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.
Subscribe to:
Post Comments (Atom)
10 comments:
niff
I feel your pain,
That is one hard schedule . I cannot imagine what you have to do on a daily basis. It is so hard when we have medically challanged kiddos' and to know when to do what.
I do not have as many challanges as you do but our lo is on the continuous night feeds due to failure to thrive. right now we are on the ng tube, and at times I hate it, and I want the mickey just to make it easier, but then I think , how could I put her through surgery, I know its minor but it scares me. If we do end up with one, we have to travel 5 hours by car. As we have no pediatric gastros here where we live. We are lucky though as she does eat during the day, but it is just not enough. She is just not a big eater, and since eating some cereal her reflux has improved slightly.
Lexi's reflux has been bad at times and I just do not know what to do, We too are on the prevacid. We go back in a few weeks ans see what the dr says.
I am curious though, what is mac take the erythromycin for?
What formula is mac on now? Our lo one at the present time is on similac rs/breast milk.
Also how big is mac now?
Will talk to you later
becky
I THINK I can see where you are coming from. My story won't even begin to compare to what you have to do, but it is what I have : when my son was born he didn't want to latch on the the breast, so we moved to exclusively pumping...so I was pumping breast milk every 2 hours, for 30 min sessions while some one else cared for and feed my newborn. Eventually I got to the point where I was spending so much time pumping what was healthiest for him, that I didn't get to help him develop and bond with him. In our case is was easy enough to switch to formula, but you are stuck spending more time managing your child's health, then enjoying her, in the day to day "normal" sense. I understand how frustrating it all must be for you, but she won't always be like this!!! One day you will be chasing her around the house and keeping her from pulling the table on top of her, like every normal parent.
As ALWAYS I admire you strength and your deep deep love for your child!!
Jenni
niff: it seems totally reasonable for you to feel like this. we only ever had an NG tube, but my entire day was spent feeding, from 6am until midnight. feeds every 3 hours: the feed itself was dripped in by syringe over minimum of one hour, then the next hour was spent trying to get her to sleep so that she didn't chuck up. that left an hour free, then back to feeds! i hated it.
will it be temporary or don't you know yet?
Becky - She's on a low dose of erythro to help with reflux. She's on about 5mg per kilo... low enough that it's not acting as an antibiotic (which is what it technically is). It acts the same as reglan but without the risk of neurological problems. She's switching over from Enfamil AR to Elecare. It's super expensive ($60 a can) and the only place I can get it is directly from the manufacturer... aside from what is supplied by WIC and insurance. Mac is now just over 18lbs.
Clare - It's until things improve, I believe. Her reflux is supposed to get better as she matures, although I feel that its gotten worse.
i don't have much to say coz i have a "normal" kiddo.
But i do feel for you.
sigh~
wish i could do something to help you.
((HUGS)) I can't put myself in your shoes but I imagine I would feel the same way.
Hi, there! You probably won't remember me from the Dec. 2008 boards (my name was wantingagirlhanni), but I've been following you and your little girl. We've had a lot of similarities with our little ones, although mine is not as complicated as your little Mac. My guy was born at 34-35 weeks. I had a placental abruption and he had respiratory distress because he aspirated blood. The next day he received an accidental drug overdose of Magnesium and almost died was reintubated and had a ton of complications as a result. He had pulmonary hypertension as a result of the mag, it has resolved. He was born with hypertension, and still has that (they are not doing anything about it until he is a year old). He was born with an enlarged heart, that has resolved. He had infantile seizures with an abnormal EEG, but that has resolved. He had to stay in the NICU for 21 days due to not being able to eat enough food. He developed an ulcer in the NICU and was put on Reglan. He is still on the Reglan. He had RSV in March and was sent home on O2 due to dropping sats. He still continues to have dropping sats when he gets sick. He was diagnosed failure to thrive in April. He is also 3 months behind develpmentally. He is not sitting, crawling, scooting, or bringing out his thrumbs. He receiveds OT, PT, feeding/oral, and develpmental therapy once a week in our home. He had a positive guaiac and was put on lactose free formula. On Aug. 10th, they did a bronch, EGD, PH probe, sedated echo (looked good),and put tubes in his ears because of the repeat ear infections. We are trying to figure out his dropping sats. He also has terrible GERD and is currently on Prevacid. His tests came back that he has a subglottic stenosis 20% (just told us to have our family dr. aggressively treat any upper respiratory infections), esophagitis (despite being on the acid reducing meds), and they found lipid laden macrophages in his bronch lavage. He weighs 17.5 pounds and was 8.5 pounds as a premie. So, we are trying to decide if we should do the nissen. Our GI doc is not too excited to do it, but our dr. that did the broch thinks it should be done. We live 2 hours away from all of our drs. I hate to think that whatever decision I make could have lifelong implications. So, I just wanted to share our similar stories, and say you are doing a great job!
If it helps...Kaden was on continuous feeds ALL day and look where he is now. The continous feeds were when he had a JG-tube, but he also has a fundo (or nissen). Right now he gets three feedings throughout the day as well as a continous feed at night. His feedings still run slow (they typically take about 2 - 2 1/2 hours) because it seems to still bother him and I think that is because his fundo has loosened up.
I do understand exactly where you are coming from. It is so hard to choose another surgery, but it is hard to see them "tied up" to things (ex: the feeding pump) too. I was wondering, would you be able to mix the free water with the formula (that is what we do with Kaden). Some doctors do not like that though. Just a thought.
Mackenzie is a strong girl...look at how far she has come. She will carry that will into other aspects and work her life around this if need be. I know it!!!
Amy - We can't do the free water during her feeds because of volume limits. We had bumped up the calorie content of her formula and reduced the volume with hopes of helping her reflux. The decrease in volume was causing her to become dehydrated, so that's why we do the ounce of free water inbetween feedings. Although it would have been a great idea!
Niff- Tristan had a fundo at the end of June. Before his fundo he was taking 90mL's every three hours around the clock (for some crazy reason the continuous night feeds may his reflux much worse and his breathing horrible) and his feeds took an hour to complete. We then spent the next hour holding him or having him in his swing or bouncy to keep him from throwing it all back up again. That gave us one hour that we could work on his developmental abilities and oral skills.. and of course he would still end up throwing up. I would also have to find some time in there to pump for 30 minutes (which I think I may finally give that up soon.. )
We were doing Prevacid and waiting until he hit six months old before starting the erythro, but by then he was already scheduled to get his button so we were putting it off until we decided if we were doing the fundo, too.
Anyway, since his fundo we have been able to dramatically increase not only his rate but also his dose. Within a few weeks he was up to 150mL at 300ml/hr (they wanted to get him up to that at the hospital, but that was way too fast.) His feedings are now only 6 times per day (3 day feedings, 3 night feedings) we don't have to fortify anymore and he is no longer Failure to Thrive (he's just over 18lbs, too). I also don't have to live with burp cloths everywhere in the house and one constantly in my hand, which is a nice bonus.. lol.
Unfortunately we did have to put him back on the Prevacid. He doesn't throw up anymore, and his day feedings don't bother him. But he started making his "little old man" face again sometimes and then started waking up 20-30+ times per night(he had been STTN since 8wks.) He's been back on the Prevacid for two weeks and is sleeping through the night again. Another down side that we had is that he refused to eat anything orally for about four weeks after surgery. I am sure it just had to do with healing and getting used to the fundo; our surgeon, ST and OT all said that they see that a lot after a fundo. So I just did little "tastes" with him again once a day but didn't push it. He's almost back to eating the same amount of baby food each day.
It was an extremely hard decision to make, but overall I am really glad that we did. He seems so much happier and much more comfortable. Plus we aren't constantly worrying and stressing about his feedings and how many calories he is losing by throwing up or aspirating everytime he refluxes. They are SOOOO much easier for him now!
I wish you guys all the luck in whichever way you decide to go.
Post a Comment