Major Aslan Update
(from Sean, Aslan’s father)
(You may remember that a little over a month ago, Aslan apparently pulled out his trach.)
“Usually this is a moment of panic followed by jumping into high gear to make sure we get it back in immediately. BUT we could not find the stoma (hole) in his throat which means he took it out the night before. We were at a loss. The hole usually heals within 3-4 hours and after that, it means redoing the Tracheostomy surgery. We were mentally/emotionally preparing ourselves to take him down to Hollywood for them to redo his Trach surgery, which is another traumatizing week in the hospital for him.
While he can breathe on his own just fine while he is awake, the concern is that at night he struggles to breathe because of his small airways. This causes severe sleep apnea and loss of oxygen. If he is sick, this is even more concerning. His ENT happened to be at our Children’s Hospital, 15 mins from home. We took him in and they said he needed an “emergency” sleep study, but they did not seem concerned with immediately putting the Trach back in. (His next study was scheduled for December 4).
Miraculously they were able to schedule his Sleep Study that same night.
That was 34 days ago!
We have been anxiously awaiting the sleep study results which we got 2 weeks ago and the interpretation of said results. He’s fine during the day. It’s the nights that cause us anxiety. We put him down, check his breathing, listen, and watch him. He snores (which is why we named him Aslan Michael after his grandfather), then he’ll snort or turn over on his side and repeat the process every so often. We didn’t know if he was uncomfortable or getting enough oxygen. But he seemed like he was breathing pretty consistently.
Yesterday we got the ENT’s interpretation of the sleep study results.
We got the best news we could hope for!!!
2 years ago they put the Trach in because his first sleep study showed him having 67 disruptive apneic episodes per hour where he was not getting enough oxygen. This is off the charts. In January his sleep study results showed he was only having !!!15!!! disruptive apneic episodes per hour which were still obstructing his ability to breath and get enough oxygen. He was still considered to have severe sleep apnea.
His September study results were amazing! He had an average of only 2.8 apneic episodes per hour through the night (which is basically nothing). His oxygen levels never went below 92%! He had 16 episodes all night of “shallow breathing” (hypopnea) but these are not concerning and his oxygen levels stayed up.
He will never need his Trach ever again!!!!
This is absolutely life changing for him and for us. For those who want additional information on Aslan’s overall progress. He is eating between 1,000-1,400 calories per day. Each time we feed him it still feels like a major victory. He eats puréed food by mouth and by G-Tube. He will probably have the feeding port in his stomach for a couple more years(?). He does not eat solid foods, except eggs. Every day we put soft foods in front of him to get him to eat. He has major food aversions. He’s getting feeding therapy at his special-needs daycare as well.
It’s a long road. HE IS TALKING! We felt he was severely behind but even last week he started saying several words very clearly that he had previously struggled with. We believe he can catch up!! He is even sequencing words together like, “I want eggs”. He says ‘hallelujah, Bubba, Momma, Dada, Sissy, take it, oops, naked, stinky,’ etc. very clearly!
He’s getting a lot of attention in the special-needs daycare, where he has been now for several months. He gets therapy every day. Speech therapy, Feeding therapy, Occupational therapy, Physical therapy, Play therapy, Developmental therapy, and therapy for the deaf (b/c of his mild hearing loss). There is still much to do for him, surgeries down the road for his throat scarring, a jaw distraction (to extend the jaw) when he’s older for cosmetic and quality of life reasons, and possibly cosmetic plastic surgery. We shall see.
We covet your prayers for his continued development, physical growth, speech, eyes, hearing, jaw, etc!
By the way, if you haven’t heard…. We’re expecting our fourth child!”
(From Mike and Debbie—you cannot know how much your prayers and concern have meant to us and to our family! We are so grateful for you, New Life! You are God’s grace to us over and over again. Thank you so much!)
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