Still moving forward today. G-tube feeds went well overnight and so they doubled the rate to 10 cc/hour this morning. So far, so good.
The physical therapist came by and she was very pleased by how well Patrick is doing. In fact, most of our talk was a reminder to me of how important it is to watch and slow Patrick down for a little while so he doesn’t accidentally open his incision.
He’s slowed himself down a fair amount anyway, though. He kind of overdid yesterday and his sides are hurting today. So we did a lot more resting and gave more pain medicine. He did still walk to the playroom and sit at his desk. He also napped a lot and rested in his wagon.
We asked the woman from child life for help finding a volunteer to get me back to our room for a shower, change of clothes, and a filling meal. Well, the first volunteer showed up at 1. I was actually a bit upset because it was earlier than I expected.. but I went and it was good to get clean and to rest. And it was good that Brian got to spend a little bit of time working and taking care of other things today, too.
Meanwhile, the sweet grandma-like lady who shuffled me out for a break watched Patrick while he napped, put on movies for him, and then took him to music therapy.
Patrick came back from music therapy grinning from ear to ear, laughing and talking about the drums and “ma-ca-cas.” He had a great time.
However, then new volunteers just kept coming. We sent the ones who came at 3 away. But at 5, we let them stay and went to the store for a few needed things and then out to dinner. And now i know that I need to be careful what I ask for in a hospital where spending time with the cute 6 year old is the appealing task on the job list. Actually, I think I’m going to come to really rely on those volunteers to help me take care of myself. The combination of tired, head-achy and hungry had me quite unhappy this afternoon. It is so nice that there are people willing to come in and help me with Patrick so I can take care of me, too.
One clarification that I was asked. I have been saying they “clamped Patrick’s stomach”… what I really meant was that they closed the clamp on the drain from Patrick’s stomach. No actual clamps on bellies.
Patrick Hoopes 