I've been thinking about how many trips we've made to CHOP since we actually got to bring Noah home. So I broke out the calendars and my "Noah's Medical Journals" (I've been writing down his feeds and throw ups for more than a year now).
We have 4 pending appts in June and am seriously considering canceling one of them.
I am so SICK AND TIRED of the hospital (I do believe I've said that so many times before but I cannot emphasize it enough). It's actually not the hospital itself; it's the preparation, packing, and finally, the drive.
I have such anxiety about the trip. Noah DOES NOT travel well. By that I mean it's all about gagging and throwing up and crying for the 5 hour trip. It's a little hard to concentrate on the road when your kid is choking on vomit. I won't even go into all the baggage that accompanies my little man every time we leave town. Thank God my parents have loaned us their Surburban to drive so I can actually take all the supplies we need.
When your kid has a diet that treats his seizures, food becomes REALLY REALLY important.
Throwing up isn't an option any longer.
Noah had surgery to correct his reflux and thus his throwing up (The fundo, remember?). It didn't really work. He is throwing up and I mean throwing up, like CRAZY! I'm going insane.
I am trying to juggle feeds (every 2.75 hours), free water feeds (1.75 hours post feed, 45 minutes prefeed), throwing up, refeeds, 6 therapists coming to the house, Poor Miss Hanna who is relentless with her ball, the house, and Joey who is incessantly crying for kitty candy.
Now I am having anxiety attacks about an upcoming appt at CHOP that I seriously think is ridiculous. It's the fundo program appt. I just can't imagine what they can tell me. Surgery didn't work? Let's run more tests? More surgery? Re Do? G-tube? See, the thing is I DON'T CARE what they say. We won't have another surgery (one thing I hate more than dr appts is surgery). We won't opt for a tube (it doesn't stop throwing up anyway). The last time they did an upper GI study it was a TOTAL NIGHTMARE.
So I guess I have to resolve myself to this reality.
Noah will always throw up. Walks are a thing of the past. Thank goodness someone decided to drink fermented grapes and then make more for the rest of us.
It's rough. I'm tired. I feel terrible for a boy who will never enjoy eating. But it is what it is. At least he's not having seizures to top things off (knock on wood). He does cry a lot. He hates all therapy. He doesn't like to be touched. But he IS cute as can be and he is mine all mine!
So CHOP, I'm breaking up with you. We have been to visit you every month since Noah came home (Nov 2008) except for 4 (one of those months we went to Detroit to see the Infantile Spasms Guru). 18 months out of 21 we have been to the hospital for one reason or another.
I am DONE, DONE, DONE. Think I will cancel that appt. My baby needs a break (so do I!).