Saturday, November 3, 2012

Medical Alarms Me Make Twitch - a Bipap Update

Dean's bipap arrived on the 23rd, so we've had a little over a week on it.

The first few nights he wore it for an hour or two here and there, then had one night that was not so good, and then BOOM! Wore it through the night. Now, when I say that, I mean that he still does pull it off a few times here and there, but Dean will tolerate it easily (usually :)) when we put it back on his face. We switched masks from the original one that Dean had:

To this one:

This is the ResMed Pixie mask, which is better for smaller kids and belly sleepers. I like the lower profile of the mask.

The respiratory therapist, Nancy, who set up the whole shebang for us, set some alarms on the bipap to let us know if the tubing got blocked or if there was a "high leak" - which basically meant that either the tubing detached from the mask or Dean pulled the mask off his face.

I HATE medical alarms. From the minute Dean made it to the NICU, alarms were always going off. Hold him tenderly, BING BING BING... oops, wrong position, his O2 sats are heading down, ok, adjust, we're good again.

Then he came home with an apnea monitor, which any parent who has had one can tell you THEY ARE DEAFENING. They should sell them to people as a burglary deterrent. Luckily, that alarm never went off when it was attached to Dean.

Then there was the pulse oximeter, with its cutesy "Deet deet deet, deet deet" cadence. Cutesy until you realized that it meant your kid's O2 levels were darting down for a minute. I remember even after Dean was done with that thing, I heard one go off in Children's Hospital in Boston and my head whipped around like someone had shocked me.

We got a new pulse oximeter once Dean started needing oxygen at night, and the medical supply company is lucky I haven't thrown it through the window. Thankfully, Dean hasn't needed oxygen since, February? Something like that. But it was so unnerving to try to lie down in bed when you know that any minute, it could go off, BOOP BOOP BOOP, BOOP BOOP BOOP. So loud. I slept with both eyes open, basically, ready to dart out of bed (usually, I slept IN Dean's bed so I was right there) and put his oxygen mask back on his face.

Relatively speaking, the bipap alarm is pretty tame. It has a max volume level that would satisfy an outgoing librarian, and its message is also less stress-inducing. The alarm here doesn't mean that Dean is not getting oxygen, just that he took the dang thing off and needs it back on to get quality sleep.

Overall, the bipap seems to work well for Dean, so most nights he is getting about 7-8 hours on the bipap. I call that a success. Nancy said that Dean is doing fabulously with it and that she's very impressed. I told her what a trooper he is about everything he's been through. The icing on the cake is that one of Dean's teachers mentioned how much of a difference it has made in his energy level at school since being on it. Win! Way to go, Deano. :)


Janet Gulley said...

Great job Deano! And I am so excited for you with the added energy. Can't imagine how much better he must feel getting some great sleep.

Kevin said...

I just wrote a note to see if I could get the the spam robot on the first try. Good job Deano!

Ali Foley Shenk said...

I know, I tried to turn that off and then I just got the craziest spam from all over. :/

Giulia said...

Great job, Dean :)

Do you think that Dean can learn on how to chart his energy levels, tiredness and such ?
I don't say with something very complicated, but maybe a system of smileys, the weather...
It can work also for emotions, moods...

Take care

Ali Foley Shenk said...

Giulia, that's a cute idea!

Dean's emotions, energy, etc... he wears them on his sleeve. We can tell really easily when he is more tired, less tired, grumpier, happier, etc. And actually, he's hardly ever grumpy! At least not for long. :) Such a happy guy!

Giulia said...

Thank you :)

Such a system can help Dean be more aware on these differences.
So, he can learn to tell you or someone else : "I'm not feeling well"