When Veronika was admitted to Monash Childrens hospital for her hip rehab, I was asked if Veronika had sleep apnea(as apnea’s can often happen in children with Down syndrome). I said I wasn’t convinced Veronika did have sleep apnea but at the same time I wasn’t convinced she didn’t . So the plan was to do a basic pulse oximetry overnight the second week Veronika was at Monash to ‘see what happens when she goes to sleep’. As soon as she went to sleep Veronika desat-ed and wasput on oxygen for the night to maintain her oxygen levels. In the morning the rehab doctor came to see us and she then asked the respiratory specialist to come see Veronika. Within an hour he was there and he decided to book Veronika in for a sleep study while we were there.
The sleep study was done a couple of nights later and the results weren’t quite what we expected.
Veronika was diagnosed with sleep apnea.
There are 2 types of sleep apnea, obstructive and Central.
The guess was if Veronika had apnea it would most likely be obstructive due to her trisomy 21, and removing tonsils and adenoids usually resolves this apnea….however we all know our girl writes her own book.
Veronika has central sleep apnea. Her brain doesn’t always tell her to breath when she’s asleep, and as a result she stops breathing multiple times an hour when she’s asleep.
So we now have a new night time routine, putting a nasal cannula on and giving her oxygen overnight. This is taking our girl some time to adjust to as she doesn’t like them. She now ‘tolerates’ having them put on, but is pulling them off multiple times a night. Im hoping/praying that my girl gets used to sleeping with the oxygen and starts sleeping better. If she sleeps better, doesn’t have apneas causing her to wake often, then the flow on effect will be amazing. Not just for Veronika but me too…..if my girl can finally sleep better that *should* mean I will too.
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