Waiting....

Cameron has had a good week. He got off the RAM cannula on Sunday and then off of high flow oxygen on Monday. He started doing really good and was the happiest I have seen him for a while. He has been smiling a lot and in such a good mood. Physical therapy has been working more with him and you can see in the pictures the good belly time he got. I have been needing to push this week to get answers for how to help Cameron with feeds and the gagging. The new teams that needed to see Cameron seemed to be taking there time coming and it was getting frustrating. We were afraid he would be all ready to be home, but be waiting in the hospital still for answers. Cameron has been doing good with feeds into his intestines, so it was decided that they would get his g-tube changed to a g-j tube. They will extend his g tube so it goes into the intestines and get rid if the feeding tube in his nose. The radiology team agreed to do the procedure in the operating room on our floor with the cardiac anesthesiologists. Since radiology is doing it, he should need very little sedation. The pulmonary doctor started Cameron on a breathing treatment 3 times a day to help keep his airways open and to thin his secretions. I said we would give it a try, but I wasn't sure that it would work much. Cameron has been having good coughs with the treatments, but most of the time still ends up gagging on the secretions and throwing up after the treatment. I want to talk to the doctor and see about maybe just doing the treatment once a day. Well the g-j tube was scheduled for Friday (yesterday) at 8:00 am, but on Thursday afternoon around 4:00 the GI doctor came in and told us they didn't have the right size tube to do the procedure. Cameron has a size 12 g-tube and the smallest they have here is a 16. They said they could put the 16 in but it would mean totally sedating him with the breathing tube to stretch the hole that is already there, plus pain later on. There was no way we would put him through that. Need less to say, we were very unhappy. The GI team had been asked earlier in the week if they had everything they needed and they said they did. They then ordered the size they needed, but had to cancel for Friday. The procedure is rescheduled for Monday at 1:00ish. We are still in PICU because everyone wanted Cameron kept here till the procedure and M40 was full when they realized the procedure was canceled on Friday. Cameron is considered a border in PICU. We are happy to stay on the PICU cause we are closer to the doctors and because we get our own room. It is frustrating to have Cameron at a point where he is doing good enough to be home, but can't because we are waiting for the procedure. It really is the only thing right now that is holding us here. We just hope that things continue to go good and the procedure goes good so we can go home next week. We just need to trust that God has a plan to delay the procedure until Monday. So we wait.