This little fella sure knows how to keep me on my toes. I have come to the conclusion that nothing is going to be easy or text book with him!
We had a long sleepless weekend. Between digging out of the clutter in our house and dealing with Brinkley's feeding issues, I am beat! This formula we were sent home on is not sitting well with Brinkley (or any of us for that matter). He is not tolerating it all and nothing seems to be helping.
The main thing that kept us in the hospital so long was fat drainage. During surgery parts of his lymphatic system were nicked and the fat from his formula was draining into his chest area. He was put on a special formula called Enfaport that is made with vegetable and plant based fats unlike a typical formula. This allows the body to absorb the fat differently. Apparently it is nasty. He doesn't like it at all and has a hard time taking it by mouth. (This feels like a big set back to me.) Not only is it nasty, it is expensive. He has to stay on it for 6 weeks and the 6 week supply cost $324. Needless to say the majority of feedings are going through his feeding tube for now.
Brinkley's caloric intake is too low, so the dietitian at MUSC gave me a plan for how to increase his intake. Unfortunately, this is not working so well. If anything we are backing up. Brinkley throws up with just about every feed. I have tried spreading them out further, giving him the feeds over longer periods, changing the volume of the feeds, and nothing helps. He vomits all night and just cries and cries. It breaks my heart. He can't be getting anywhere close to the amount of calories that he needs.
This morning the vomiting got so bad that it burst the balloon that holds his button in his stomach. (The button is where the feeding tube connects.) The button fell out and I had to rush him to the surgeon's office first thing this morning to replace it. The poor little guy can't catch a break!
We are about to head out for an appointment with the geneticist. Hopefully they won't need to handle him very much. I'm not sure how much more the little guy will deal with today.
If anyone has ever had to deal with Enfaport and has suggestions, I am all ears!