John is technically not required to be in the PICU anymore, but since there is no open room upstairs for him he is still in there. He is however not on the monitors anymore and has been able to stay catheter free. He took a ride in his chair today, we had all forgotten just how much it took him to learn that and I think it was a big shock to all three of us just how much this surgery would take out of him. He was also a little overdue for pain meds, so it was a slow half hour in his chair but we did see improvement in him being able to watch where he was going throughout the time. Mark and I have figured that we will skip PT and OT here and just work on getting him back to zooming that chair all over the place, along with letting him do lots of coloring and stickers and such. They are giving him little trials with his ng tube not hooked up to suction and we are in hopes that he won't have to keep it much longer. It is very irritating to have the tube running down his throat and something that he is not used to and so last night he barely slept, he was finally out of the morphine long enough to make him really aware of just how irritating that tube was. Being the smart little boy that he is, he knew better than to yank it out because they would just put it back in, but them spent the rest of the night trying to gag it up, needless to say a very restless night.
His water is very limited in trying to get the tube out so all the distractions are a great help. Mail came again today, stickers and coloring pages and cards and he loved it. Thank you for all the contact that we have received, it really makes a difference not only in John's day but in ours to know that we are not doing this alone. And Rachel, tell your boys that when I left upstairs to come type this that John and his dad were playing with those planes again, they are a huge hit and the first thing that he asks for when he wakes up. When he's feeling a little better I'll get a good pic of him with them for your boys to see. They have certainly shared many smiles with John.
We continue to pray, to be hopeful of a sooner rather than later recovery, and enjoy our days together no matter where they are. Mark is headed home tomorrow, but we will look forward to seeing him again on Sunday and John and I will fill those days with as much silliness as we can figure out how to do.
The Food Adventure Continues - I started this blog when we started changing the way we eat. Finding out we needed to be gluten free, actually for me wheat free, was a huge big deal. Late...