Well, we survived another day here without Daddy. (Brian was gone yesterday and today for work.) In fact, today was a little happier. Unlike yesterday were his steroids were making him feel out of control, today Patrick was just loving and fun. We got up early and gave him a bath right away which he didn’t want and cried a fair amount about. (In hindsight, the nurse had told me she’d given his medication later than I thought and I was starting him out kind of in pain.) But once he was settled in his wagon, all was good.
We mostly just hung out in the room again for the morning. A volunteer came and they played while I cleaned up. He asked for and took a nap all on his own. During his nap, I snuck out to call my insurance case manager. With Patrick progressing so well, the team wanted to make sure we start working on a plan for home health care just so that doesn’t end up being what keeps us here. I also had to take a little minute to finish up some school enrollment paperwork. And then, it was back to play.
We painted. We opened the mail and played with the gifts inside. We used some of Patrick’s birthday money to buy a learn-to-spell game that they had in the book fair downstairs and played with that for a while. As an extra treat, one of the Short Gut mom friends that I’ve known since the very beginning of our support group arrived here with her daughter and husband today and we got to spend some time in the playroom together. She coaxed Patrick into showing her how his walker works. (He’s been refusing to use it to walk.).. and he stood up and basically ran across the room. That was enough to sell him on it. I told him it makes him extra strong and extra fast and so he stands up in it and away he goes. I think that’s the beginning of a lot more freedom for him.
And then, to top it all off, an awesome group of volunteers came and put on a “carnival” for the kids today. They had carnival games and really hammed it up to make it fun. I don’t think I’ve seen Patrick laugh that hard or often since he got here. And they sent him back with a prize to boot. I was really very proud of Patrick because he listened and obeyed when we told him that he should wear a mask to the party.
Then, we came back, ate dinner and he asked to go to bed. Tonight, he even chose, after playing “you’re a little sweetie” for a while, (that’s a game where he hugs and kisses and gives ugga-muggas and then calls us sweeties for it), he even chose to let me get up out of bed and let him fall asleep alone.
Good news of the day: Patrick’s feeds were increased again today.. twice. He’s now at 8 times more than he ever tolerated before. Also, we were able to space his pain medicine more than we have before. Tonight he told me he didn’t want it because it makes him feel yucky. I’m listening and we’ll see how he does tomorrow with tylenol mixed in to help us spread out the stronger drugs.
Also, I think I figured out how to work the ancient heaters in the room and this place no longer feels like a sauna. The colder it got outside (and it’s well below freezing at night), the hotter our room was getting.
Patrick Hoopes 