In 6 days, Josiah averaged 21 hours of sleep. Do the math. That’s 3.5 hours per night. He didn’t actually sleep 3.5 hours per night. That’s just an average. Some nights he didn’t sleep at all. At one point he was awake for 44 hours straight.
When Josiah’s awake, we are awake. We have to be. He can’t be left unattended. Though our boy seems quite happy bouncing around at all hours of the day and night, we aren’t. I for one get extremely cranky. I become impatient. I snap at people. Sleep deprivation is not pretty.
After days and days of very limited sleep, with Josiah’s behaviors escalating out of control, the ER was our best option. In the triage room blood was drawn and IV fluids were given. The next step was to give Josiah medication to calm him down and get him to sleep.
He was given Ativan, a sedative, along with Benadryl, which can be used to treat insomnia. This ‘cocktail’ almost always knocks people out, they told me.
It didn’t. Josiah was still vibrating hours later. A second dose of Ativan was given, certain to do the trick. Not so much.
They suggested Klonopin, another sedative.Then an injection of Haldol, intended to calm him down enough to sleep. Nothing!
The last step was to give Josiah a small dose of Zyprexa. I was against it. Zyprexa is the medication Josiah took that packed on 42 pounds in a very short time. We had just spent the entire month of December weaning him slowly off Zyprexa. Why would we want to reintroduce it now?
The psychiatrist they brought to the ER assured me Zyprexa was our only answer at this point and would more than likely do the trick. He consulted with another psychiatrist when I resisted. They both agreed we were pretty much out of options. Zyprexa would work. Josiah would sleep.
Josiah proved them wrong. After all those medications, 15 hours later, he was still wired.
We were transferred to a room on the 10th floor of the hospital. By this point Josiah was giggling hysterically. He could not stop laughing. It was really rather frightening to see him this way.
Rick arrived when we got to the room, holding Josiah in a bear hug for hours while I slept on the couch bed. He wasn’t calming down. When it was my turn, I laid my full body weight on top of Josiah, wrapping my legs around him, wedging them under the bars of the bed rail to keep him from wiggling free. It felt a lot like a wrestling match. We were both sweating quite a bit. Josiah was still giggling.
45 minutes later, he stopped laughing. His body relaxed a bit.
Five medications intended to sedate and/or calm him, deep pressure in the form of adult bodies pressed tightly against him, holding his arms and legs still for long stretches of time and over 20 hours with no sleep before Josiah finally began to settle down. Incredible!
A few hours later, everything changed. The door to his room opened. A new bed was wheeled in.
Just like that, Rick and I were FREE. We were FREE from restraining our child. We were FREE from sleep deprivation. We were FREE from trying to block Josiah from repeatedly banging his head.
It was like the skies opened up, the angels started singing and we could see light at the end of the tunnel. Best of all, Josiah LOVES it. We can zip him up inside and he can party all night long if he wants to.
I know they think I’m kidding, but I’m hitching this thing to our van and dragging it down the freeway when it’s time to go home.
So happy about this bed. I think it may make him feel safe and secure, like his own little club house. Like camping out! Praise God for whomever invented this bed!
It’s amazing isn’t it? Turns out there are quite a few versions of beds like this, made to keep people ‘safe’ as they sleep. We are just so grateful Texas Children’s has one and blessed to be able to use it for Josiah while he is there. When I crawl inside with him I feel like I should be singing Kumbaya and toasting smores!
So glad Josiah is content and you can get some rest! I can’t imagine so many sleepless hours. I will pray you get rest when you return home, too! My little girl is actually at Texas Children’s also, one floor below Josiah doing the opposite, napping a lot!
Thanks Holly! So sorry to hear you are camping out there too! I’ll keep you guys in my prayers!! Hope things improve quickly for you and you are able to return home soon!