We met the surgeon (Dr Wales) who heads up the GIFT (intestinal failure) team. We were instantly put at ease. He had definately done his homework on Noah, which was a refreshing change. And so we are quite happy to have Noah under his care. His immediate concern was the bleeding from Noah's stomach that continues to come and go. Despite all the acid blockers he is on, his stomach ph is still quite acidic. And so he was started on IV pentoprozole this morning. Lots more tests to come over the next few days. Our big issue right now is that the hospital is refusing to let us do Noah's ethanol locks. We are very frustrated and this will certainly not go down without a fight. The last thing we need is for Noah to end up with a line infection over this trip, and this is causing us to question whether we have made a good decision in coming here. Please pray that we can come to some sort of agreement.
It's going to be some very long days here. It's so difficult to sit in hospital with Noah when he is busy and feeling well. Thankfully there is a nice playroom right on the ward that is always open with internet access. I think this will be our saving grace! Today was their summer toy drive, and the playroom was turned into a free toystore. Each child got to go on a mini shopping spree. Although Noah was in ultrasound during that time, he ended up with quite the load of toys in his room.We met a family that I have gotten to know online through a TPN support group. They are also inpatient on the same ward. it's nice to have a support available. But we miss our hospital family terribly and it feels very alien to have strangers care for our son. Although the staff all seems good, it will take me a while to trust them.
For those who have been asking...we are on 6A, in a room with a nice view of the atrium. We also have a room at the Delta Chelsea, just down the block from Sick Kids, and are on the Ronald McDonald House waiting list. The list is not long, so we should have space there soon.