Exhausted...

It is amazing to me that I can get about 7 hours of sleep and still be absolutely exhausted! Brian let me go to the sleep space last night around midnight while he pulled night shift with Sam. I think Sam slept a total of 30 minutes last night. Now, Brian is downstairs sleeping, and Sam is finally taking a little nap this morning. He is doing ok....but still far from being in a good place. They checked his liver function and some other labs this morning and found his ammonia levels are really high, but his liver function is normal. When your ammonia levels get that elevated it can cause your mental processes to not work well. This could be a very good explaination of what happened yesterday. We are not sure why his levels are high, but this is something they are seeing in kids that have this bi-ventricular repair surgery, especially in kids whose anatomy was reversed from their original single ventricle path. They have started some medicine to help those levels to come down, but it could possibly take days. We are also starting back his methadone and ativan at low doses to prevent withdrawl and I am hoping he can get some rest with these. His little body is beyond exhausted, and he needs some good rest to help him recover. He had a little period last night when we switched him from c-pap to high flow nasal canula when he was drowsy, but alert and knew who we were. He was saying "more" wanting to drink, when I would tell him i loved him he would say "love you" back, he was saying "daddy" and so on, then after about ten minutes he was out of it again. Because he is so disoriented he isnt taking the best breathes and having trouble moving air through the lower lobes of his lungs. We will do some chest pt to try to open things up and get air moving a little better. He was a little postivie this morning and his xray looks a little wet, so we will add in more diuretics if needed to make sure he is negative in the morning. Thanks for the prayers and please continue :)