Letting Go

I think it's Stockholm Syndrome where an abductee sympathizes with their kidnapper. In a similar (stay with me!) way I am having a hard time letting go of the CPAP machine!! The similarity comes from the fact that Emma's sleep disorder, and associated precautions have held us captive for a long time.

Almost three years old, Emma has rarely napped anywhere but home and has stayed anywhere overnight without full machines on a very rare occasion, and only with one of us. When I look back to the early days, if I was going to be driving for more than 15 minutes I would take the pulse-ox with me!!

More recently we relaxed a lot, allowing her to nap without the CPAP, and even the odd night without it. There has been a notable difference in her sleep, especially the lack of snoring and much less sweating, even without the CPAP.

Last night I suggested we don't tell the nurses about the news right away, as I wanted to keep her on the CPAP while she is is congested. (A trip to the doctors confirmed she does NOT have an ear infection, probably just a mild respiratory infection.)

Scott did not agree, and we did tell the nurse she could leave her off the CPAP. I added the suggestion that she could put it on if her SATS dropped too low!!

Apparently she did very well despite the congestion and woke up alert and rested.

Still, I needed more information than we got yesterday, so I emailed her doctor for more specifics on what has changed in her diagnosis. It's a fair question as I regularly have to list her medical conditions!

Here's what he wrote back:
The diagnosis of obstructive sleep apnea is based on something called the “apnea-hypopnea index” or AHI, which is how many times an hour air flow through the nose and mouth cease or decrease by 50%. For adults, an AHI <>

Emma’s sleep study had an AHI of 1.6, which is “borderline mildly abnormal”; in the past her AHI was much higher and only got down to the AHI of this study when she used CPAP. Her oxygen saturations and exhaled carbon dioxide levels remained normal throughout the whole study. Thus, her OSA is MUCH improved and practically gone (or only boderline mildly abornormal) and CPAP probably wouldn’t improve it much when she is well. But, since everyone has more OSA when they are sick (just think about how you sleep when you have nasal congestion...), Emma’s AHI/OSA will probably worsen when she is sick so she will probably benefit from CPAP when she is sick.

Therefore, I can relax that she is greatly improved (I love stats!) and if we feel it's tough for her we can put the CPAP on. Interestingly in the past it is when she needs it most that we have had the greatest difficulty keeping it on her!! So she's been coping well for some time!

We pondered the loss of the nurses last night. On one hand we will have the freedom to come home whenever, wear what we want around the house, and go to bed early if we need to! On the other hand, we take great comfort in knowing our kids (they sometimes check on Toby for me!) are being cared for round the clock.

I can't imagine how it will be for Dorothy if she has to leave. Emma was Dorothy's first patient in pediatrics and she has been with her 4+ nights a week for over 18 months! We would like to keep in touch and maybe Dorothy's 8 year old daughter can finally meet the little girl she helps pick gifts for! (Maybe she'll babysit!!)

Toby's doing better today. He's eating more and sleeping better on his regular schedule. Today has been a constant rotation of wiping Toby's nose, then Emma's, and of course mine too now!