Tuesday, May 15, 2018

We're going to lose her monitor

I was hoping that her doctor would reassure me and tell me that we weren't going to lose her monitor and that maybe there was something that I hadn't thought of.

That didn't happen.


  1. Does the machine not record the apnea episodes? What is the brand and model? The insanity of these medical experts who cannot comprehend that the episodes come and go?

    1. In the fifteen months since we've had it, it has never recorded a single apnea, ever. Which makes me roll my eyes so hard. And is probably the main source of tension between me and the pulmonology office (like do they really think that she's having bad sleep studies, when they were super, super bad especially in the beginning and then in the months in between having zero apneas... even though the thing would be alarming all night every night...). It has been extremely frustrating.

  2. Oh you are totally reasonable in your responses. You know what is happening but not why, and a random sleep study that misses what only happens sometimes but gets to determine if you keep the machine, well, this is all so crazy making, and upsetting, and your response is totally justified. Go gentle on yourself.

  3. Prayers for a sensible, safe resolution for Tessie, and some peace for you. xo

  4. Hi Cammie,
    I did not take the time to watch the entire video as I rarely have 15-20 minutes to spare (I like checking blogs and rskim over them in a couple of minutes), so this might not be relevant, but when the hospital said they had to take back the monitor, they encouraged us to buy one ourselves which we did. We paid 300€ for the exact same model (brand new they cost 16 000€), a Getemed Vitaguard. After a few months the cable to the Vitaguard stopped working and the hospital would not provide us with a new one. Buying it was expensive (170€ just for a cable !) so we switched to the Angelcare pads which had been gifted to us when our daughter was born. That has proved to be a good solution to keep our daughter safe even though it does not record the apnea episodes. Could something like that give you some peace of mind ?

  5. Praying for you and your sweet Tessie.

  6. Hi, Cammie, I'm an occasional reader of your blog, and I was wondering if Kennedy Krieger Institute had ever come up in your search for answers for Tessie? It's in Baltimore, and I actually work there (in communications; I'm not a clinician), but I keep thinking, maybe they could provide answers for you? They work with kids from all over the country, and specialize in rare diseases and disorders of the brain (and spine, too), as well as conditions like autism. I'm not trying to plug it or anything like that; I just want to help, and this is all I can think of... I just wish you could get a diagnosis, and then the right treatment for Tessie. (My apologies if you already received a diagnosis and I missed a mention of it.) And my apologies if I'm overstepping my bounds as an occasional reader in suggesting this or anything at all. I hope some resolution, however it may come about, is not far away.

  7. Cammie - if you set up a gofundme or equivalent, there are a TON of people who would contribute to the purchase of a home monitor for Tessie. Please think about it. We want to help.

  8. I was going to suggest a gofundme as well.


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