Well as I imagined our Fisher girl has Moderate-Severe Sleep Apnea. More on the severe side. The total number of “episodes” are listed below:
Obstructive Apnea: 26
Mixed Apnea: 8
Central Apnea: 67
Apnea Totals: 101
Total Apneas/ Hypopneas: 186
Apnea/ Hypopnea Index: 33.0
So what does all of this mean…
Obstructive Sleep Apnea occurs when the muscles relax causing soft tissue in the back of the throat to collapse and block the upper airway. (Basically there’s an obstruction where she can’t breathe)
Central Sleep Apnea occurs because your brain doesn’t send proper signals to the muscles that control your breathing.
Mixed Sleep Apnea is a combination of obstructive and central sleep apnea.
Hypopnea is abnormally slow or shallow breathing.
Hypopnea/Apnea Index is an index used to indicate the severity of sleep apnea. It is represented by the number of apnea and hypopnea events per hour of sleep. Normal would be less than 5 events per hour. Mild is 5-14 events per hour. Moderate is 15-29 events per hour. Severe is 30 or more events per hour.
Since Fisher’s Index was 33, she’s considered severe. So what do we do now you ask?
We are scheduled for surgery. They will do a sleep endoscopy on October 14th, and determine what they need to do. Dr. Virgin said most likely he will have to remove tonsils and adenoids. He will check to see if he will need to correct the laryngomalacia, which he would do while she’s under. He will put tubes in her ears since she has fluid in then since January. We haven’t had many infections, but the fluid just is hanging out.
She will have to stay in the PICU for a little while to be monitored on recovery. Once she is healed, we will do another sleep study. We will want both obstructive and central apnea’s to drop down drastically. If the central sleep apnea number doesn’t come down like he would like, we will have to have another conversation about her possibly having another sleep disorder.
We will also retest her hearing, since she has failed both hearing screenings. We are praying she passes the hearing test this time around, if not, we will have to address the hearing loss issue and possibly talk hearing aids! (It’s a good thing I work for an Audiologists office and know my stuff)
Bobby bought us all amazing t-shirts from “Littlest Warrior”. He got Fisher one that said “not cookie cutter” 😍 it’s absolutely perfect for our special girl.
Fisher went to the ophthalmologist for her drifting eyes. She still has “Intermittent Exotropia”. Basically, the muscles in her eyes are too weak and they will drift off. We are going to have to patch one eye for 2 hours each day, alternating eyes. We will continue this for 4 months and then reevaluate. If the doctor isn’t seeing the results he would like, we will either get more aggressive with the patching, or discuss surgery.
Unfortunately, Fisher HATES the eye patch. She picked and pulled it off, every time we put it on 😂 we will have to purchase some mittens soon in order to keep her from picking it off everyday.
On a positive note, Fisher learned to clap! She loves to clap, even if she doesn’t it very proper 😂
**Excuse my mom voice**
Lasty, on our update for Fish, we tried to reintroduce oatmeal during feeding therapy and about 3 hours after eating it, she started throwing up… a lot. It lasted for about 2 hours until everything was cleared from her system, then she was fine. I spoke with GI at our appointment Monday, and she is referring us to an Allergist to discuss the possibility of Fisher having FPIES. 😩 hopefully not, but I guess we will wait and see.
Fisher is currently trying to push through so nasty seasonal allergies and a possible ear infection. She’s a tough little cookie and is doing amazing handling all of the doctors appointments and therapies.
Please continue to pray for her and our family as we learn to live with this new normal. Some days are harder than others, but we stay positive and know everything we’re doing is worth it for our girl! We appreciate all of the love, support, and prayers!