D+6: Cheryl returns (for real this time)

Well, last night was pretty brutal. Ryan, extremely restless and agitated, slept for about an hour. I slept for about 15 minutes (more on that later). It just seemed like he could not get comfortable. He was kicking his legs like crazy and thrashing his body around. One thing that we've been struggling with is whether or not he's in pain. I've given this a lot of thought, and I don't think that the restlessness results from pain. It's more like a Charley horse, but throughout his entire body. We have tried a number of sedatives and pain medications to address the issue. None have worked well up to this point. Which reminds me -- Ryan dabbled with morphine for the first time last night (with no success).

Ryan finally fell asleep around 3:30am and I curled up at the bottom of his bed. About 15 minutes later, I was awakened by the sound of Ryan's pulse oximeter alarm (it beeps if his oxygen saturation dips too low or if the contact is removed from his toe while the machine is on). So I looked up to see what position Ryan was laying in. Ryan wasn't in the bed. I froze for a millisecond (which seemed like 10 minutes) trying to reconcile what I was seeing against what I knew to be possible. I start looking around the room and I see Ryan sitting down right next to the bed. He had fallen off the bed. You can't possibly imagine how terrified I was at that moment. I picked Ryan up and set him on the bed. He wasn't crying and I quickly checked his lines. They were all in place and there was no evidence that they had been pulled out of his chest. Keep in mind that we're talking about a 2-3 foot fall, while sleeping, with plastic tubes coming out of your chest anchored to a 90 lb. machine. I think there are roughly 100 or so potential scenarios that involve Ryan falling off the bed. Only one of them results in (a) lines staying in Ryan's body and (b) no significant damage to Ryan's head/organs/etc. Given everything else going on right now, it seems strange to say that we got lucky last night, but we did. Big time.

That was the final straw for me. I was totally burnt from lack of sleep and insane stress. I called Cheryl at 6:30am in pretty bad shape. Luckily, she was feeling better and was able to come down later in the afternoon to relieve me. The rest of the day was pretty uneventful. Ryan managed to grab a nap or two during the day. We also spoke to Dr. Graham about some new things we could try to get Ryan's restlessness under control. Looks like the Ativan dose is going to go up (actually, same dose but administered more frequently) and we are adding a new drug called Clonopine. The Clonopine helps control blood pressure but also works as a mild sedative.

So, Dad is 2/3 in trips to Ryan involving serious incident. I have to be honest, this one bothered me a lot. Ryan is completely dependent on me to look out for him and I failed in a fundamental and inexcusable way last night.