Thursday, August 11, 2011

Exhausted


We started CPap therapy on Monday night. Nolan whimpered a few times while putting the mask and hose on, but was surprisingly accepting of the whole situation. We read our bedtime stories, then he continued to look at some books until he fell asleep. He was conked out by 9:00pm, and I was relieved that it went so easily.

He woke up at 11:00pm, crying with the blowing air shooting into his eyes (he had dislodged the mask). He was fussy about the whole set-up by that point, and we figured 2 hours for the first night was good enough. We took off the CPap and let him sleep.

Then came Tuesday.

Terrible, terrible Tuesday.

Horrific Tuesday.


A too-big mask hangs over Nolan's upper lip.

He wasn't in a great mood on Tuesday. Maybe because he had slept poorly the night before. Maybe because his stomach has been acting up more than usual. Maybe because he's three-almost-four, and he just felt like being cranky.

Anyhow, he was not going along with the CPap plan on Tuesday night. We put the mask on at 8:00pm. He screamed. He hollered. He cried.

We tried loosening the mask when he cried that it was hurting him.

We tried adjusting the straps when he cried that it was "too tight."

We tried tightening the mask when air leaked out of the top of the mask.

It didn't matter, he just continued to cry. This was a night that I was so, so grateful to have a caring spouse. We took shifts in the boys' room, trying to get Nolan to calm down and trying to get the perfect fit on the mask.

When Dennis was upstairs and I was downstairs, Nolan would scream, "Mommy, HELP ME! HELP ME! Mommy, come here!"

It was awful. I was sobbing.

Is CPap worth it? Will it even work? Will he even accept it? Is this causing more trauma and torture than a surgical fix for his apnea and reflux? Would the "surgical fix" even fix the problem? What are we going to do?

I pulled myself together and traded shifts with Dennis. I put on my Calm Tough Mom face and sat next to the hysterical Nolan.

"Nolan, crying isn't helping. I can't understand what you are saying. If you want Mommy to stay in your room, you have to stop crying. I will read you a book, but you have to stop crying."

I doubted that would work with a three-almost-four year old sent over the edge of sanity by a scary air blowing mask. Surprisingly, it worked.

Maybe because it was 11:00pm and he was really tired.
Maybe because he was tired of fighting.
Maybe because he is three-almost-four and trusts his Mommy.

His hysterics calmed and he fell asleep. He stayed asleep until 2:00am. When he woke up crying, we took the mask off so he could sleep through the rest of the night.

Last night was Wednesday. We put the mask on and there were no hysterics. We read Ferdinand the Bull and the Research Guide on Pirates (to the Magic Tree House series). Nolan fell asleep as I was finishing the biography of Captain Kidd.

The lack of tears and drama/trauma were a welcome relief. Unfortunately, he kept knocking off the mask - every 15 minutes or so, the mask would be hanging loose from his face. There is no alarm when he knocks it off, so I stayed up until midnight to continually replace it, then went to bed. He woke at 1:30am with the mask dangling around his neck, crying.

We got about 2 hours of CPap therapy last night.

The respiratory therapist said the company that makes the toddler-sized masks has discontinued the "small" mask. Nolan currently has a medium sized "mini me" mask and headgear (this fits most preschoolers). Fortunately, the head gear does come in a smaller size. We don't have many options with regard to the mask: we could go to a full-face mask, but the danger of Nolan throwing up in the night into a full-faced mask is very real. We wouldn't want him to suffocate if he got ill in the night: if we try a full face mask, we will need an apnea monitor and alarm. Another option is to try arm restraints. I'm not a fan of that last option.

We have a month to try different configurations, but there aren't a lot of different options available for a child as small as Nolan. The popular "kidsta" masks found online are for kids over the age of 7: if Nolan can't fit into the medium "toddler" mask, there is no way the masks for kids "over the age of 7" will fit.

Anyhow, tonight is Thursday. We will soldier on and try the therapy again tonight. Hopefully, there will be no tears. Hopefully, he will leave the mask on in his sleep.

Hopefully, this will work.

5 comments:

TheSweetOne said...

Sending good sleep vibes your way. Hope things become clearer so you can make the right decision about whether this fight is worthwhile... Hang in there! we're pullin' for yah.

tammy said...

I am so far behind on my blogs and for some reason, stopped my snapfish.com JTC picture uploads to come check out how Nolan was doing. I'm so sorry you're going through this Leah and my heart just reaches out to Nolan. He' such a lucky little boy to have the family he does. I truly can't imagine having to make such a decision between the mask and surgery. You all have overcome so much in his short four years, and you will this too. My thoughts and prayers are with you all - for sleep, sleep, and more sleep! Hugs, hugs, triple hugs!

Julia said...

I'm so sorry this is so hard. At least he was more relaxed about having the mask on, so that's progress, even if he kept taking it off. What about the wig tape that people use to help keep a CI processor on a child's head? Would that provide just enough adhesion that he couldn't really dislodge it while asleep?

leah said...

I actually thought about tape, but it wouldn't really work. For one thing, it has a soft silicone gel type base, and it is held in place with two strong velcro straps. Since he is dislodging the straps, he would easily dislodge the tape (the mask isn't that easy to dislodge - even when he's asleep, he is forcibly removing it). Arm restraints are a viable option, but we may end up trying a full-face mask.

rouchi said...

My goodness, this must be so so hard for you as a mum and so much for lil Nolan.Sometimes its so tough to go on putting a strong facade and keep going.I admire you all for all that you guys are doing and pulling along trying to things to the best.Its tough for anyone to sleep with that thing stuck on your mouth all night.Wish you could find an option.Sending you peaceful and happy vibes and some sound sleep for all of you.All the best Leah !!