Didn't I just get done posting good news about everyone? I should have known someone would start acting up!
I had mentioned that Noah was being hooked up to his tube feeds after dinner and wearing his backpack. Well, Wednesday night he was crawling around on the floor playing after dinner. He heard the garage door go up as Brian was getting home from work and started crawling over to the door. Somehow, he got the part of the tubing hooked under the door and pulled his g-j tube out! Ouch! I am sure it didn't feel good in the least but he only cried for a minute. Luckily we had an emergency Foley cath to put in so the hole would at least stay open and we could get fluids in. Being that it was already 8:30pm, there wasn't much we could do for the night. We called U of M and they were able to book him OR time for Thursday. We left about 5am and headed to Ann Arbor. We had to wait to be squeezed in and they finally took him back around 11am. The procedure went well and he was done in about 45 min. They had to dilate the opening a bit more because it had already closed around the Foley cath, so his having some discomfort from that. He did have some trouble coming out of the anesthesia and was in recovery for several hours. He doesn't handle narcotics well and they had given him some fentynl for the pain. I think this had alot to with the problems afterwards. He would wake up, thrash around quite a bit and his sats would drop and he would turn blue. Once he calmed down and with just a bit of blow by o2 he would be fine again. This lasted for awhile but he was much better after a few hours. By the time we left the only thing he was upset about was the bandaid they had put on his hand when they took out his IV. While Noah was busy having his new tube placed, Elliot took care of Noah's usual social obligations. He chatted with all the clinic nurses and even let Dr Mychaliska hold him for awhile and of course got in some cuddle time with Jeannie. They all agreed he has to behave better than his brother!
So, now Noah is sporting a shiny new g-j button and we are back to the drawing board with tube feed weaning. I don't think we are going to attempt the back pack again anytime soon. He is just too mobile for this approach and we don't want any more of these little accidents! Realistically, after talking with everyone up in Ann Arbor, it will be at least a year before they think he is going to be ready. The weaning process will take awhile and then he still has to prove he can go without tube feeds and maintain his weight for a long time before they would consider taking it out. I am hoping once he is less dependant on the feeds we can switch back to the g-tube. At least then we can switch out the button ourselves without putting him under anesthesia like the g-j.
Have a great weekend and as always, thanks for checking on us!