Me? I’m attempting to go through our journey and countdown 31 things I used to have to do for Danny, that I don’t have to anymore. This exercise has already taken me down roads I haven’t traveled in my mind in quite some time. It has, and will allow me to be reminded just how far we really have come since August 16, 2005.
Weekends seem to never happen the way I dream they will. By the time my to-dos are complete, lugging out the laptop, just doesn’t sound good to me.
Yet, I want to keep going. I want to finish this 31-Day Writing Challenge. It just might not come out each day, but one way or another, you’re going to get 31 things that I don’t have to do or worry about for Danny any longer.
19. Sleeping in a Hospital Bed
18. Draw Sheets and Positioning Pillows
17. The Turning Timer
All of these are related and so I’m grouping them together, and making up for the lost entries from the weekend.
For more than two years, Danny slept in a hospital bed, on a waterproof hospital mattress in his parent’s living room.
The bed could go up, go down. You could raise the head or the foot of the bed with just the touch of a button. However, it sounded like a freight train with the crank shaft exposed underneath the bed. I will never forget that sound.
For a long time, he needed the hospital bed. He was sick, immobile and unable to speak. So, we replicated what they did for him in the hospital, and probably did a better job since we only had one patient.
He had clean sheets just about every day; a fitted sheet, a draw sheet and a flat sheet. All of it was meticulously wrinkle free and folded just so. We wanted nothing wrinkled or lumpy underneath him, as it could create pressure sores.
During the day, he would go between sittings in his Tilt-n-Space wheelchair, to getting back in the bed for naps. Healing brains need rest, rest, rest.
It was like this every day, all day, each day, multiple times per day.
Because he’d been sitting on his bum and his back in his wheelchair, when we placed him in the bed, we’d turn him on his side.
To do this safely and without injury to him or to us, we’d use the draw sheet to turn him and then tuck the positioning pillows under the draw sheet to keep him on his side.
There was a science to it.
He’d be on his right for a while and then turn to his left. He might be awake or he might be conked out asleep. Either way, you couldn’t leave him that way for a really long period of time.
The timer. Remember the timer for the weight shifts? Well, we had to do the same thing for him when he was in bed, even at night.
As an infant, Corbin would wake up every three hours to nurse. Once he weaned himself and began sleeping more or less through the night, I started sleeping in the room with Danny on the nights I didn’t have to work the next day. We had a separate twin bed that I would push next to the hospital bed.
The alarm on my phone would go off every three hours so I could turn Danny and reposition him. I went from waking every three hours with Corbin, to waking every three hours with Danny.
Not only was this important for pressure and bed sores, but Danny was also at a higher risk of getting pneumonia again. Movement is important.
On the nights that I had to work the following day, I would sleep in my room upstairs. I had our bed in there and yet I still slept only on my side of it. I would put a body pillow down the middle and hold onto it. I would cry into it, pray into it. I remember reaching to the empty space and trying to remember what it was like to have Danny in our bed, instead of in a hospital bed downstairs hooked up to a bunch of machines. I tried to remember how he snored and how I always had to be touching him; just a foot on his leg cause we both get so hot. It was lonely, save the times I’d snuggle a cute baby Corbin in there with me.
I would pray that we would be able to share our bed again, even if his snoring would raise the rafters.
We do sleep in our bed together; our first mattress set that we got when we were married almost 11 years ago. It’s got a big mountain in the middle (probably from all that time alone) and is too soft for Danny to easily turn himself in bed (it’s time for a new set), but it’s our bed. No more his and hers. No bed railings to contend with and no draw sheet, no positioning pillows. Just us.
To this day, I get up in the night with Danny and still with Corbin, as necessary. Danny wakes up at least once a night for the restroom and getting comfortable again. Danny is able to turn himself onto his right side only, but cannot scoot himself over. All the turning from his side, to his back, can move him up in the bed. So, he usually wakes me up to help pull him down-this includes me grabbing him by the ankles and pulling, and him pushing against the wall. Not exactly easy to pull dead weight in a soft bed, but we make it work.
However, I have two rules:
1. When the lights go out, shut your mouth-I know that may sound cruel, but it rhymes and is easy for him to remember. Danny has a habit of waiting to discuss heavy issues once we get settled in bed and while I’m trying to shut down my brain in order to sleep. Once he’s gotten whatever is bothering him off his chest, he falls asleep in exactly 2.455 seconds. Me? I’m wide awake for another hour.
2. For non-emergencies, you can wake me up between 2am-4am– my alarm clock goes off at 6am each weekday. He has a tendency to wake me up at 5:54am, like this morning, or just after we’ve fallen asleep. Thus, the rule. We’re working on it, but his normal pattern is that he wakes me up about 3am.
It’s so good to have our own room, with our own bed. We are thankful we do not have the need for a hospital bed. It is truly a blessing and a lot less work.