the low down

breaking the rules!

breaking the rules!


Tuesday and Wednesday brought us to some pretty intense findings on Isaac. We met with the GI and lung doctors on Tuesday to talk before his scope on Wednesday. GI didn’t bring much news, just that we’ve starving him 🙁 With formula feeding it’s hard to tell if he’s getting enough, and apparently his weight is telling us he isn’t. So operation “fatten up a boy” begins now.
His scope brought us a lot of nothing, and also a lot of something. What we know are a few things. Isaac’s connection between his esophagus and lung had closed, but they could still see a hole in the esophagus. The problem with the connection being closed is that they obviously can’t fix what they can’t see. On top of this, the esophagus Isaac has is crappier than we thought. Where the scarring is there is a 2mm opening, they can dilate it to 8 mm – that’s not much. Without serious intervention his esophagus will continue to scar and stop working.
So – what do we do? They are leaning towards removing the lobe of his lung that is the issue. That is the very least. They are meeting to discuss him, and discuss if the should just go ahead and replace his esophagus with colon.
This would be a major, major surgery. Recovery will be rough. Knowing this, this is the one chance we have to give Isaac some sort of functioning esophagus – some chance at normalcy. It would give him a chance to eat little bites of food when we wants to, and be G tube fed and not connected to a feeding pump 19 hours a day.
As scary as the surgery is, we feel we owe it to him. We hate that we have all invested so much in this esophagus and we are just going to let it go, but Isaac and his daily happiness are much more important.
So, this week they will discuss our boy and get back to us. They may go ahead and say it’s time to operate and be done. They may say to wait for the next fistula with the understanding that when it happens we head there the next day…… either way, we are confident in this team and prepared for whatever they may decide.

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