Tuesday, May 5, 2015

More Questions

I had hoped that meeting with the specialists today would give us more answers than questions. There weren't really any answers. Basically we heard a lot of "We'll have to wait and see once he's born" but they did outline kind of the best and worst case scenarios for us.
Minimally, Lumpy is looking at a week-long hospital stay. Which is a good thing to know, now we can plan family visits around that. We know that it is unlikely they will start treatment right away unless it becomes obvious that the malformation is causing problems to other body functions/systems.
The main concerns are heart and lung function as well as excess fluid around vital organs. Basically, once he's born, they're going to do a quick once over, and as long as he's breathing normally and is stable, we'll get to hold him, and he'll get to room in with us just like any other baby. It's if he's not handling things well that he'll be straight off to the NICU and who knows when we'll see him. We were prepared for the possibility of shunts and breathing, feeding, and drainage tubes. Apparently anything can make these abnormalities worse or better.
He likely won't need an MRI until he's about a month old, so that will be nice. For now the plan is to keep monitoring him with NST's and ultrasounds. At the first sign of his heart not tolerating things well, or the malformation starting to affect is airway, they'll look into delivering early and possibly planning an EXIT procedure if need be.
The doctors couldn't really give us specifics, it's just the kind of thing where they can only tell so much by ultrasound and really need to see him and run blood tests, ultrasounds on him once he's born, and other tests to get a better picture of his prognosis.
We were kind of saddened to realize that he will have to deal with this for his entire life. It's not something that's really ever going to entirely go away. It's not something that can be cured, it's just a genetic mutation that is just a part of him. It will likely become less noticeable over time, but it will always be there. It might flare up from time to time, and if so then they treat the symptoms, swelling, pain, mobility, etc. We were hoping he'd just have to deal with it for a little while and not forever.
Lumpy's case is apparently unusual enough that the Pediatric ENT is presenting it at some sort of conference next week. I'm not really sure what that involves, especially because he really didn't seem to be able to give us any specifics and hadn't reviewed the ultrasound at all before talking to us. I did feel good about the Neonatologists we met with though. They were very thorough and answered all of our questions as best as they could. They gave us a brief tour of the NICU and really made us feel like they will be able to take great care of Lumpy after he's born.

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