CRAP CPAP

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!

Sleep Study...again

The head bone's connected to da rainbow wires....

(Right after I took this picture Hannah looked at it and said, "That's beyond belief." This will make her later comment more relevant.)

The rainbow wires are connected to the junction box...


The junction box is (almost) connected to Molasses...Oh hear the words of the Mom...



This is so crazy. I am so impressed with my kid. She didn't complain once about all this stuff. Again. This is the third sleep study, and while she didn't have quite so many wires this time, I'm sure it still was a difficult time. We thank the beneficent, merciful neurologist who took the time to arrange alternative EEG adhesives because Hannah had asked about them--her only fear. When Hannah heard that there would be no "stickies" she said, "That's a relief! No, that's beyond relief!"

She was wired and ready for action, not sleep, so she wore her wires around while she colored and I read her joke book outloud. She thought she looked like the robot from an old Davey and Goliath show.


Getting ready for bed--almost done loading her up.


Her favorite part: the pulse oximeter!! Now she can play E.T. (red light on finger...'I'll be riiight heeere.')

I encourage you to click on the above picture so you can get a better idea of all the paraphernalia with which she was equipped. It all adds up to a great sleeping experience, don't you think?

She actually did very well, except for being extremely thirsty. Guess what? They had no straws. Impossible to drink from an open cup with the mask on. She woke up about every hour to get a drink. Fortunately they found a coffee stirrer, so she drank three cups of water through the stirrer during the course of the night. Built in Oral Motor exercises!

They cranked the humidifier as high as it could go, to keep her moist (the CPAP has a built in humidifier), but apparently she needed more. It was really hot in the room, and the mattresses were those vinyl hospital ones that reflect the heat back to where it came from. I had an identical bed right next to her, so I could pop up when she'd whisper (it's hard to talk with that mask on).

The good news is that she tolerated the CPAP quite well. She didn't rip it off in her sleep (what little she got), and she didn't complain about it. We should get the study results within 2-3 weeks and then, most likely, have her very own machine delivered.


The tech was excellent. He let Hannah complete her dream cycle before he woke us up (@ 6:15), which makes for a better arousal. He also had some good tips about getting the dried paste out of her hair. Don't add shampoo too soon. Let the shower soften it up for a good long time, then work most of it out before you add any soap. It worked like a charm!

We had our IHOP breakfast on the way home, and spent the rest of the day trying to fit in a very elusive nap.

Neurology

Yesterday we finally got to see the neurologist, Dr. David Leszczyszyn (say that three times fast. Or, better yet, just say it once. I'd like to hear it!). He specializes in sleep disorders in children. Let's see...I think we started on this path last February (actually it's almost been three years)! It took a surgery (T&A), a sleep study, and several other doctors visits to get this far. Hannah has central and obstructive apnea. She is an extremely restless sleeper--she sits, walks and talks in her sleep and never stays in one position for very long. Nobody wants to be in the same room with her at night!

Hannah is scheduled for another sleep study later this month. They'll be giving a CPAP machine a test drive to see if Hannah will tolerate it (she will if a doctor tells her she has to!).

Don't you want to have fun like this?

(June 2008, sleep study)

Hannah really doesn't mind the actual sleep study, it's getting off the sticky stuff that they use for the EKG leads that really bothers her.

From my point of view, the worst thing about sleep studies is that I get to sleep on one of those "comfortable" fold-out vinyl chairs. And get approximately 4.5 hours of sleep. You'd think that they'd encourage sleep at a sleep lab! The poor technologist works all night, coming in and out of the room to adjust wires and leads. Then he wants to go home in the morning! At 6 a.m.! All I want to do is sleep a couple more hours. Instead, while it's still dark out, we have to unhook the 20+ wires and take off the O2 and CO2 monitors, pulse oximeter (Nan's favorite--she likes to pretend she has a glowing finger like E.T. "I'll be riiiight heeere."). Getting those adhesives off gently takes a while. Then Hannah and I usually head out to IHOP and come home for a nap.

I am looking forward to this (hopefully) last sleep study. It is in a free-standing sleep lab, and I will get my own bed! Ahh, the decadence of horizontal sleeping! Thank you, VCU!

I liked this doctor, but he didn't really tell me anything new about Hannah. I was interested to hear his statistic that 80% of individuals with Down syndrome have sleep apnea. He also added that most sleep doctors believe that the other 20% also have apnea, but the doctors just were not able to catch it!

Apnea was not a surprise to us. We can sit and listen to Hannah stop breathing. She is quieter now that her tonsils are out; not as much snoring. But she does stop breathing frequently. We expect Hannah to need some sort of positive air pressure device for the rest of her life. I'm wondering how much extra energy Hannah will have once she adjusts to the machine. This could be trouble!

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Update on Fish-ka-bob: Yes, it is the fish's name. For short, Hannah's been calling him "K-Bob".

This is the year of strange and bizarre medical issues...

This is the year of strange and bizarre medical issues. They're not all strange, if you're familiar with Trisomy 21, but Hannah has not been the only one with odd medical goings-on.

Here's the short list: (it turns out that this is not very short....are you surprised?)
January: Hannah has check-up with Very Thorough (and amazing) new pediatrician. We follow up with a new ENT, and repeat x-rays for atlanto-axial instability (it is recommended to have x-rays in preschool years, and then again in adolescence). ENT schedules tonsillectomy and adenoidectomy due to large size and because of moderate-severe obstructive and central apneas. X-rays come back with borderline AAI (which is a wider-than-normal spacing between the top two vertebrae, risking pinching of the spinal cord). No gymnastics, horseback riding or skiing for Hannah.

My father slips on ice and crushes a lumbar vertebra. Is eventually scheduled for surgery.

February: Dad's surgery is successful in stabilizing his spine, however he develops a blood clot that threatening his spinal cord. Must have neurosurgery, which happens on the same day as Hannah's T&A surgery. Both patients come through successfully. Though, with Hannah, there is a pharmaceutical error which results in Hannah having no pain medication for the first 4 days post-op. A long and torturous recovery for her. Dad has physical therapy and eventually recovers most range of motion and ability.

March: Hannah is finally cleared from the ENT. The next day, Chris and Hannah were in a single car crash (bad weather, no merge lane, young driver). Hannah has abrasions and cuts to the head and face. Chris has broken two vertebrae (no spinal cord involvement, Hallelujah!), which turns his spring break into a week-long hospital stay. He is in a torso brace for the next 2 months. Kate has "active lymph nodes", which give us all a scare, but turns out to be caused by a latent case of Mono. No wonder she naps at college!


April: For Hannah's 10th birthday we take her to Disney World. My Dad comes to care for Chris (great idea, right? Two guys with broken backs!!). At Disney, Hannah comes down with a severe GI bug on the second day. (I'm talking SEVERE. Vomiting upwards of 30 times and diapers-for-a-week severe.) We spend 3 days at Florida Children's Hospital. During the last two days of vacation, James and I take turns with the same stomach flu. Hannah thinks the hospital is almost as much fun as Disney World--she loves doctors that much!



May: Chris is diagnosed with premature osteoporosis. There actually isn't a term for what he has, because osteoporosis by definition, is for people over 40. Basically, he has a mild brittle bone disease. Hence, the broken back (now we know why he broke his femur 2 years ago, which ended his competitive ice skating career).

June: Hannah has unexplained hip/thigh pain, only after sitting for prolongued periods (car trips 1 hour+). She is unable to stand straight up while getting out of the car. The pain resolves within 10-15 minutes after changing positions, but becomes more frequent over the next month or two. Hannah also has a follow-up sleep study to see if she still has apnea.

August: Yes, Hannah still has apnea. ENT doesn't know what to do about central apnea, or what could be still obstructing the respiratory pathway, so refers us to a neurologist to be seen in October. Her leg pain is less frequent. Maybe only once every 3 weeks or so.

September/October: Neurologist cancels appointment because of insurance issues. We head to back to Very Thorough Pediatrician, to see if she will prescribe a bi-pap machine, or whether we need more testing. Upon examination, Dr. M asks if Hannah has had any joint pain. Well...yes, in her left hip. I present my two theories on the hip pain: either it is hip subluxation (femoral neck falling out of the socket, then pain as it works its way back in), or it is because of Hannah's pronated feet. She has worn AFOs (braces for her ankles/feet) since she was 18 months old, but at the end of last year we switched to specialized inserts so Hannah could have more independence with getting her shoes on. Hannah liked the inserts at first, but in the past months had been avoiding them because they "hurt her toes". Dr M likes both theories, but also adds that joint pain can also be a symptom of disordered sleep.

We leave after 2.5 hours with orders for hip x-rays, referrals to pediatric orthopedist and neurology. X-rays show no evidence of damaged hip socket, so if it is hip subluxation, it isn't causing any damage to the joint at this point. Specialist appts are in November.

My mother also recently fell down and is dealing with an injury to her coccyx. Initial x-rays are clear, but the pain remains.

So...there you have it! At least, as much as I can remember! I've worn myself out!