
it feels like the past 24 hours has had as much progress as a week! First off, Jack is tube free between tube feedings. He get 8 hours a day where he can be unhooked and ORDER FOOD! His first request? Fresh fruit. He is currently eating oranges, grapes and a piece of toast and he’s thrilled.

His pain is low and he is declining the pain narcotics sticking mostly to just Tylenol and toradol. We are going on laps around the floor every half hour and he’s even getting himself out of bed without assistance. I’m just there to make sure he doesn’t fall on these walks. It’s insane.

you don’t realize how loud the PICU is until you are out of there. I never thought I’d say it but a regular hospital floor is SO quiet by comparison! Jack and I both slept in until 8:30 this morning making up for many lost hours. I’m sure the full nights sleep helps with the progress too.
During rounds this morning, the pancreas team said if we continue with this trajectory we could be discharged by early next week. What a dream….being discharged 2 weeks early would be heavenly. That doesn’t mean we will be home but at least we will have lots of time between appointments to relax at the Ronald McDonald house. Jack and I are scheming on how to get home in under a month (naturally).
Jack started PT today that was more than just walking the halls. He did 10 minutes on the stationary bike, did some arm exercises and practiced stairs. He was a rockstar. Tomorrow we start back up with school work and tonight the siblings are visiting for the remainder of the week. We are both so excited.


While Jack is doing all this, I’m getting a crash course on diabetes management. Tomorrow we learn all about tube feeding care. If he’s able to tolerate the food he eats and we are fully educated, there’s not much left that we need assistance with in hospital! I cannot believe what a world of difference we are in one week post TPIAT. Lots of happy tears today.