Toronto Day 7

It's hard to believe we have been here a week already. Brad is on his way home this evening and it feels far too quiet.

It was a busy afternoon...a barium study was done. Some barium was put down Noah's NG tube to assess the way his stomach empties. The plan was to follow the barium all the way through Noah's gut. But the barium wasn't emptying out of Noah's stomach at all. So a second tube was put into Noah's stoma and threaded through his jejunum. They then put some barium into his jejunum and followed it through to assess Noah's anatomy. The tube was left in place so that more tests can be done in the next couple of days. This was a miserable experience for Noah with alot of pain and retching. He was absolutely wiped after this one. We did get some visitors though (some old friends from Kitchener) which helped to pass the time away. It was so good to see you Becky, Heidi and Betty. Thank you so much for coming and for bringing goodies!!

Today the team spent a long time deliberating over what to do, but some tentative plans have been made. Noah will go to the OR on Friday to have his stoma completely closed and ear tubes put in. They will also do a scope of his GI tract and take a biopsy of his intestine. The results of the biopsy will dictate the next course of action. If the results show an intestinal disease, then Noah will likely never tolerate feeds and putting him through more surgeries for tubes would be futile. We would be looking at complete TPN dependency. If the results are normal, then we will talk about doing a second surgery, to put in a new G-tube stoma, a second J-tube stoma, and redo Noah's fundoplication. If a second surgery happens, we are unsure whether it would happen here or back home. Although, we are leaning towards having the surgeon here do it. (But, that is jumping way ahead of ourselves right now.)

We have also started weaning Noah's hours off TPN. Back home, because of the risk of clotting, we have not been allowed to decrease the hours. But here the team has a different approach and are huge believers in not having kids hooked up to TPN 24/7, no matter what. So Noah now has 6 hours off the pump during the day, and they are hoping to wean him off to 12 hours, or as far as his blood sugars will allow it. Not sure what our doctors back home will think of this, but oh what freedom that would give us!! And it would significantly cut down on broken lines too.