Sarah,
I’m so SO sorry that you guys are going through this. I partly know how you feel, because we had many discussions about feeding tubes and fundos for Hailey. But we were also in a different boat in that Hailey gained weight, thank goodness, so they looked at things differently. I don’t have any answers as to why the reflux gets so much worse with even the simplest cold or virus, but it happens for Hailey too- when she gets the slightest runny nose she’s refluxing like crazy and choking and gagging and vomitting all over the place. The best explanation, which wasn’t even that good, that we ever got was that her whole system is so sensitive GI wise that the slightest thing sets it off. I also think the mucous doesn’t help and just aggravates things. Also, about the sweating, Hailey is often covered in sweat, especially when she sleeps, and our doctor told us the same thing- that it’s the reflux stressing her system, and triggering her anxiety response. She can go from dry to drenched in a matter of minutes in an air conditioned house.
Like I said earlier, I wish that I was closer to give you a big HUG. I know how hard it is to make these big decisions for your child, and we all know that you’re doing the best that you can. I think I posted somewhere in another thread some questions that you could ask about the fundo, though it sounds like you’ve already talked to the docs about it. I only bring it up because it’s questions that I asked our doctors b/c I’ve read a fair bit that seems to suggest that fundos tend to work out the best when they have all the answers before hand.
About the PT, I’m a big believer in rehab evaluations and early intervention (though I’m biased b/c I’m an OT). Hailey also had OT, PT, SLP, feeding therapies and they were very good for her. I never think it hurts to get an eval, though I know you’re really busy right now, and sometimes it’s just a matter of some fine tuning.
I really hope that things go smoothly for Quinn and that this is the answer for her. Please know that we are all here to support you in any way that we can and we all pray for the best for Quinn. HUGS! and good luck. Please keep us posted.
.
I’ll be praying for you both.
