What's Going On?

Ben has been having trouble tolerating his feeds when he wakes for the day. It has been a struggle on and off (more on than off) for the past three weeks. He starts gagging, has tons of secretions, starts sweating and vomits a few times. After the episode, he is lethargic for a few hours and then springs right back to his old self. I have tried everything I can think of to help and am often asking myself "What is going on?". We can't have him vomiting like this every morning for many reasons. First, he can't afford to lose the weight. Second, his nasal passages are open for the first time ever after too many surgeries. When Ben vomits it comes out his nose and ears too and I'm so worried the vomit is going to cause scaring in his nasal passages and close them off again. Thirdly, Ben's cochlear implant was implanted differently than a usual implant and is exposed in his ear. Because of this, we have to be very careful about any ear infections in fear it will infect the implant that leads right to his brain. And last but not least, it is just heartbreaking to watch him struggle every morning and feel so awful. Nobody should have to go through that.

It just so happens that two other little CHARGE kiddos we know are admitted in the hospital for the same feeding issues right now - just more severe than Ben's episodes because theirs continue all day and ours subside after the morning (although yesterday he had trouble in the afternoon too, but I'm hoping that was a one time thing). And they haven't found anything to help or gotten any answers either.

I've been trying to manage it at home and with a few phone suggestions from Ben's doctors, but am now at the point that it isn't improving (actually yesterday after following some suggestions from the GI Nurse Practitioner Ben started doing worse). I have no choice but to start scheduling Ben for the visits with his docs and have him endure the tests that I'm sure they are going to want to run. I'm dreading it because Ben is terrified of the hospital (can't say I blame him). Last time this happened, Ben ended up spending two weeks admitted and a dozen tests run and nothing provided any answers. There is nothing worse than putting your child through all that to not find out anything.

If anyone has any input or suggestions, please let me know. I'm starting to wonder if over a certain period of time, a child can develop an allergy/sensitivity to their food. Has anyone experienced that or checked into that?

It must be in the genes!

Shortly after my last post, I recieved an email from Mike's mom with two pictures. One was of Mike in a metal tub just like Ben and the other was of his mom in the same tub. I couldn't belive it! I've never seen these pictures before so what are the odds that my mom would have a tub just like theirs and we put Ben in it!

Maureen (Mike's Mom) - Youngstown, Ohio

Mike - Youngstown, Ohio

Ben - Tipp City, Ohio