It was so great to get Patrick to bed on time last night. He slept well and even slept in a bit. But we were up on time to catch one of his favorite volunteers first thing in the morning. I was glad she came because Patrick’s nurse was really busy and without Brian to provide backup, getting up and going was a bit of work.
And we needed to do it quickly. Once a month, some stylists come in and give haircuts to any kids who need them. Patrick’s last haircut was in September. He definitely needed one. They trimmed off an inch and a half at least all the way around. The pile of hair was huge.
He looks and feels a lot better.
Then we came back up to the room to wash off the hair clippings and the volunteer came back again. She did some of Patrick’s homework with him while I made his bed.
The team came for rounds. Patrick’s to do list before discharge is getting shorter and shorter. He looks and feels good. He is back to full feeds and off of TPN. But his rejection medication levels have been pretty unpredictable and they are trying to find the right balance of keeping the fluid out of his lungs while still keeping him hydrated. That and some training for me are about what’s left… assuming nothing else pops up, which certainly can happen.
Next, it was time for the hospital’s annual Christmas caroling. We went with the music therapist and pharmacy students and some other kids and families to sing to the other patients around us. It was fun to see it actually bringing smiles to people’s faces. Patrick didn’t much care for it, but enjoyed the wagon ride. And it meant he got to play with the Child Life specialists a little bit.
When we first arrived, we were the only family to show up. And there were news crews there to cover the event, so that meant they asked us for an interview. Mind you, I was unshowered, no makeup, wearing a bright purple t-shirt and a bright orange Santa hat Patrick had decorated for me. But hey, it’s a little way to give back. So we shared that side of me with Omaha to day.
Amazingly, I was able to get Patrick down for a nap on time. This was good as Wednesday is a school day. Thanks to a sweet hospital mom friend, I even had a yummy lunch to sneak in eating during this time. Patrick’s teacher comes a little after 2:30. He certainly could have used a longer nap. In fact, he cried big fat tears when I woke him. But once his teacher was here, he was happy to play and learn with him. And it gave me a good excuse to clean up the room so that the little table in his room was ready as a place for them to work.
We wrapped up our day with some time doing puzzles in the playroom, making our daily Christmas ornament, and video chatting with some friends back home. He’s still clumsy and weak, but didn’t need pain medicine all day. He is walking mostly on his own and since it’s been over 4 weeks, is even ok with getting up and down by himself.
When it was time to eat, Patrick told me what to make for dinner and asked to have some. That’s the first time he’s chosen to put food in his mouth in a couple of weeks, so I was thrilled.
And now, if we’re going to stick to a regular schedule, it’s time for me to get him to bed. Especially since I need to make a trip back to the Ronald McDonald House first thing in the morning.
Gotta say, though that our first day alone didn’t go off too badly. Of course, child life had activities planned for us or sent volunteers for most of the day. But I’ve learned that even when we are outpatient, we are invited to come over for all of these events. So movie night and craft times and all of the fun stuff is still available to help us pass the time.
Patrick Hoopes 