Looking forward

 

We are looking forward to this coming week, he is definitely being transferred up to Cincinnati Childrens Hospital. We are just waiting on the day, and the transportation to get taken care of. I believe we will be taking the Angel Med Flight, since he is stable but he is still on 3 IV antibiotics, replacement fluids and TPN. He is also still under isolation for his rhinovirus...which is simply a cold but we can't risk him getting anyone else sick or him catching anything else while his body is under so much stress already.

Lately, Zach has been experiencing more autonomic dysfunction symptoms, he has been getting flushed in his face and ears really easily..every time he gets excited. He also has not gone to the bathroom in a week...7 days!! But it doesn't seem to be bothering him so we will jut wait and see what happens there. His liver enzymes are showing elevations again, so they are decreasing his lipids in the concentration...lipids are the makeup of fats so less fat but that is better for his liver. He has also been having more leg pains or muscle pains and cramps over the past week or so. And he won't walk, well maybe 2 or 3 steps and that is it. When he does, you can tell he is having difficulty....its like he doesn't bend his knees and he is really wobbly so tomorrow they will also check a CPK to see any muscle inflammation.

We are not going to be here for his immunology or genetic follow up appts so they are going to have them come by and see us before we transfer. I am really anxious to actually talk to the genetic dr. I haven't met him yet, he just ordered a bunch of labs a couple of weeks ago so hopefully they are back and we have some answers there.

Tomorrow is also Daddy's birthday, he gets to spend it at work and us in the hospital so not much fun there but we love him and wish him the best birthday!!!

 

 

Yesterday, daddy and Luke came and picked me up at the hospital to spend the day together. We went to Mt Airy and watched the Mayberry days parade with all the old Andy Griffith memorabilia. That was cool, then we made our way to Pilot Mountain...or as Luke calls it Moleberry Hill. That was really nice, it is so beautiful there and it was nice to get out and get some sunshine and see my babies. I am really going to miss them when we transfer.