A Trombone Player and a Sushi Roll

Grrr. No swimming today. It was really kind of a screwy situation. We were supposed to be at the pool at 10:30 in the morning, but we were asked to wait because someone from a really good orthodics company was here to look at Christian. It literally took 5 minutes. At 10:31 in the morning the physical therapist walked in to tell me they’d already packed up for the day. (What?!) But that we could do it tomorrow. (Fine.) Oh, but wait…when the PT came back later on today to do her session with Christian in the room she told me we wouldn’t be able to do it tomorrow either. In fact, not until next week. Grrr. This is me disappointed :( . They said we needed an RT because of his trach and blah blah blah and they weren’t going to send an RT down for just one child. Boo! So I’m pushing for some time earlier in the week. Even if we don’t exactly get PT in the pool, I just want to go take him in there. It’s actually really transformed another near drown patient here. I can see it in his face when he comes back from the pool.

We had the care plan meeting and…meh. It was really mediocre and generic. It felt like it was just part of the protocol. Like…check…we met with her. That’s off our list. I met with all the department heads – respiratory, physical therapy, nursing, and social services. The only one I’ve actually met before is the social worker. The rest I’ve never met and I’m pretty sure they’ve never met Christian. Great, even more helpful. They really just read off their notes that others had reported to them. It went a little something like this…

“So how is Christian’s sympathetic storming?” – Nurse I’ve never met

“He hasn’t stormed since he was in the hospital.” – Mama Bear

“And his seizures? – Nurse I’ve never met

“He doesn’t have seizures. That was ruled out in his first week of PICU.” – Mama Bear

“Oh, well it is common for those with brain injuries to have seizures or possibly have seizures in the future.” – Nurse I’ve never met that’s now irritating me because she obviously does not know and has not visited my son.

Okay, thanks for that piece of information. I felt like I ran the meeting. I know this probably isn’t how it always goes with parents, especially for parents who aren’t as involved. But I’m always here so I was updating them on his progress because their reports were not current at all.

Everyone else had no idea what they were talking about because they were reading from notes. Splendid. But what we did get out of the way is that all we need is the doctor’s okay for discharge and we are busting out of here the first week of September. Woohoo! And even better is that Hacienda will be making all of the arrangements for the medical equipment to be delivered to our house and ready for us when we get there.

As for Christian, he got a lot of therapy today and he did so well! The PT actually caught him trying to roll from side to back, intentionally…possibly, maybe. I say this because I know he can roll from side to back because when I place him on his side and he’s not tired, he tries to get onto his back. But I also thought that may be also due to his arch. But the PT said something about him leading with his shoulder which may show a more intentional roll. Yay, for Christian! I love my little sushi roll! We also always do head strengthening exercises before bed to wear him out a little. He was all over the place! His arms were moving, his head was moving. It took a few minutes for me to get him to settle down. And then when we were done, I held him in the rocking chair and he dozed off. I love how he does that when I hold him.

Gabe started his first day of trombone practice at school. He likes it so far! He’s played the guitar for over a year and now we’re trying something new. His lips and mouth were sore but he’s a trooper. I could tell he was excited because he was more talkative than usual, which is rare for an 11 year old boy. At least for my 11 year old boy. I can’t wait for his first recital. I’ll be a proud, embarrassing Mom with a camera and everything. And he’ll avoid me like the plague.

Oh yeah, and another big deal…Christian made it through 24 hours straight with the PMV. I’m happy to report that’s 24 hours and counting. We’re actually going for 48 hours now. And with no trouble. He’s really comfortable with it and last night, in my opinion, he did better with it on (with aerosol humidity trach mask) than without it. The RT asked if we had discussed capping. That’s the next step, which is closing off the trach completely and only opening it for suction purposes. After successful capping, we consider removal of the trach. All in due time. I’m not quite pushing it because I want to do it when Christian’s ready. No need to stress him out because that can effect recovery in other areas.

Remember, slow and steady wins the race.