We've officially moved!

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

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

Blog Moving

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

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!

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

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

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!

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

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.

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

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...

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

Ramblings of a mad woman...

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

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

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?

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

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!

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

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

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.