Fixations

I had not prepared myself for this part of Jake's healing process. I've been working so hard to take things day by day, I didn't look forward enough to see how different this part would be. He's not sleeping all that well, he's fixated on things, can't be reasoned with and he has periods of high restlessness.

It became obvious pretty quickly yesterday afternoon that Jake is going to need CONSTANT supervision when he is awake. Someone needs to be sitting by his bed, redirecting his hands, making sure he doesn't wiggle himself off the bed and calming him. The more he gets the sedation drugs fully out of his system the more alert he is. While his right arm was restrained, I stepped away from his bed for less than two minutes to get my water and he wiggled himself down enough to pull his feeding tube out, again. With the increased movement in his head and his hips getting stronger, he can pretty much move himself to wherever he needs to be to do what he wants. We're alternating the restraint with a brace that doesn't allow him to bend his elbow. While I detest both of these, we have no choice because he goes straight for that tube every time. The problem is both of these forms of restraint add to his frustration, which I totally understand.

He's also becoming very fixated on things. He overheard Todd and the surgeon talking yesterday morning about his bone flap (the part of his skull they took off). ALL afternoon, he would push on his head and say it was squishy and he wanted to know when he would get his bone flap back. I would tell him to be very careful pushing his head and that I wasn't sure when he'd get the flap back, he had to finish healing. He'd give me a very sweet "ok," then we'd go through it again a few minutes later. That alternated with "can you take this off" (arm restraint) and a few other complaints/questions all day long.

The hard part about being out of the ICU is having the nurse there to step in when you needed help moving him back up in bed, a quick break or to grab some food. You could motion to her though a big glass window and she would come right in and help. Here each nurse has 4 patients and you have to buzz them when you need something and it feels much more like you are bothering them. They told me last night that they look to parents to take on as much care as they are comfortable with. We've all been very hands on, but there are things I just can't do myself (like move him up in bed).

We've been told this is all part of the normal healing process from a brain injury and is just a phase. I'm just hoping we have the stamina to outlast it. To end on a positive note, he is starting to get a little louder when talking, so every 10-15 words is closer to full volume.