Ok, I LOVE Susan, Tyler's liver nurse specialist. I also love Dr. Rosenthal, the New Yorker, top pediatric liver specialist who tells it how it is. Last week we put Tyler on Enfamil Gentlease, a formula for gassy/fussy babies, AKA Tyler. His pediatric specialist said hopefully it will help. First thing Dr. Rosenthal says is, "what the hell is that?" Almost a duh, why did you do that? I told him, I thought gassy/fussy/crying baby needs formula to help gassy baby. Nope! I soon learned that Tyler, our liver malfunction baby needs something with MCT oil that has broken down fats that can be absorbed without proper liver function. So we will start a new formula, Pregestimil, that will fatten this boy up, hopefully at least add an ounce. Have to love special formula. We are hoping insurance covers some of the cost. Usually it is just covered with feeding tubes, but we'll see. We met with a liver specialist nutritionist who gave us the weekly recipes to add calories. Normal intake is 20 calorie, he is on 22 calorie intake and we hope to bump it up to 30 calorie within two weeks. We get back labs tonight or tomorrow. They said that it is a good sign the poop is changing color, bili counts might take a while to normalize and skin color is the last thing to normalize. He was placed on a higher dose Orso...to increase bile flow, Zantac, which they said could only help if he has acid reflux and this new formula. It is important to tackle the liver problem so he doesn't get colitis(??), an infection related to his liver/bile issues. They don't want to proceed with heart surgery with an increased risk of colon infection, since infections are hard to trace, can lead to the heart and cause serious problems. So the liver doctors have a month to "fix him" as they say. O2 Sats 72...not great; he needs the Glenn. I HATE HATE HATE taking him to get labs. His veins collapse, it is so painful how they search for veins, it is the worst in infants. I pray that nobody has to get blood work on a tiny infant. My heart goes out to these babies.
2 comments:
Wow. I can hardly believe how much Tyler and your whole family is going through. I wish there was more I could do to help! We love you and think of you often!
When we get infants in the ER with impossible veins (poked and prodded the hands, ACs, feet and even the scalp, all with no success) we go for the IO (introsseous). It appears traumatic but really isn't so bad and it always works and always gets plenty of blood easily. Also, do they give him a little sugar water so he doesn't feel all the poking? It totally puts the kids in a euphoric state. I don't know if Tyler can have that, with all his health problems, but it sure is nice. Anyway, if they haven't tried the IO and sugar water, you might ask them to. Good luck, hermana!
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