Re: babies, sleep training, and extended hospitalizations

September 16, 2008

When was diagnosed he was only 30 months and wasn’t the

worlds greatest sleeper. He spent about a week out of every month in the hospital

(for 5 months) and I think that there was a 2 week stent in there. Instead of

having a cot for myself, I slept with him. The second I got out of the bed he

would wake up but for the most part slept pretty well. Towards the end he

would even sleep through morning bloodwork and TPR.

Not sure if that will help or if that is what you are doing already.

From:

[mailto: ] On Behalf

Of son

Sent: September 15, 2008 11:37 PM

Subject: [ ] babies, sleep training, and extended

hospitalizations

Hi, all,

My husband and I are struggling with getting our son to sleep--and

stay asleep--in the hospital. It's a big challenge. We are lucky if

we get 4 hours in a night uninterrupted by nursing staff, and poor

Zach hasn't been outside his hospital room for 3 weeks and counting.

Z is 15 mos. and has AML, which means he will be in the hospital

pretty much solidly for the next 7-9 mos. He wasn't a very good

sleeper to begin with--Zach is our first and we've been real wusses

with sleep training. But now, 2 mos into chemo, we are desperate! Our

doctor recommended a combination of using Benadryl and a slightly

gentler version of crying it out (we are reassuring Zach

occasionally.) The Benadryl is very helpful, but I wonder about him

(or us!) developing a long-term dependancy.

I would love to hear any advice you have--or short of that--any

commiseration you have on offer.

Thanks--

September 16, 2008

Hi , I keep updated on Zach via his caring bridge, and I remember thinking some of your posts remind me of Chelsea, the sleepless nights, fighting sleep, ugh! I'll try to give you a quick synopsis of her sleep at the hospital, and maybe something will stick out to you. i remember how frustrating it was b/c you don't know if they're hurting, or if they just don't want to sleep and you don't want to take the chance to let them cry it out if they're hurting. Chelsea, AML, had chemo from 20 months until 29 months. We finished her last round in May! Just a little older than Zach.

At first we just rocked her to sleep like at home, but with all the interruptions, it was almost impossible, and it would take 1-2 hours or longer and she would fight, kick, arch the whole time. So by the 3rd or so round, we started laying in the crib with her until she fell asleep, again it worked for a while, but then we got to the point where I would have to put my leg over her legs, my arm over her upper body, just to keep her still. She would just move touch, grab, anything to keep herself awake. I seriously needed a straight jacket for her. There were also lots of nights she would wake up in the middle of the night and I would just bring her in bed with me in the parent bed. That was challenging b/c of the cords. She'd be plugged into the wall, so there were wires everywhere, it was crazy!

Finally, I think during the last round, I taught her how to put herself to sleep. Our rooms were all private, and there was a parent bed against the wall/windows with a curtain to pull which would give you some privacy. So I would tell her it was time for bed, lay her in the crib, then I would get in the parent bed (usually w/ my laptop) and pull the curtain. I left it open just enough that she could see my face. If she stood up I would say in a serious voice, "lay down." and she usually would, a few times I would have to get up and lay her down. But honestly, she figured it out and just knew, when I put her in there and got behind my curtain, it was time. No playing, no games, she couldn't play with my hair, touch me, kick me, nothing, so she just went to sleep. It was amazing, the last round was so much easier just b/c of the sleeping situation. I missed the snuggling and cuddling with her, but we had to do it this way for the sanity of all. Once she went to sleep, she was out. and I sometimes would walk down to eat, or go grab a drink or something. Such a relief.

You may not be able to use any of that, but, I would recommend, if you do anything, train the staff. Chelsea has a set bedtime that we were determined to keep consistent when everything in her life was chaos. 7:30. That's nearly impossible b/c shift change, but by the end, the nurses and care assistants all came to her room first to evaluate her and do her vitals so we could put her to sleep. If they couldn't get in there, they knew to wait until she was asleep to come in and check on her, or hook her up to fluids. The next thing you need to do is make a sign! Put it up on your door, and you don't have to be nice. ZACH is sleeping, RN's only ... or whatever you need to write. Just put some tape on it put it out when he's sleeping and take if off when he's awake. We also had those obnoxious speakers that don't turn off, so we could hear every announcement, and that was a problem, so with medical tape, we taped up a towel over the speaker. If you fold the towel up or use two towels, you can muffle it quite a bit. Just know you may miss announcements for parent dinners and treats in the parent room ;(

Okay, sorry to ramble, I can totally feel your pain though. Now, if only Chelsea could sleep as well as she did that last round at home. We're back to fighting sleep at home, but at least we're HOME! We're just appreciating that right now!

Carey

http://www.cbranam.blogspot.com/

http://www.marykay.com/cbranam516/default.aspx

[ ] babies, sleep training, and extended hospitalizations