Why won't you just eat?

As some of you know, Evan is back in the hospital. For some odd reason the kid just doesn't want to eat! For most kids, not eating as much isn't such a big deal, but for a kid with MSUD it can be an indication of illness, metabolic crisis, or something even more serious.  Or...it could just be a child acting stubborn!

Here's what is going on with us, around Wednesday August 24, Evan became very fussy with eating. He didn't want to finish bottles and went from 5 ounces to fighting after 3 ounces. We were still able to get him to finish his bottles, but he wasn't eating normally at all. By Thursday night, he refused to take more than two ounces at any given time. Very strange for him.  He was still behaving normal at all other times of the day, but when it came to feedings, he was NOT having it! Fast forward to Friday morning...Evan awoke as usual for his 4 am feeding. He took 3 ounces from his bottle without problem. I stopped, burped him, changed his diaper and went to give him the bottle again. At that point, he vomitted what looked like the entire 3 ounces he had just eaten. For those of you who do not know, vomitting is the nemesis of MSUD. I couldn't take it anymore so I woke up JR and told him that I felt we needed to go to the hospital to have labs drawn and to have the doctors observe him.

We got to the hospital around 5 am, Friday morning.  In the ER they drew labs and Evan's geneticists came in to observe him. Based on his behavior they were pretty sure it wasn't his MSUD acting up, but there really isn't a way to tell until his levels come back...which took until SUNDAY! So frustrating! Evan did not want to eat more than an ounce every few hours if that while in the ER, so they started an IV of D10 which is basically fluids with a high level of sugar to give him calories.  They admitted him and several hours later we were finally up on the general peds unit...and here we still sit!

Evan's levels have all come back normal, so now it's just getting him to eat.  A feeding tube was put in Saturday night and was run on continuous feeds until the next day. On Sunday we went to bottle then bolus feeds to mimic the normal eating pattern during the day and a continuos feed at night. Evan is starting to eat more by bottle than by tube which is a step in the right direction. Hopefully he continues to move in the right direction.

We still have a lot of questions...many of which no one has an answer for. Of course the biggest question is why won't he eat? We may never know and that is soooo frustrating!




Here are a few pictures of Evan during his current stay at the hospital.  

Evan LOVED playing with the activity gym we were able to borrow from the Child Life program.  He would bat at the toys and kick and laugh. (Basically the happiest "sick" kid ever! LOL)



Our friend's Jen and Travis came to bring us lunch and visit with Evan.  Travis had not met Evan as he just returned from a 6 month deployment to Afghanistan. Evan took to him right away and LOVED when Travis put his hat on his head! We are truly blessed to have great friends here! :)



Feeding tube in and still laughing and smiling! :) We are lucky to have such a happy boy!