Saturday Update on Alex

I have been waiting all day to update because I wanted to be sure we saw everyone and had a plan before I updated.  Alex has had a better day from a pain standpoint. He is still on some hefty pain meds quite frequently, but at least he is more comfortable.

From an infection standpoint, he is on 3 strong antibiotics and has not had fevers so things are status quo there. As far as endocrine we have tried lowering his dose of steroids and he doesn't feel fabulous, but not horrible so we are going to try and stick with it.

Things look okay from surgery. He has one small area with some possible pus so we are watching that closely.

Our biggest issue is from GI. Hi GI motility has completely stopped. Dr. O came in and we have switched some meds to IV and added two new meds to try and get things moving. Right now everything is backing up and dumping out his Gtube. We can not attempt any feeds until we get things moving in the right direction. The meds we started are supposed to help the stomach. Once he stops dumping so much we will start a different medication to help his intestines. Unfortunately, Dr. Osuntokun was not optimistic about us making it home for Christmas.

Please pray for Alex's gut to wake up and for his pain level to decrease so we can make it home!
Ali

Rough Night

Alex had a rough time last night. His pain started to increase overnight and his gastric output is extremely dark and quite a bit. We are running some labs to rule out pancreatitis and we have increased his pain meds to try and get him more comfortable. The goal today is to try and get him out of bed. please say some prayers for some pain relief and overall improvement so we can work towards getting home.

Ali

Surgery Update

Last year when Bruce took the job in San Antonio and we thought about moving, we ultimately decided we could not move because of our support system here. Never have I felt that love and support more then this past week. Thank you to our "village". The love, the prayers, the meals, the help with Maddy, decorating our room, so many texts and emails. It is felt...All of it and it means so much.

When we started putting together the puzzle pieces on Tuesday we weren't even sure that we could get everyone on the same page. Tuesday evening surgery came by and said we were a go, but that it would be Thursday or Friday. Later that evening they came in to let us know that surgery would be Wednesday at 2:00. Yesterday morning they came in at 8:45 to tell us that they would come for us at 10! From there it was a scramble to make sure everything was ready and to meet with Alex's surgeon. Alex was really scared, but did a great job. He was wheeled into the OR around 11 and we got back to our room around 4:30.  Surgery went well, but it was a very long day.

He is having some pain, but is on a pain pump and is doing well. We will most likely be in the hospital until mid next week. I will try and update again soon.