March 24, 2009


Blogger is not my friend these days...first it wouldn't let me space my paragraphs in the last post, and now it won't let me strike out the word CRAP in my title. I cannot fully blame Blogger because my laptop has never behaved well in its 15 months of existence. But hey! Lookie there! It did work out after all! Now if only I could strike it from our nighttime routine things would be well again.

I'm probably going to go into way too much detail for most of you, but I have had some questions about the CPAP. Feel free to fall asleep, using a regular, uninterrupted breathing pattern if you are bored with this.

Here it is in all its glory and fury. Can you believe that hose is 6 feet long? How many times do you think it will fit around a portion of Hannah's body while she's sleeping? (The Answer Is: Three, if it is still attached to the box.) This beautiful piece of medical equipment can be yours for just the cost of 3 sleep studies (the latest one ran $1400), one T&A surgery, a few co-pays and a monthly rental charge of $270, plus an added $12.79/month for "supplies". Thank you, Mr. CBRE Human Resources Department for our HMO that covered everything except for $100 of a sleep study (with no hassles whatsoever)!

Hannah is doing well coping with the CPAP. I have been sleeping in her room. Fortunately she has twin beds, so I am relatively comfortable. The first two nights went well; she awakened only once each night needing adjustment to her mask. When she nudges the mask, the seal is broken and the pressurized air whooshes on out. It's fairly loud. I can hear it if I'm 2 rooms away on the computer, but that's with my superpowered mother ears--you know the ones that Dads don't have? So, for the first nights I'd get up and fix her mask. I was thrilled to see that she was not flopping around, changing positions every 30-45 minutes (which is common for individuals with Ds--you do NOT want to share a bed with them! They are so restless.).

That was the honeymoon period.

I was hoping that her lifelong restlessness was a byproduct of her apnea, and now, with our brand new breathing apparatus she wouldn't move around as much. Umm. No.

Since those first two nights Hannah has returned to her regular restless self. On the bad nights, her mask needs adjusting every 45 minutes. On good nights she adjusts it herself and she needs help only two or three times to fix the hose or put her mask back on (she can take it off in her sleep--she's so talented!)

Day/Night 4 was a difficult time. Hannah was upset--I think she was thinking that the CPAP was going to be a one-night stand, like a sleep study is. She was unhappy, even weepy, at different times during the day, clearly stating that she did not want the CPAP anymore. By evening James and I decided to stop discussing it with her because it is a non-negotiable item. She HAS to get used to it, and she will HAVE to adapt to sleeping with it. After explaining our stance, she ponied up and stopped complaining.

She hasn't balked at the mask since. She is used to having some time awake in bed to listen to music or quietly read for a bit, but now she can't. She can't wear her glasses with the mask, and the white noise, while quiet, makes it difficult to hear music. So it's a new routine for her.

James took a night or two over the weekend, so I got a break. Last night was the best yet--she only needed help once! And tonight, Katie (home on Spring Break) is taking the overnight shift!

Hannah has learned how to remove the mask in the morning, and how to turn off the machine. I hesitated to teach her this, thinking that once she's alone in her room she may just decide to take it off all night. But it's more of a safety thing. If she needs to get out of bed for some reason, she needs to know how to detach from the machinery.

Last Friday night Hannah's neurologist was the speaker for our Ds support group. I had a chance to talk with him, and he suggested we try a different type of mask. We are waiting for the home health office to bring it over to try. Apparently most of the children who have apnea are not as mobile as Hannah (kids with more involved physical or medical disabilities), so the home health nurse doesn't really know what to do about Hannah and her leaky mask. This new one is smaller, and fits in her nose rather than covering it. They call it a nose pillow. I cannot imagine it! It sounds worse than what we've got, but if it doesn't dislodge easily, then we want it!

For now, the girl is happy enough. Just click on this picture to see a ridiculous grin. I think that's mostly because Katie was behind the camera, but we'll take it no matter what the reason!


Arizona mom to eight said...

That does look uncomfortable to me, I can see why she tosses adn turns a lot. No Way my three with Ds would put up with that, especially Meghan.

I would love to bend your ear on homeschooling, Meghan's services coordinator has fits about it, thinks she needs more socialization. Sigh.

Kris in Tucson

Anonymous said...

I am so sorry to hear about Hannahs struggles with the CPAP machine.

Do you think the three week rule will work know...give it three weeks to get use too, once you get the mask that fits the best? Are you laughing at that? :) I wish I had some advice to give.

Hannah, I LOVE your funny grin behind your mask. The hose on the mask on your face reminds me of my most favorite elephant.

Hugs...and you will be in my thoughts and prayers....for rest, peace and sleep!

Jay Hogan said...

Interestingly enough, I am the parent with subsonic hearing in our family. Good thing too since Catherine just incorporates a crying Lois into her dream.

Wendy said...

This time I don't think you can blame your computer.... I have those same troubles with blogger. Lately it has been posting things it shouldn't and other times when I have posted it isn't there!! (just ask Jill from SpIGot)

Oh Yes...the power of a missing big sibling to bring those big goofy grins to youger sibs! Katie what a fabulous big sister you are.....and turning into quite a young woman I might add! I am guessing that the girls will have a grand time tonight and thoughts of the CPAP....what CPAP?

I sure hope the new mask is something so fabulous and all he kinks will magically disapear and the CPAP will be a thing to look forward too.... and more importantly she will be able to read her books! I know how she loves that!

PS: if not what about those book handheld reading magnifying squares to use for night time reading pleasure? Or maybe an earplug for music?

PPS: Katie I want my room back!

Kate said...

Wendy (aka MamAAA!)
You canNOT have my room!

Need I remind you that you didn't return my baby Katie when I asked??


Wendy said...


Besides can you really blame me for not returning the baby, I mean REALLY??!! I have a problem my name is wendy and I like BABIES!!

But I really like your room!!

Beverly said...

that machine doesnt look fun at all. No wonder Noah's dr thinks it will be last on our list of things to try!