Toronto Day 11

Success!

Well, sort of...

Success in that Noah came through this morning with flying colours! No matter how many times we've done this, there's always that moment when my stomach drops and my heart lurches as I hand over my son to the OR nurse. But I felt confident, with Noah in such good health going in, that he would do well. The "before" picture in the OR waiting room...

He did prove difficult to intubate, so he is still having a bit of bleeding from his mouth as they had to manipulate around in there. But he was a dream to extubate. The "after" picture in recovery, doped up with morphine, but still determined not to miss a thing...

He went to the constant care monitored room after recovery, but after a little nap, there was no holding him back. I convinced the nurse to disconnect the monitor a bit so Noah could play. We figured if he could scoot around the room, he must be okay! When Dr Wales came to do his rounds, he had a good chuckle at his patient in the monitored bed. So by evening he had kicked us out and Noah was settled back in his old room. Since he spends the night hooked up to his CPAP and sat monitor, no one was too concerned.
His ear tubes went in without any issues. They found a raging ear infection in one ear so he's on antibiotics for the next few days. Guess that explains why Noah has been pulling alot on his hair by that ear. The scopes showed some interesting findings. They discovered that Noah's stomach is completely diverted or blocked in half. He actually has 2 holes coming out of his stoma. I will try to explain this as best I can...

When they threaded the scope down Noah's esophagus, it went into a very small stomach and then right out of his stoma (the first hole), instead of continuing on into his duodenum. The surgeon said suddenly they saw something blue, weren't sure where they were, and then realized the camera was sticking out the hole, looking at his gown. His fundoplication is also completely unwrapped (we had suspected it was at least partially failed). Then he has a second hole in his stoma that they were able to thread the camera through, which goes into the other side of his stomach and directly into his duodenum. His pyloric is nonexistent (for some reason it has stretched wide open). The stomach tissue looked good though, so the pantoprazole has helped to heal the ulcers.

They then did a scope from Noah's lower half. Despite the strange position of his large intestines, they were able to get the scope through. There were some ulcers in his colon area, but otherwise no obvious findings. Biopsies were taken throughout the intestines and stomach, No skin biopsy was done, as metabolics didn't have all the information from Winnipeg, and weren't ready to commit to that. Oh, and in the midst of it all, Noah seems to have developed an allergy to the regular clear tape they use here. He had a piece on his back and the area is now covered in welts.

So what does all this mean for Noah?? Right now everything hinges on the biopsy results, which will take a week to come back. And I'm praying that they will help shed some light on everything and give us some answers. If the results come back showing a definate malabsorbtion disease, in which case Noah will always be TPN dependent, then it is not so important to fix up the mess that is his stomach. The tentative plan would be to close up the stoma holes, and create a new hole strictly for venting. But if the biopsies show that he has potential to absorb, or if they come back with no answer at all, then we will need to forge ahead and try to fix the plumbing in there. The plan in that case would be to redo Noah's fundoplication, fix this stomach diversion, try to reconstruct his pyloris (this may not be possible in which case the surgeon would remove part of Noah's stomach and duodenum and then reconnect them), and then create a new G tube stoma, and a seperate J tube stoma. Yep, it's alot...it will be a major event.

After discussing this all with Dr Wales today, he said to me "Now this is why I refused to do telemedicine with Noah". Touche...yep, can't argue with that...would have been a tough one to diagnose over the phone. Despite our balking at coming here, if we had not, we would probably never have discovered this about Noah's anatomy. So I am thankful for where we are today.

After all this, Dr Wales has left the decision up to us. We could go home once the results are in with recommendations for our surgeon back home. Our we can stay and have him do the surgery. A tough decision, as I so desperately want to be at home, or at least closer to home in our own hospital. And yet...not such a tough decision. We have built a trust here, and I have no doubt that Noah is in the hands of an expert. Wanting the very best for Noah, we feel that it is here, with a leading surgeon in this field and a whole team of experts. And so the plan is to stay put and continue to see this through.