Day 22

Yesterday, everything went to hell in a handbasket.

It started the night before last after they had completely stopped the sedation. Big Kid totally flipped out. He was violently fighting everything---trying to pull tubes, kick himself out of the bed, throwing himself against the sides of the bed. gah

When I got there in the morning, he was restrained, but still at it. They'd had to dial his oxygen back up to 90% because he wasn't getting enough of it.

Sometime during the night he was prescribed a strong anti-psychotic, but it didn't seem to be doing much. The nurse or I would hold him down and tell him sternly that he needed to calm down. He'd go limp for a few minutes and then start right back up.

They had to replace one of the IV's in his arm. I don't know if the nurse who did it forgot to clip the restraint on Big Kid's arm, or if he somehow worked it loose, but I had to practically throw myself on him when he tried to pull out his feeding tube (it's in his nose).

At one point, I thought he was having a seizure. He went completely rigid and his back was arched about 3 inches off the bed. His face was purple, and his heart rate skyrocketed.

"There is something very wrong!" I called out to the nurse. "We need to do something!"

"He's on the maximum dose allowed right now."

"Well it's not working", I snapped. We had been waiting for the anti-psychotic in IV form, but it was taking forever. Finally she got a syringe and plunged it into his arm. It calmed him down. A little.

In the afternoon, they put him back on the sedation. Then I drove 3 hours back and forth with the guys to get our flu shots.

When I got back, the hospital called. The doctors wanted to put a feeding tube into his stomach, because the one in his nose was obviously a comfort issue, and it looks like he's going to be on the vent for a lot longer than hoped.

They can't wean him off the vent until they wean him off the sedation (it represses respiratory functions), and they can't wean him off the sedation until they can control the psychiatric issues.

Something about this had been tickling what's left of my brain all day. I woke up at 2:30 this morning and I recognized the pattern.

Rapid-cycling. He's having rage attacks.

A couple of years ago before we found the right cocktail of meds, Big Kid would have uncontrollable rage attacks. Of course he could control them to a point, but if he went over it, the attacks would get too big for him to stop. He would cease for about 10 minutes or so and then start right back up again, like he was stuck in a loop. Unless we could hold him down and practically shovel his meds into him, he would go on and on and on for hours until he finally collapsed in exhaustion.

He's been stable for more than a year on his meds. And the hospital was continuing them this whole time. Right?

I called the night-shift nurse and asked her to please make a note about this to the doctor when he rounds early in the morning. I'd be in shortly after to talk with him about it.

She said, you know, I've been going over his chart tonight and reviewing the meds he's on, why don't we check it against the meds he normally takes?

So we did. They're not giving him one med, because it's for high blood pressure, and since he was having so many issues with his pressure, they were doing something else.

And he's not on Risperdone. Which he takes to control his rage attacks.

There isn't any notation of why he isn't on it. It could be that it was overlooked while they were busy trying to save his life, or it could have been contraindicated with other medication so they replaced it with something that isn't working. If that's the case, I could have told them that we've been through the pharmaceutical gamut and nothing else had worked. ;-)

Please pray that this is the answer. Our boy is really suffering. I can't imagine the case of the screaming meemies he must be having, and the horror of not being able to express it.

Thanks again for all your good wishes and comments.