Abe's CDG results came back negative!!! WOOHOO!!! We are so very glad. It's nice to continue marking things off the list. All of his blood work came back fine. Well the Phenobarbital level the didn't get. Not sure what happened with that because I saw them get it in a purple top. His carnitine level was a little elevated but that's probably because he takes carnitine. Not a significant amount though.
Friday we meet with the surgeon. We have gone back and forth with the Mitochondrial specialist and some of Abe's other doctors as to whether or not we should do the muscle biopsy with his Gtube surgery. The mito doc says that it would be a greater risk to put him to sleep an additional time for the muscle biopsy if he does indeed have a mito disease rather than doing all three surgeries together. We were also told that since he is so small they may have to take muscle from both thighs to be able to get enough. Another reason we are thinking of waiting along with the fact that his other doctors along with us think 3 is a lot for him. We don't know how his body will handle the pain, stress and healing.
We also do not have a clear understanding about whether the fundo is the right thing for him. We have been told that they will do an upper GI first to see if it's appropriate for him to have it.
So prayer request for our appt on Friday. Please pray for clear precise answers from the surgeon. We want a clear direction to go in. Please pray that there will be no question as to what is best for Abe as far as what needs to be done and when. Also before Abe has surgery the dose of his steriod needs to be decreased to help him with healing. We are doing this in VERY small amounts. We started this yesterday. Please pray that we are able to decrease it without an increase in seizures for him.
Thank you so much for your time in joining with us as we pray about this.