Towards the end of the school year an upper respiratory infection landed us in the ER with Croup. Lydia's overnight oxygen saturations were low and her breathing was labored with retractions. They gave her a steroid shot that lasted for 72 hours and she was able to sleep and recover somewhat.
(May 2021)
Lydia had her annual visit with the providers in the 22q11 clinic just before her birthday.
(See previous post for updates on everything else)
I sent videos of her sleeping prior to our visit. Dr. Arganbright (ENT) and Dr. Ingram (Sleep) were ready for CPAP that day in clinic based off the videos. Obstructive Sleep Apnea due to enlarged adenoids and floppy supraglottis. The adenoids were only partially removed because of her submucous cleft palate repair and the need to close off that portion of the nasal cavity for speech. Her airway has been floppy since birth, that's why she had a trach. Now it's floppy again but not as severe so we are on the path toward CPAP. To get CPAP you have to have a sleep study and that is a months long waiting list, unless your mom's videos are scary enough that you get bumped to the top of the list and are scheduled for a sleep study in two weeks.
Towards the middle of June an upper respiratory infection landed us in the ER with Croup. Lydia's overnight oxygen saturations were low and her breathing was labored with retractions. They gave her a steroid shot that lasted for 72 hours and she was able to sleep and recover somewhat. (June 2021)
To have a mask fitting and a sleep study you need a negative COVID test.
Here is Lydia plugging her nose after the COVID test. Big shot!
The mask fitting went extremely well and Lydia claims that her mask will strengthen her superpowers overnight so that she will be stronger and more incredible during the day. Sounds good to me!
Sleep studies are ridiculous, necessary and also super interesting and nerdy if you are me. The RT hooks boatloads of sensors up to Lydia from her legs to her head. This was her second one, she had her first before the trach was removed. This go around Lydia helped prep and apply the sensors. She was a great sport and never got upset. She also had some serious conversations about apps and games with the RT.
Obstructive Sleep Apnea:
1 breathing event per hour for a child = normal
1-5 breathing events per hour for a child = mild
5-10 breathing events per hour for a child = moderate
10 or more breathing events per hour for a child = severe
Lydia had until 1am to prove whether or not she would qualify for CPAP with 10 or greater breathing events in one hour. If they had to put CPAP on during the sleep study, she qualifies. If they didn't have to put CPAP on during the sleep study, she doesn't qualify. I finally fell asleep around 10:40 thinking I had until 1am if there was going to be commotion. Nope. My sweet girl had 45 respiratory events in hour hour by 11pm so they put the CPAP mask on over all those sensors, wires and tape. Her sleep is not safe...has not been safe... without the CPAP.
After approximately 2 minutes of CPAP, Lydia was back to sleeping and was sleeping very soundly and entered her first REM cycle of the night. Her best REM lasted over an hour after CPAP and typically they only last 5 to 15 minutes. She started dreaming after her mask was on too. Lydia may have had her best sleep of the last 6 months at her sleep study. Poor girl.
CPAP also cut her respirations in half and normalized her CO2 levels that were slightly elevated. CPAP is not at all what we predicted, asked for, or wanted but CPAP is going to change Lydia's life. She will sleep and be well rested, she will grow, be healthier, have more energy, and it could impact her behavior and learning. So as much as we didn't want another thing...we are grateful we knew she needed help and we are blessed to have wonderful providers who care for Lydia.
Heading home on the 4th of July at 6am. Lydia wanted McDonald's for breakfast. She of course got what she asked for. She then proceeded to stay up until 10pm to celebrate America! Also, she received 4 things from the toy box when we arrived for the sleep study and she received eight stickers and a Crayola Scrubbie from the RT.
If you've ever donated toys or art supplies to CMH. Thank you! They brighten a kids day at 6am on the 4th of July when they are leaving their sleep study - the sleep study they think is normal, the sleep study they now pretend play with their dolls, the sleep study your kid may never have but mine has had two and will have more. Keep donating if you are able, these kids deserve to smile.
On July 5th the orders are placed for a CPAP machine. On July 6th I touch base with the doctor, he says to start nagging the DME provider the next day if we don't hear something. There is a major CPAP machine recall going on and he doesn't want Lydia to get lost in that shuffle. I call on July 7th and they need a special waiver because the manufacturer says you need to be 60 lbs to use the machine and Lydia is only 36 lbs. Long story short, Lydia received her CPAP machine today, July 14th.
I put Lydia's CPAP mask on, turned the machine on and read her two chapters of Junie B. Jones. At 8:15 it was lights out, music on, and she was asleep in 3 minutes. I usually takes 30-60 minutes! No incessant chatter, no signing, no restless legs, no alphabet sign language, no drinks, no bathroom. Just Sleep. By 9:15 she had woken up once and ripped the mask off and it takes a lot of 6 year old work to rip that mask off. She's good. I negotiated with her and finally got it back on. We start hour two.
Around 10:00 she woke up and the mask came off again. Not simply came off, she swatted and pulled to get it loose. We negotiated again and it went back on and she was asleep in seconds. We start hour three.
I fell asleep in her bed laying next to her, thinking it may be better when she wakes to not be startled by the mask if I am there. Nah. She is determined. Mask came off for good at 11:15 and I think that was a pretty successful first attempt. I know it's only night one but she has had more peaceful sleep in the last hour than she has had in months. String a few hours or nights like this together and we'll all have fewer circles and bags under our eyes. She's practicing again this morning.
This sign hung from her crib in the hospital for 3 months after she was born. I have it packed away somewhere. The time to retrieve it may be now.
