Today was a little bit better! Last night once again Alex was up until after 11:00. I was really at my wits end. After talking to Dr. Koenig and her nurse we made the decision to drop his feeds back to 10cc's an hour with the hope of keeping him more comfortable until surgery. We will continue on 10 cc's an hour until Sunday. On Sunday we will stop all feeds to allow his stomach to empty for surgery. Surgery will be Monday. Then Tuesday morning they will do a contrast study to be sure the tube is in place. Once we know the tube is in place we will start over at 5 cc's an hour and try to increase by 5 cc's a day until we reach our goal. We are unsure if we will be able to increase this quickly. In the past we have had a lot of trouble controlling Alex's ammonia levels while increasing feeds. If it keeps getting higher and higher we will have to stop and give him a break every other day. We are hoping not to have to do this as it will prolong our stay. Dr. Koenig will also be following some other labs pretty closely during this time.
Alex is getting a blood transfusion as I update. This also should help him to feel better. So far it is going well.
Other then that things should stay pretty much status quo until surgery.
Thanks for checking in with us!