Journal entry by Tiff Grayson —
After three days and nights in the hospital, Max (and his mom) were ready to come home. We had to push a little but Max advocated for himself really well, and kept the deals that were made, such as keeping his oxygen saturation and respiratory rate up through the night, eating a full meal, and going for 8 walks.
We got home yesterday just after lunch, and it has been kinda nonstop, so sorry for not updating. And thank you to everyone who checked in on us.
After my last update, we had a rough afternoon. The nurses had gotten behind on Max's pain and it broke through. Took several hours to get back on top, and let's just say not something anyone wants to see their child go through. Max was a total champ, though, and the rest of the night was spent making sure his breathing stayed in the positive column. This made for a not-so-restful sleep, but...goals. George was back, and was completely on our team making sure we passed.
Reentry took some time to figure out. Had to configure and reconfigure his bed to dial it in just right, but I think we've got it now. We made his favorite dinner, Skyline Chili (it's an Ohio thing), and he even managed to sit at the table for it.
Today we had a problem with Max's nerve blocking catheter disconnecting, and because a seal was broken, we had to remove one of them due a risk of infection. These two catheters have been keeping him numb and covering about 75% of his pain. They would have had to come out by this time tomorrow, so it's just a little sooner one one side than expected, but we are hoping for an OK transition there. It may have been the Xbox Controller, but I'm not gonna say. If he's playing Xbox and making TikToks, I know he's not feeling too bad.