Well so much has happened in our three days here that I am just amazed. We came in Thursday night and A was SUPER happy to be here. What a kid! They did the bipap the first night but it did not go as well as they would have hoped so they did give him some sedation. He did about three hours on it the first night. It was great for me, because the respiratory therapist on with him for the past three nights knows him very well.
Friday I came in and they had already done an echo and we headed down to do an upper GI to check his fundo. All was great there. No results as of yet from the echo.
He also started with a fever on Friday and still has it today. So yesterday they did some blood cultures and a urine culture, results will be in tomorrow.
Last night on the bipap they gave him more sedation than the first two nights and he did about 5.5 hours on the bipap with ZERO desats!!! I am thrilled!
He was supposed to go in today for a CT scan of his chest with contrast however it is pretty crazy in the PICU today so they are holding off on that until tomorrow. I had a great meeting with one of the doctors yesterday and he feels that this CT will possibly help A’s respirologist maybe get some more insight. They were a bit iffy about doing it because they have to give him an IV but I told them that I was willing to let them do that if they felt this CT would help them. This doctor has done NOTHING but prove himself to me and I have total faith in belief that he just may be THE one to finally figure A out.
Please keep up the good thoughts and prayers. A is definitely in the right place to be sick but we didn’t come in for that! The doctor two nights ago said to me “this was supposed to be a simple admission for bipap but yet it seems so complex.” That is my boy!