Well our follow up was yesterday with complex care. I have to say that I didn’t find it very helpful but I kind of expected that. Bascially I told him how frustrated I have been with how A is doing. I took my notes and showed him how much he has been vomiting. He seemed a bit concerned about that so we are doing continuous feeds throughout the night and three small feeds during the day to see if that helps. If not then we will do an upper GI to see if he is refluxing past his fundo (which I think it not functioning) and then switch out to a gj tube again.
Last night was our first night of continuous and we had a nurse here which was nice. He did okay until about 6am and she said he was gagging and definitely refluxing. That continuous ended at 8am and then at 11am he got his first of three small feeds for the day. He gagged through the whole thing turning off colour constantly. After the feed was done he threw up three times.
Sunday night when I put him to bed he went down to 14 and I was ready to freak right out. I can’t even tell you how stressful this has been since he has come home. I feel like I have aged at least ten years. Anyhow, I was so fed up with his shitty sats at night sleeping (88) that I put oxygen on him. Guess what? He satted 98 ALL night and slept great. So Monday night I did the same and it worked. Right now he is napping on the couch satting 82. So I have the oxygen in front of his face and he is 96.
I told the doctor about this as well and he seemed okay with it. Of course I don’t think it is my job to find out what works best for A. Especially when you are talking feeds and needing oxygen. He is only getting .5L so the doctor is okay with it. If he sats 100 I just turn him down as I don’t want him sitting at 100 because of his hypoxic drive.
After that appointment we went and he had some bloodwork done after his feed for genetics along with a urine sample. He did very well and I can never get over how awesome these people are there that take blood!!!!
I also just found out that the approval for his DNA to go to the States just went through so we have at least a three month wait for that.
Tonight is exciting for all of us. In January I was contacted by a gentleman who wanted to grant A a wish. Because of being in hospital we were not able to do anything. He is finally coming tonight to meet A to see what he wants to wish for! He also told me that he has a large sum of money for J and I to catch up on things since spending so much time in hospital. How awesome is this!? I still have NO idea what to wish for….maybe he will have some great ideas!