For those of you that like facts and figures I wish that's what this email could be. However most of you have known me long enough to know that's not me. It's not in me to be that way. So ya'll are getting the whole assortment of mush.
When Dr. Bhathia walked in I realized right away that we knew her and I had that peace of knowing we were in good hands. Even though we had been told that by two doctors that we admire greatly.
She took the time to go over everything. The g-tube was pretty cut and dry because we know it's the safest thing for him at this time. The ng-tube is not a long time solution especially since he pulls it out at least once a day and I do not enjoy having to put it back in each time.
She didn't hesitate on saying yes to the muscle biopsy. I expressed my concern about him not having enough muscle in one thigh and that they had told us it would probably have to be taking out of both thighs. She said well I will check but I think we can get it out of one.
Next was the discussion of the Nissen/fundo. Since finding out about that we have had several discussions with other mitochondrial families who say if they had it to do again they would not do it. It has created a lot of unneccesary problems for their child with mito. Abe's GI doctor along with Dr. Bhathia did not see significant reason to do this procedure other than the fact that the main times he was having reflux during the ph probe was when he was having a seizure or sleeping. There is concern that because of his low muscle tone he would not be able to clear his airway sufficiently. However since we put him back on the zantac he is doing much better. So we are questioning whether it was the reflux that caused some of the seizures during the ph probe. We know there is a risk of the gtube causing his reflux to get worse but we will face that when the time comes. If that happens we may have to go back and do the fundo.
She was pleased when she did the exam so that was good. When she looked at his thigh she seemed to think she could get it out of just one.
So everything wasn't quite as clear as I would have liked but a lot of that is because I am having a hard time accepting the fact that he even has to have any of this done. I will get past that and face the issues and get everything prepared for surgery day. She wanted to do it December 23rd but I couldn't imagine him spending his first Christmas in the hospital. I couldn't be away from my girls and Mike on Christmas day if I had the choice. His surgery will be January 6th.
We get home and Brooke and Marlee Anne have decided we need to finish decorating atleast one tree. I was just going to let them stay the way they were. In attempt to get me in the mood the Christmas music was on. Their joyous mood didn't transfer to me but they kept trying.
On top of all that we received a beautiful gift from our friends in Nebraska. It had a beautiful travel mug with my favorite scripture on it. Just the reminder I needed today that God is still in control.
Thank you so much for your prayers for today!