Toronto Day 22

Today we were finally able to sit down and have a long talk with the surgeon. He had a cancellation on Thursday, so we have a new OR date of Thursday, probably at 8am. He has the whole day cleared for Noah. This is the detailed plan...

1. Create an incision, take down the old stoma and figure out how to fix his stomach and pylorus (this may involve the removal of part of the stomach and pylorus...a Gastroduodenostomy), and reconnect it to his duodenum. This is the big question mark and will dictate how long Noah will be in the OR for. But he needs some working plumbing if he is ever going to have a chance at feeding.

2. Redo Noah's fundoplication (the wrap around his stomach to keep him from refluxing). He may only be able to do a partial wrap since his stomach is so tiny (and may be made even tinier if he has to remove part of it).

3. Close up the old G tube stoma and create a new G-tube stoma that we will use for venting and draining Noah's stomach (Gastrostomy).

4. Create a separate J tube stoma (Jejunostomy) that will be used for feeding directly into Noah's jejunum. This is something we have wanted for a while, but our surgeon back home has been reluctant to do. But with Noah's failures to GJ feed, Dr Wales feels it is necessary.

5. Possibly take muscle biopsies in the bowel as there are some diseases that cannot be detected on the surface biopsies that were done last time. This will be Dr Wales judgement call depending how things look in there.

It's alot to do all at once, but there is no way to move forward from this point until this all gets done. It's tough to take the leap though, when he looks so good off TPN. There will be a PICU bed available for him after the OR in case they decide not to extubate him right away or if he is unstable in any other way. Otherwise he will go to the constant care monitored room again.

Thank you, Kim, Ernie and family for the care package in the mail...couldn't have come at a better time! Also thank you to Aunt Hilda & Uncle Dennis for the Tim's card, and to Mom & Dad for the Subway card. Those should keep me going for a bit!