Going Home

I really can't believe I just wrote that. Yesterday was a week in this little room that has become our home away from home. We are ready to get out of here but there is something so reassuring about having so many people around all the time. The past 3 days have been rocky. Leeland had several cyanotic episodes that we just can't seem to get to the root of. They could be a result of reflux/aggravated airway/dis functional vocal cords/vaso vagal response. The Epileptologist does not believe it is seizures. We are in one of the video monitored rooms so she was able to go back and watch all his episodes. He has also been throwing up and having the big D for a few days, just can't keep anything down. They had to start another IV to prevent dehydration and test for C Diff. I won't go into the details but to say that Leeland is hard to stick/get an IV in is an understatement. Poor think looks like a pin cushion. He officially has a reputation with the nurses and it's not a good one.   In terms of his actual surgery, he is doing great. His head is still super swollen but that is to be expected. When we take him home we are going to be able to wash his hair and do with him as much as he allows us to do. We are definitely going to avoid the jumper for a while. We don't want anything jiggling around that's not supposed to jiggle around. We are just going to have to keep a close eye on him and monitor for any unusual activity. We will follow up with surgeon next week.   Thank you all so much for the continued support and prayers!