Just a quick update to let you know of a change!

We have stopped the erythomycin. That was the new motility medication which we knew could effect the mitochondri​a. Alex's labs were HORRIBLE this morning and one of the things that jumped out at us was his lactic acid. (Kids with mito are prone to lactic acidosis, so this is a lab that lets us know if metabolical​ly he is doing well). His Lactic acid was 2.9 up from .9 yesterday. We all assumed it was a lab error. We repeated it and it was 2.6. The high end of normal is 1.8. Dr. Koenig immediately made the call to stop the erythromyci​n. Other then that things are fine. We are scheduled for early Monday morning.

Ali

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.

Tha​nks for checking in with us!

Ali

Thanks for all the kind words and thoughts. My poor baby has really struggled through this last week and it breaks my heart. Luckily, there is an end in sight. We on scheduled to place a G/J tube on Monday. This is our last shot at a G/J tube. A surgeon will place it and stitch it in place. If it comes out we will have no choice, but to place the separate J tube.

In the meantime, Alex continues to need pain meds for his stomach pain. We did find a regimen last night that allowed him to sleep so that was a blessing.

I will continue to update as we know more.

Ali