Having a good night's sleep isn't possible for Vera. And now we know why.The little piglet has severe Obstructive Sleep Apnea. This is the finding coming out of the sleep study that she went through recently.
The signs were all there that there was something wrong with her breathing when she sleeps: snoring, stridor, heaving in a laboured way, irregular in out breaths - fast ones followed by a pause, profuse sweating, tossing and turning, occasional choking, and of course, eye bags and lethargy the next day.
How bad is it? Well, her oxygen saturation falls below 85% for 1/3 of her sleep; normal is 100%. At its lowest, it is 52%. Now that's low. I can imagine how it's like for her - sometimes when a pillow covers my face during sleep and I can feel myself getting drowsy on the CO2, perhaps that's what she's going through.
From now on, Vera will have to be on CPAP. She will have to wear a face mask when she sleeps. This means we'll have our first "machine" for Vera. (I know more will come later, but just not now.) The news has been a little depressing for me. Just when we'd settle into g-tube feeding, there's this. It's like I try to get a grip on the situation, and once you're more or less settled, you've got to adapt to something else again. Change seems to be the only constant. Yet another hump to handle on this bumpy Trisomy 18 journey!
5 comments:
Hi Ying May & Ian, We understand how it feel that when it seem things going fine for Vera and next moment come another hump to handle. Hey, hang in there we in together, if U need help in sourcing for the CPAP machine or the mask for Vera. Call us anytime.
Rebekah & Jinxiong
May,
All I can say is thank God they discovered this. How long have doctors just been ignoring these things and blaming everything on the trisomy?
What would be the long term effect of ignoring this? It can't be good, that's for sure.
Think of the opportunities for little Vera once she starts sleeping better. I'll bet your whole world will change.
I am also pleased that you have doctors who care and who order these tests. In my country the doctors tell you that they are "doing everything" and then when the baby is in extremis, narcotics go missing.
Here's to hoping for better nights and days for all of you.
Barb
Annie's mom
www.anniefarlow.com
May, for a minute there I thought I was reading my Annabel's blog, until I realized my writing is not near a good as yours. I am so glad that you had the test and found out the results. Annabel did sleep better on the c-pap for the week that it worked. We are still struggle with the bi-pap. After they begin the new machines our babies should have follow up to titrate their levels. Again our can be done until Aug 26, I think if I came to singapore it could be much sooner right?Also I love the last post you made about her laughter. I love your writing and will hope you continue. Thank you for sharing all this medical information with us about sweet Vera, it just help to know.
My daughter has a 2 year old son with mitochondrial disease who is on a cpap at night as well as a feeding tube. Her blog is lindenberriesandrosebudsblogspot.com.I know she could be helpful to you.
Hang in there! Thank God you found this out early and will be praying the Vera will get use to the mask quickly!
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