Surprise visit from my best friend just before bedtime.

Mackenzie and her uncle Craig.

Strange

2009-05-23T18:23:00.004-04:00

It was a very strange morning. We opted to have day nursing every other weekend for the time being, and this weekend is our time without. So I woke up at 5:45 to releive the night nurse and went about piddling around the house. Then I hear Mackenzie's pulse ox go off, so I go to check on her and it's reading 79% with a good wave form. I look at her and sure enough, she's dusky. I flip on her oxygen to 1/2 a liter (I had just suctioned her a few minutes before) and she pops up like nothing ever happened. She goes back to being pink and fine. I give her a little time before cutting off her oxygen while I check her vent to make sure her settings are fine and check the vent circuit for any issues. Everything's the way it's supposed to be and her breathing is normal. Then later on right before I was getting her dressed for the day and had her on her trach collar, she has another episode and drops down to 80%. I turn on her oxygen again and she came back up with no issues.

Aside from the desats, she's perfectly fine. No fever, no increased work of breathing, nada. I'm wondering if it might be related to her leak with her trach. I doubt it, but it's a possibility. Perhaps she was just having one of those mornings! We're all allowed to have an odd day. :o)

In other news Andy and I plan on taking her for her first walk in a little while (after she's finished digesting her dinner). It's just going to be around the block and I'm curious to see if she'll like it. Typically she hates the wind and sun, but the sun should be starting to set soon.

Oh! I never uploaded a pic from Andy's birthday. Enjoy!

Daddy and daughter with the icecream birthday cake. (Yum) I caught Andy mid sentence. :o)

And here's Mackenzie just hanging out in our room in her swing. :o)

The powers of Desetin and Oxygen!

2009-05-21T21:50:00.002-04:00

You know in the movie My Big Fat Greek Wedding how the father says windex is the cure-all? I'm challenging that with desetin and oxygen.

Mackenzie has extremely sensitive skin - barely touching her, you can leave a red mark. So, of course, we have issues with her MicKey from time to time. For several days it had her skin extremely irritated. The pediatrician suggested aquafor which did absolutely nothing. Then some trach parents suggested desetin and not even 24hrs later the site was 98% better. Completely amazing stuff.

Following on the same lines, Mac is on antibiotics and it's giving her a horrid diaper rash. We go down this road every time she's on antibiotics. Last night I decided to blow oxygen into her diaper (using her concentrator) while she was sleeping and use desetin at every diaper change during the day. The oxygen is a trick we learned in the NICU and it works like a charm. We cranked the concentrator up to 5 liters (the max) and brought in her portable tank just incase Mackenzie needed some O2 through the night - which she typically doesn't, but we always like to be prepared. Sure enough, her bum looks much better.

Yay!

Trach Leak

2009-05-20T12:49:00.003-04:00

We have pulmonary and nephrology clinics on Tuesday and to say that I'm nervous is a gross understatement. I think the clinics will go well, but having Mackenzie out and 2hrs away from home for the entire day is what's getting me. She gets worn out just going to the pediatrician's office which is on the other side of town.

In semi-related news, several nights ago I woke up in a mild panic. For whatever reason I realized I had forgotten what Mackenzie sounded like. She wasn't much of a crier before her trach, and even when she did it wasn't her "true" cry because of the hemangioma. I remember it being a sad and soft cry, but I don't remember the cry itself and that sent me into a downward spiral of emotions (although I'd like to think I put on a nice poker face). If Mackenzie were decannulated today and put in a room with 99 babies, and one of them started to cry I honestly can't say that I would know if it was (or wasn't) her. I know the day will come and we're so very fortunate to be able to say that, but sometimes it doesn't make it any easier or harder to swallow while in the moment.

Then, as an ironic twist, on Saturday we noticed Mac had developed a leak around her trach and was (and still is) making some noises around it. No laughing or cooing, just mainly bits of crying and coughing if she works up enough.

I sent an email to our trach nurse about it and she, in turn, sent a message to our pulmonologists who is out at a conference for the week. We'll be addressing it on Tuesday and assessing if her trach needs to be upsized. I'm really hoping it does. Her 3.5neo is ridiculously easy to plug when her secretions get nice and "gummy", and we've had a few unscheduled trach changes because of minor plugs. A larger trach means a larger airway, which in turn reduces the severity of complications from a small thick secretion. I know that in upsizing, we won't be able to hear her again, at least for a little while... but I'd much rather her have a safer airway.

Ugh. It's enough to make Barney depressed.

Mackenzie's newest accomplishment:

2009-05-19T07:32:00.004-04:00

Reaching!

She just started doing this the past few days and it's very exciting. :o)

Mackenzie's physical therapy evaluation went well yesterday. She has low muscle tone in her neck, shoulders, and stomach so that will be our main focus. The PT was also concerned about Mac's right hip being a little tight and that she was crying and grimacing when the PT did range of motion exercises with it. I'm sure we'll figure out more about it when our regular PT starts to come.

Short and sweet post today. :o)

Happy Birthday Daddy!

2009-05-18T08:54:00.001-04:00

You're the bestest Daddy every. :o)

Love,
Niff and Mac

The nurse asked for a smoke break.

2009-05-17T11:37:00.003-04:00

Our primary daytime nurse asked me one day if we had ever had a nurse go outside to smoke because she had heard of nurses doing that. I laughed and said "They better not!"

Well we have a new nurse here and she asked if she could go outside for a few minutes since my mom was in the room holding Mackenzie and playing with her. I said sure... then I saw the cigarette pack come out and told her that we don't allow smoking. She looked a little baffled and taken aback. She asked if it was okay even if she went outside and I told her no because she would bring the smoke back in on her clothes.

I understand not everyone shares the same views on smoking around children, but smoking while taking care of a trached kid with lung disease... really?

And then you question what she would have done had no one been here. Would she have left Mackenzie in her room while she went on the porch to smoke? Oye.

I'm putting in a call to the agency once the nurse leaves to let them know we don't want her back and to forewarn all the nurses they intend to send out that we don't allow smoking. I thought this was a given, but I guess it takes all types.

Thoroughly Exhausted

2009-05-15T21:21:00.003-04:00

Backing up, yesterday Mackenzie just wasn't herself. Then around 3 or so, she had thicker secretions and I could hear that there was a mini plug that I just couldn't get out. Since she already had increased work of breathing, I didn't want to wait until Andy got home to change her trach so I did it by myself. I actually wasn't nervous to change it by myself like I thought I'd be. It was just one of those things that I felt needed to be done at the time. When I pushed the obturator through the old trach, I didn't see any secretions that would have been a huge deal but better safe than sorry with Mac.

So today we went to the pediatrician, but for whatever reason they didn't schedule me with "our" pedi - instead they scheduled us with someone else in the practice who has no clue about Mackenzie's medical history. *cue headache* I explain to the doctor, in short, what was going on and that I suspected Mackenzie might have tracheitis as a result of her aspiration episode on Sunday. (Everything she was doing was similar to what she's done in the past when she's had tracheitis.) The doctor asked why I didn't take Mackenzie to the ER yesterday and I almost laughed out loud. I told her that I didn't feel it warranted taking her in because it was something that I felt comfortable managing at home. (Geeze, if I took Mackenzie in for belly breathing every time she did it, we'd be in the Children's Emergency Department every day!)

Mackenzie was up to 31% oxygen while we were at the appointment, but her nurse and I think it was more so that she already wasn't feeling well and then the stress of bringing her out and about (which I think has been proven since she's on room air again now). The pediatrician called the hospital and told us that we needed to take her to the ED and they would admit her into the PICU to run the tests and "stabilize her" (which I didn't understand since she was already stable). So we left and headed to the hospital, all the while with me fuming mad because had I know we would have ended up in the ED anyway I wouldn't have bothered making an appointment.

We get to the ED and I go in to ask if they have a room available to put her in (because the pediatrician said they would - which they didn't, btw but no biggy), or at the very least oxygen I can connect her to so I'm not bleeding my tank. The charge nurse comes out and he happens to be one of the parents we knew from the NICU. I told him everything that was going on and that I truly felt it was overkill that we were sent to the ED, especially when they could have sent us to outpatient treatment to get the tests done and be back home. I think the pediatrician panicked a little bit in not having any experience with Mackenzie, and while I appreciate that she took matters seriously, it was a bit much. The charge nurse put Mac in one of the triage rooms and a few minutes later transferred her into a room with a nice "isolation" sign. :o)

They did a chest x-ray which was pretty much the same as the last few x-rays (fairly icky looking because of scar tissue). The doctor came in and I explained to him everything that was going on and that I genuinely felt it was just some simple tracheitis going on because of the aspiration episode and that I felt comfortable managing Mackenzie's treatment (if he thought she warranted treatment) at home, rather than admitting her to the PICU. He asked what antibiotics they used in the past, and I told him they were IV and I would prefer oral or even inhaled Tobi. He went to call Mac's pulmonologist to get their advice on antibiotics, and in the mean time ordered a tracheal aspirit.

Oh, on a semi funny note... At this point Mackenzie was still on her HME and she was getting really tired. I was told by the pulmonologists not to let her sleep with the HME on, but we didn't have a trach collar around so I put her on her home vent while she took a nap - making sure to let the nurse know that I didn't think she was getting worse, she just doesn't do naps well especially on an HME she's still getting used to. One of the RT's came in to do the aspirit, looked at the vent, and asked if I had any questions about the home vent. Yeah, it puzzled me too - I have no idea why he asked me that. I certainly wouldn't bring her to the ED if I didn't understand the vent. I also thought it was entertaining that he thought our home suction equipment was portable oxygen. Especially when it had suction tubing hooked to it with catheter attached. :op Maybe he was just tired. :o)

Anywho, the pulmo said to go with augmentin and if the aspirit came back with a different sensitivity then they could change it up. So we're doing Augmentin twice a day for 10 days. We're supposed to follow up with our pediatrician on Monday. I'll give her a call but I really don't think it's necessary to bring Mackenzie back out, but it's whatever she thinks is best and feels comfortable with.

We finally got home at 6 and Mackenzie was extremely cranky. Not only had she not napped well today, but I think her gums were hurting too. (She's been cramming her hands in her mouth and biting on them.) At one point she was just inconsolable, so I gave her some tylenol and it seemed to do the trick. Shortly after she stopped crying and instead of biting on her hands, she was just sucking on her fingers. She's now sleeping peacefully. And Mommy is completely exhausted. Once our night nurse gets here, I'm crashing! Thankfully Andy's in Mac's room now so I can relax a little.

Coming down with a little something.

2009-05-14T13:00:00.002-04:00

Mac seems to be coming down with something. She's doing quite a bit of belly breathing with slight retractions, she's tachypneic (although not horrendously so), has been coughing more than usual, and has a slightly elevated temp that is still within the range or normal but high for her. Her lungs sound awful too. :o(

We have an appointment with the pediatrician tomorrow and she'll take it from there. Right now I don't see anything that I don't feel comfortable managing at home, and we'll continue to watch her like a hawk. I think this is related to the aspiration episode on Sunday morning.

Oye. Poor girl.

Time does wonderous things.

2009-05-12T17:43:00.004-04:00

Mackenzie was trached 5 months ago, and it's crazy to think of how far she has come. One phrase that Andy and I routinely heard in the NICU was "Time is on [our] side." Of course, I didn't take that very well because I wanted her to be okay in that very moment, but as Mac thrived it became more and more real... and I'll grudgingly admit they were right. ;o)

So cheers to time and may the next 5 months be just as promising. :o)

December 12, 2008

May 12, 2009

Aspiration... Happy Mother's Day!

2009-05-11T10:06:00.003-04:00

Mother's Day started out with a bang. :o) Mackenzie vomited and managed to inhale some of the vomit into her trach. Andy was with her and yelled for me, so when I came rushing in he had her on her side and I suctioned out some of the formula. Mac started dropping her sats and we had her on 2 liters of oxygen for a few minutes until she settled out. We called the oncall pulmonologist who suggested we do chest PT, use extra saline when we suction, and keep an eye on her temperature and any signs of increased work of breathing. Andy and I decided to change her trach too, just incase any bacteria wanted to hang out.

So far so good and we haven't noticed any changes. I'm really hoping this blows over and nothing comes of it. I think I'm going to keep a log from now until we see the GI specialist on how often Mackenzie's vomiting and if she gets it in her trach, so I can make another plea for a Nissen. I know the argument I'm going to face is that she's thriving and gaining weight, so the spitting obviously isn't bothering her... and I agree that if she didn't have a trach, I wouldn't be pushing for it. But she has a direct airway that can't protect itself should vomit (or anything else for that matter) get in it. I'll just do some research and have to have my ducks in a row before the initial consult.

PS - If my psorasis gets any worse I think I'm going to request a skin transplant. :op Arg. I know it's stress related, but geeze louise - go away already!

"Thoughts of a Mom" -- Maureen Higgins

2009-05-10T08:00:00.002-04:00

I saw this on another trach mother's blog, and wanted to post it. Happy Mothers Day ladies.

Thoughts of a Mom

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.

You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Carrots = Thumbs Up!

2009-05-09T22:24:00.006-04:00

I made a trip to Babies R Us to get the carrots I mentioned in the previous blog, and we gave them a whirl today. Mackenzie did great with them. :o) She was really into tasting and sloshing it around with her tongue, although she wasn't too sure about it at first. She didn't cry or gag like she does with rice cereal, and even tried munching on her bib. Mac's still pushing out with her tongue, but she'll get the hang of it. ;o)

Here are some pics of the adventure. I realized midway through that we should probably put a bib on her (d'oh!). Luckily her white shirt didn't stain. Aaannddd silly Mommy and Daddy forgot to turn the TV off, which is why she's pretty focused on something to the left. Anywho... here ya go!

The Before Pic:

"Okay... what's going on?"

Sucking on her tongue. :o)

...then her fingers...

I can't decide if she was eating some of the carrots off her bib or just trying to chew on it. Maybe a combo of both?

I asked Mackenzie what she thought of her carrots and if she wanted to try again tomorrow. This was her response:

And finally having her 3 o'clock lunch after a quick outfit change. :o)

Slew of Updates

2009-05-08T20:45:00.007-04:00

We're officially stocked with Benadryl, so we'll be giving Stage 1 baby food a try tomorrow. We use Earth's Best organic and I'm not entirely sure which veggie to start with. I was told by another Mom that carrots would be best since they're so easy to digest, but ironically enough that's the one flavor they sell that we don't have. For some reason they don't sell the carrots at Target. :o(

For a few days it appeared that reflux had taken over. Mac was spitting every feeding, and with a few close calls with aspiration we were turning into nervous wrecks when it was time for Mac to eat. I think we've found a position that works well (thanks to our case manager with the CDSA) and it seems to have made a world of difference. We've only had 2 spits today - one of them being pretty small. The pediatrician is referring us to a GI specialist at UNC. I don't see them recommending anything different that what we're already doing, so we'll see.

Unfortunately, Mackenzie has taken a huge step back with oral feedings since coming home. It's quite literally the only thing she has regressed with, and I'm wondering if it's related to all the spitting. She doesn't gag (for the most part) when the nipple is in her mouth, but she prefers chewing on it and rolling it around to actually sucking on it (which may be secondary to teething, but I'll get into that in a sec)... and the few times she does suck, she instantly gags when it hits the back of her mouth. I wonder if she's associating the reflux/spitting with something being in the back of her throat, so she instantly feels uncomfortable with it? She did that a couple days after we were discharged from the UNC PICU with suctioning (she would cry whenever she saw the cath) and trach care (she'd get fussy anytime we touched the back of her neck), so it's possible. We'll be having a speech therapist come out to help us on this front.

Teething is underweigh and poor Mac is starting to get a little fussy. Her naps are fairly short (albeit frequent) and she typically wakes up crying and shoving her hands in her mouth to chomp down on. She also likes "chewing" on her trach mask. We gave her a little bit of oragel earlier and ended up breaking down and giving her some tylenol around 4:30. It seemed the tylenol really helped because she drifted off to a peaceful sleep and wasn't upset when she woke up.

I'm trying to figure out the settings with the mist collar. We've noticed that it's making Mackenzie's lungs pretty wet, so I'm fine tuning the amount of mist. I think I may have found the right settings that don't dry her out but don't make her extremely wet either. I just listened to her a few minutes ago and her lungs sound clear, whereas for the past week(ish) there's been screaming rhonchi. Fingers crossed that I cracked the puzzle.

As far as making progress toward getting off the home vent at night, Mac is having issues oxygenating while asleep on the trach [mist] collar which isn't anything new. She get's tachypneic and does quite a bit of belly breathing, and typically requires 1/2 a liter of oxygen (sometimes 1 liter if she's really out of it). Apparently the night nurses have had to occasionaly give Mackenzie a little stim midway through their shift (when Mac is on her vent) because she gets in such a deep sleep she sets off the Low Minute Volume alarm and drops her sats shortly after. They tickle her feet or rub her side and she comes back up. I don't remember this being a problem in the NICU, but then again she gets tons of stimulation here so by the end of the day she's tuckered out. The past two nights she's been asleep by 8:30.

But anywho, things are going well and while Andy and I curl up in bed exhausted by 10:30, it's entirely worth it and we can't imagine anything better. It seems every day Mackenzie is doing something new and I didn't realize she would blossom so much in such a short time. We've only been home from the PICU 10 days, yet it feels like much longer.

Pediatrician Adventures!

2009-05-05T08:45:00.006-04:00

Yesterday was Mac's first appointment with the new pediatrician. It went really well and no changes to report... other than we get to start baby food! I told Dr. B that she is putting things in her mouth and tolerating that, but she doesn't like nipples and she's not a fan of the rice cereal. Dr. B said it would be okay to start stage 1 fruits and vegetables, but to start with really small amounts. Our goal isn't really for her to eat a lot of it, but to get her accustomed to the taste/texture. So we'll be giving that a try this afternoon and see how she does. I was originally going to wait until Mac was 5 months adjusted (right now she's 4 and 1/2) before starting baby food but we'll see how it goes today and take a step from there.

UNC PICU had gotten two of Mac's meds mixed up and were giving her incorrect doses, but the pediatrician didn't think it was a major problem. We'll get labwork done in a couple weeks before we go to UNC for pulmonary and nephrology clinics to make sure everything's going well.

We had our first event of a nurse falling asleep on duty early this morning. Oye. I called the agency and let them know what happened and that we didn't want her coming back. I called it last night that she would fall asleep. Good ole Mommy Gut.

I'm off to take a quick nap. )

Oral Aversion = Nipple Aversion

2009-05-04T09:39:00.002-04:00

I've come to the conclusion that Mackenzie doesn't have an oral aversion, simply an aversion to nipples. She has progressed to mouthing on things, including her trach mask, but still is not a fan of nipples (whether they be for bottles or pacis). Yesterday she took her rice cereal like a champ and seemed to enjoy having it in her mouth, although she went into a gagging/retching fit when it hit the back of her mouth while she was attempting to swallow.

We survived our first day without nursing. I actually enjoyed not having nurses around, so after Andy and I talk about it we may continue with our original plan of getting rid of day nursing on the weekends while keeping night nursing.

We've had to cut back our trach care to once a day. Mackenzie hates when other people help me do it besides Daddy, and has become extremely sensitive about it. For a few days if you put her hand behind her neck, she would cry and trash about. :o( It makes me wonder if she feels any pressure from the hemangioma and if that makes her sensitive as well. She would have to feel something, right?

Alright, I need to keep packing for our trip to the pediatrician's. So far I've already gotten most of the portable equipment (oxygen tank, vent, battery, and suction machine) in the car, but I'm checking and rechecking our bags to make sure we have everything we might possibly need.

Bounce Bounce

2009-05-01T23:12:00.004-04:00

Mackenzie has been a bit cranky the past couple of days when it got to be 5-ish. I'm not sure if she gets tired by that point or if she's teething. Andy thinks she's teething because she'll wake up crying, she tries to suck on everything that touches her mouth (except a nipple of course), and she's a bit more drooly. We have a pedi appointment on Monday and I'll ask Dr. B about it. :o(

So far we really like our nurses. I wish things weren't so hectic as far as getting nurses oriented goes. We get told at the last minute that a nurse will be out to orient and that can be a little frustrating. But overall, the nurses are terrific and Mackenzie seems to really like them. :o) Her nurse tonight's son was actually trached for 6 years (since he was a baby), so it makes me more comfortable that she knows what to do. I think the only little hiccup for her was the vent, but it's fairly simple to watch at night once you understand the alarms. I was nervous about being able to "get along" with the nurses, but so far the agency has sent out a great crew.

We had our first unscheduled trach change today. We had just changed Mac's trach last night, but today she was doing some nice belly breathing and her secretions had turned thick (probably thanks to a malfunctioning mist compressor which we had to get switched out - it happens, I'm just grateful we have such an amazing RT). I suctioned Mac, but could still hear some goobies and felt like I couldn't get them... so I just decided to change the trach. Sure enough there was quite a bit of secretions stuck to the inside of the cannula.

Anywho... on to the pictures!

Andy and I decided to see how Mackenzie felt about her Bounce Bounce. She was really excited about it, but she's a bit too short and doesn't have enough trunk control to stay in it for more than a few minutes. Here are some pics:

The initial reaction of being surrounded by toys.

The "Hey... I like that" look.

"Dad, did you see this?! Check it out!!!!"

Getting a bit up-close and personal with the turtle mirror. (She even started trying to suck on it!)

Picture Update!

2009-04-30T22:16:00.006-04:00

Sorry it took so long. :o)

This is Mac's final moments in the CFV NICU.

Here is Mackenzie watching Noggin in her bumbo. I think she would sit and watch it all day if we let her - which we don't because it drives Mommy crazy. ;o)

Miss Mac sitting on Daddy's lap with her HME on. She still had the trach collar on because occasionally she'll need a boost of oxygen. It shifted while she was getting excited with having her picture taken - I promise we don't let it blow on her cheek all day. (Btw, today she tolerated having her HME on for 20 minutes! Progress!!!)

Another pic of Mac being a cutie pahtootie.

And Mac loving the attention some more.

As you can see, Mackenzie is LOVING being home. She has discovered the art of "If I cry, someone will hold me" so laying her down for naps is getting more and more difficult. Of course this just makes her a little cranky but she does well at night. Mac is truly blossoming before our eyes.

Great Day :o)

2009-04-29T22:21:00.002-04:00

It's 10:20pm and Mackenzie is sleeping peacefully after flirting with her Monkey Show. :o)

Today was exhausting yet fulfilling beyond words.

The CDSA (Children's Development Services Agency) was over this morning for introductions, evaluations, and paperwork. Our Eligibility Assessment Summary put Mackenzie's delays into numerical form and it became a bit more palpable. The largest delay was in her gross motor skills (86% behind other 7 month olds and 75% behind other 4 month olds). Ms. "B" did say that the assessment wasn't entirely accurate and didn't account for all the medical issues going on, but it did take a second to really think about things.

There is a lot of pressure placed on parents of premature children (and children with special needs) to get them up to speed, so to speak, from a developmental standpoint. Although I highly doubt the NICU intended it to be taken negatively, Mackenzie's development has always been a major sticking point in her care. I was always reminded about the importance of doing developmental exercises and it stuck with me. When Mackenzie wasn't smiling or interacting, I would automatically freak out that she wasn't even staying up with children of the same adjusted age. I think part of this was because I felt so pressured to keep her on track. Even now when I read blogs of other kids who were born the same month Mac was due who are sitting up on their own, grabbing at toys, eating baby food, etc I get a little upset - not because I'm jealous but because I'm afraid that perhaps I'm not doing something right and I'm holding Mackenzie back.

But I must say that after today, I feel like I've turned a corner in this department. When I saw the numbers, I didn't panic (and I'm sure this was partly because of the wonderful women at the CDSA). I'm not super mom and, sure, there may be developmental exercises that we can be doing that I don't know about, but that's what the CDSA is there for. Plus Mackenzie is Mackenzie and she's not going to do anything a second before she wants to. At the end of the day, I've tried my best and that's all that can be expected.

On a different note, today was our first day of having Mackenzie home and to ourselves for a portion of the evening. We're at 20hrs of nursing care, so from 5pm until 9pm it was just Andy and me. It felt great. We had her on the floor (on her quilt of course) and we played and watched Noggin (which she LOVES). Aside from suctioning and watching the pulseox like a hawk, it felt like we were a "normal" family just enjoying our time together. The nurses that we have are terrific, but it feels relaxing and peaceful to have Mac to ourselves. What's even better is that we feel more confident in our ability to take care of her thanks to all the extra training we got at UNC.

Mac's doing great on the trach collar. She's still getting tachypneic while napping and requires a little boost of oxygen (1/2 a liter which is only about 24%) but overall is doing wonderfully. I'm hoping that by the time we go to Pulmonary Clinic at the end of May that Mackenzie will be doing better with her naps and hence give us incentive to try her for longer hours at night. We just got in our box of HMEs today, so we'll be trialing those during the day tomorrow as well.

Oh, and apparently one of the members of the pediatric transport team for UNC is interested in becoming one of Mackenzie's home nurses. This lady is absolutely wonderful and has literally transported Mackenzie every single time we've gone back and forth to UNC. She's going to get up with our nursing agency and go from there. I think it would be terrific if they could work out the details and scheduling. :o)

Alright, I'm off to get some sleep. It's now 11:27 pm and Mommy is sleepy.

Today is the day! (Take Two)

2009-04-28T09:51:00.002-04:00

Mac's coming home again. :o)

The trach nurse has requested (and arranged) for Mackenzie to be taken to the house by ambulance. There was a lot that was covered yesterday and some things we don't have on us (like our nebulizer) so she said she would feel more comfortable with the ambulance - especially if we were to get caught in traffic. Given how touchy Mac's secretions are, I was nervous to have Mac in the car for so long (we live an hour and a half to two hours away) without being able to give her a neb treatment if needed.

There are some last minute details to go over and instead of bagging Mackenzie we'll be bagging a trach doll. If Mackenzie were riding the vent, the trach nurse would want us to bag Mac but since Mac isn't used to manual breaths anymore she might fight it and go into respiratory distress from being bagged. Scary. So we'll get a feel for the new ambu bag and how much pressure to apply, as well as how many breaths at what interval to give.

Alrighty, time to pack up. I'll update later.

Mac's Tune Up

2009-04-27T18:03:00.005-04:00

This is what the trach nurse at UNC calls our visit to the PICU - a tune up.

Today was fantastic and I have learned quite a bit. We spent some time gathering ideas for a more personalized care plan for Mac. I'll try to sum things up and I'm sure other trach moms reading this might find some of the information pretty helpful.

***Bivona trachs are made of a silicone material as opposed to the PVC of a Shiley trach. The silicone holds on to secretions much more, thus making it easier to get a plug. Because Mackenzie is only in a 3.5 neonatal trach, the chances of her plugging are pretty good (plus she has incredibly thick secretions). So we were told to change the trach twice a week.

***On the same lines of trach changes, anytime Mac gets a plug we are to change it out. Of course, we should wait until after she's settled out a bit. The idea behind this is that if there's one plug, there might be another one starting or residuals left over. We should also change the trach if/when Mackenzie has increased work of breathing but her lungs sound fine. (Chances are there's a plug.)

***Pretty much always use a couple drops of saline before suctioning, which is the opposite from what we were told at our home NICU. Mackenzie's secretions are so thick that they need some thinning. If the secretions get out of control (with respect to their thickness), then we're to give a saline neb treatment - which involves just using a saline bullet in her nebulizer.

***Suction to 7cm on an 8fr catheter and "pleasantly demand" others do so as well. Can you believe we weren't suctioning deep enough?! Two NICU nurses measured it out in February to 6cm, but it was decided 7 was better now because of the thick secretions and the fact that we had more space before hitting the corina. I told the specialists today about an RT at our home PICU who claimed that Mac was fine with just tip suctioning, and they looked a little horrified, especially after she had plugged off twice that day.

***Suction every 2 hours, even if she doesn't sound like she needs it. This should keep her lungs from getting "tight".

***No more in-line suctioning! Apparently inline suction is the debbil (my words not theirs). It may be convenient, but it doesn't really help get all the secretions because you can't twirl it around the sides of the cannula. (I think this is just going to depend from child to child and how their secretions are.)

***We were able to find the right "size" HME for Mackenzie's weight. It's the humid vent mini. Mackenzie tolerates this one for about 15 minutes, so we were told to keep trying it and when Mac's had enough to put her back on her trach collar (if we're at home).

***When we're out and about to doctor's appointments, we'll start off with Mac on her HME. When she gets tired, we'll connect her straight to her ventilator (without an HME) and when we hear her get dry we'll give her a saline neb. Mac should be fine in the car for a couple hours without drying out completely, until we can get to a place to give her a neb treatment and hook her up to a humidified system.

***We'll be using Xopenex nebs as needed for tightness/wheezing and saline nebs to help thin secretions and get them moving. If we're having to give Xopenex treatments more then 2 or 3 days in a row, it may be time to start Pulmicort and we should discuss it with the pediatrician or call the pulmonary team.

***In the event of an absolute emergency, call 911. If we are concerned about things and confused on what to do next, call the pulmo team. Leave the pediatrician out of the picture.

So anywho, Mac is on the trach collar during the day and on the home vent at night. We will also put her on the vent during the day as needed, although so far she's done great. We've noticed she gets pretty tachypneic (breaths fast) when she's napping on the trach collar, but so far we've let it be since she doesn't nap too long and she settles out once awake. If she hits the 80s then we'll put her back on. We're all delighted (and shocked) with how well she tolerates the trach collar and I've had to resist the urge to call Dr. C at our home NICU and apologize profusely for not trusting his judgement.

Her meds have been rearranged, so I'll get a copy of what times they give them. We were told that her sodium chloride supplement can be extremely hard on the gut and cause problems, so it was suggested that we put this in her feeding bag (with the full feeding) instead of inserting it through her g-tube during the feed.

Tonight we will be bagging Mackenzie to get a feel for it. The resuscitator bag we were sent home with from the NICU is too small for her (it was an infant size and she needs a pediatric - the infant size would work in an emergency, just not as well). They will be giving us their bag, which comes with a handy dandy pressure meter. I think they're going to show us bag suctioning which is where you put a couple drops of saline in the trach, give Mac a few manual breaths with the bag, and then suction her. We've never bagged Mac before, so it will be good to have this experience should we need to in the future.

Apparently our ENT wanted to see Mac the day after we were discharged from the NICU. We were supposed to have ENT clinic tomorrow, but I called and told his nurse that we were "in house". We're not sure if he'll come down and take a peak at Mac tomorrow (or tonight) or if we need to schedule another appointment.

Oh, and we officially switched pediatricians and will have an appointment with her on Monday. I have faith that it will go much smoother.

I'm sure there's a million things I'm forgetting, but that's pretty much the gist. We're very glad we were transferred here and had the opportunity to get so much more "in-depth" training. I'm afraid to think of what would have happened had we gone home again from the CFV PICU instead of being transferred. I feel more confident that all our bases are covered and that things will go well this second trip home (which should be tomorrow).

Coping

2009-04-26T19:35:00.005-04:00

There is a new parent on the trach board who made a post about how she wants her son's trach out "now" and she never wanted to post on the board because she kept thinking the trach was a passing thing. Bless her heart for being so open and honest. It made me think back to when Mackenzie was trached and I cried. Actually, I turned into a blubbering mess.

Mac's trach was so unexpected it didn't even register on our radar. I remember giving consent to an emergency trach during her bronchoscopy if needed, but was told it was extremely rare. While Mackenzie was down in the OR, her nurse calmly pulled Andy and I aside into the NICU family room and told us they had to perform the tracheostomy but she didn't know the specifics on why. I looked over at Andy who was teary eyed and nothing hit me. I wasn't upset, I wasn't scared, I wasn't anything. I was just there. Later that day I remember thinking "That's fine, it's only a temporary thing. They'll take it back out in a couple days and everything will be back to normal." When the nurse said that Mackenzie would have it at least through winter, I truly felt that they would make an exception. They had to. And when we found out that it would be at least a year because of the hemangioma, I focused on that year mark. I could handle a year.

When the hemangioma came back full force in February, I had prepared myself for bad news. At that point I knew enough about hemangiomas that it would more than likely have grown back since the original excision in December, although there still was hope. I also did research and found varying information on how long it takes for them to typically go away. The fact that it was now occluding 90% of her airway was what really hit me the hardest. There were a million questions racing through my head (could it cause damage being the most prominent), but very little "sound" answers.

I struggled to cope with having a premature baby. I felt like a failure of a mother (after all, who can't carry a baby to term - it's what women were designed to do). I spent days crying and apologizing to Andy for putting him through this and not being a better mother who could protect her child through the full 9 months of pregnancy. But coping with a trached child hit a whole new relm of emotions, and all I can really say to describe it is that I mourned (and still do). I missed hearing Mackenzie cry and whimper, and the idea of not being able to hear her laugh or coo shattered my heart. I think the most accurate way to say it is that I mourned the death of "normalcy".

Somewhere in the past 7 months I adopted the Murphy's Law approach - what can go wrong, will go wrong. I was a [mild] pessimist to begin with, but when I felt like I kept getting bad news after bad news after bad news, I stopped imagining the best. It hurt too much to be optimistic and then have that world shattered. I was so certain after Mackenzie was trached that she'd be off the ventilator in 48 hours, that when she took several months I lost hope. Every two days when our home NICU increased the amount of time Mac was on CPAP and told me she was doing great, I fought it. She wasn't doing great - she couldn't be doing great. I looked for ways to prove she wasn't tolerating it because my heart couldn't grasp the concept of something I wanted so badly coming true. Even now, seeing Mackenzie tolerating hours of trach collar, I struggle with accepting it. I'm afraid to admit she's doing well because if she backtracks, I may not be able to handle it.

To be completely honest, I can't imagine having a child without a trach. I know in my head that day will come, but my heart just can't handle the disappointment if it doesn't come as soon as I anticipate. So I just stop anticipating it. It will happen when it happens, and until then I can't think about it.

Update

2009-04-25T16:39:00.002-04:00

We're at the UNC PICU and things are going really well. We're in the process of getting the infection taken care of and figuring out Mac's respiratory needs. Right now she's on a trach collar and switches over to CPAP with a peep of 5 and pressure support of 10 as needed. The pulmonologists think Mac definitely needs the vent (CPAP through the vent - actually BiPAP if you want to get technical), but we have to figure out what works for her. It may not be a clear answer aside from at night and on a PRN (as needed) basis. Personally, I never thought she'd handle the trach collar as well as she has and I'm ashamed to admit that I've probably held her back by being too cautious and conservative. With everything you live and learn and I've certainly learned to follow Mac's lead rather than jumping to conclusions that she "can't" do something. (Check that off my "Mommy's Life Lessons" list.)

The issue with the humidification is in the midst of being solved. Tentatively, the plan is that Mackenzie will be put on Xopenex neb treatments and possibly saline nebs as needed. It was also mentioned to put her on a mucinex neb (although not mucinex itself - something in the family) to help her mobilize her secretions better. Her secretions have become ridiculously thick - partly because of the trach collar and probably because of the infection as well. When we come out to appointments at UNC, we're to leave her on her vent. Once we get to the clinics we can connect her to a heated humidifier to make sure she gets the right moisture. In transport, she'll be wearing an HME in-line with her vent circuit but we may have to increase her vent settings to compensate for the resistance caused by the HME (since she doesn't tolerate it).

Tonight (or whenever Mackenzie decides she's had enough of the trach collar), she will be going on her home vent. The RTs in the UNC PICU are familiar with the equipment, and they'll try her on it for a few hours before removing their vent. Then it's just a matter of adjusting settings to compensate for the vent circuit and that sort of thing.

Right now our priority is to focus on getting more in-depth training while the pulmonologists figure things out. We've learned a lot today in just our brief conversation with the pulmonologists and on Monday I'll be able to sit down and talk with the trach nurse. We did great on Wednesday but I want to soak in as much information as possible so we don't have that situation happen again, and if we do how we could have responded differently (like changing the trach after the initial morning plug). There is a huge difference in being stable in the hospital and maintaining that stability at home where you have a million and one different things chiming in.

Going to UNC

2009-04-24T18:47:00.002-04:00

Mac has been transferred to the UNC PICU. She is stable and well enough to come home, but we're not entirely sure her vent is on the proper settings. Her pulmonologist will be able to hook her up to her home vent and make sure that Mackenzie is getting the support she needs. He will also be helping us figure out the issue of humidity and what to do to make sure plugs don't happen again. I think it has been made blaringly obvious that Andy and I made the wrong decision to come back to CFV. I firmly believe the NICU staff tried their best, but their hands were tied behind their back with respect to policies on bringing in home equipment for pediatric patients.

It's been a crazy week, but I'm confident that our trip to UNC will help us figure out this ordeal with home equipment. It's truly amazing how small changes can impact a medically fragile child. I appreciate all the help and well wishes everyone has sent our way. I really don't know what I'd do without some key people (I'm sure they know who they are.)

Btw, Mackenzie does have 2 infections going on and is being treated by inhaled and oral antibiotics so no IVs! Yay!

We'll update more later.

Update

2009-04-23T22:21:00.002-04:00

The PICU attending is fairly confident that it was a plug. The current assumption is that the humidity from our home heater wasn't enough, thus causing Mackenzie's secretions to become extremely thick. The trach aspirit came back with diplococcus gram negative rods. We should get the final results tomorrow. In the meantime Mackenzie is back down to CPAP +4. Supposedly they're looking to discharge her tomorrow but we're not signing off on it until a few things are taken care of.

1) Change in pediatrician. We're not confident that our current pedi is capable of handling Mac and taking our concerns seriously.

2) Convo with the trach RN at UNC and the pulmonologist. We need ideas on how to make sure Mackenzie's secretions are stable while we're out and about. We'll be away from home for an entire day while going to appointments at UNC and I can't imagine what we'd do if something like this happened while we were on the road and not near a hospital.

3) Get propper circuit. Our RT has ordered a heated wire circuit that will hopefully help keep her humidity in check. This will solve the problem while at home, at least.

I want our baby girl home again, but not before all the loose ends are tied and we know for certain what we're planning to do. I've received some excellent feed back from professionals I trust (including the Apria RT, nursing manager for our nursing agency, one of our [former] nicu nurses, and a neo) and I think it's the right decision.

Ugh. Andy and I have a surge of emotions going through us right now and it's almost difficult to cope. We're struggling to figure out what is absolutely best for Mackenzie and are terrified of making even the slightest mistake. It literally feels like the weight of the world (in our case the weight of a child's life) is on our shoulders and it's up to us to piece the puzzle together. We second guess every decision and I just wish everything was more clear. Hopefully tomorrow we'll get some more input. *sigh*

Miss Mac

We've officially moved!

Blog Moving

Halloween - Then & Now

Lions and tigers and teeth... OH MY!

Trachiversary

Trach Care & Change Video

Wow... it's been a while!

Halloween Costume

I hate sleep studies.

**Warning** Update Overload

Photo Comparison...

Happy October

Ramblings of a mad woman...

Photo Teasers

Quick Update

Has it really been a year?

Growth Percentiles

One week and counting down!

Packing List

Schedule Frustration

2 Weeks!

Pic Funnies

AMT Mini One

Andy's not allowed to leave anymore.

Bronch Update

She's a shoe girl.

Mackenzie and Tallulah

Appointment Update

Booked!

Learning to cook

Playing Sleep Catch Up

Oye what a hectic few weeks. :o)

Girls just wanna have fffuuuunnnn.

Exhausted beyond belief.

Busy busy week!

Pics & Vids taken with my phone

Much better!

Cut in nursing hours?

Wow it's been a while. :o)

Busy Busy Month!

Almost!!!!!!!!!

Central Apnea

Chewy Monster

I heart Sleepy Wraps!

Sleep Study

mmmmmmmmmm Blueberries!

Happy Father's Day Daddy

Silly Pic Saturday

Feet!

9 month check up

9 Months Old Today

Speech Therapy Update

Videos of today's progress!

A few thoughts...

Mid-Morning Update x2

Subglottic Hemangioma

No day nurse... again.

Mid Day Update

Home from the ED

Ugh... yellow secretions.

Eventful Day. Oye so tired!

Great Day :o)

Walk for Cystic Fibrosis

One more week of bottles.

Kooky Family Pics

Mac hanging out at the indoor pool!

Go America! We're number 1!

Ehem!

That's not the whole story!

Shameful Secret + Mac Update

He doesn't like Oreos...

Moving forward with our lives. :o)

Appointment Update

Terrif

Happy Memorial Day :o)

Quick Pic Update

Strange

The powers of Desetin and Oxygen!

Trach Leak

Warning Update Overload