After our good news about Avery's swallow study, I hadn't even dared to get my hopes up about any other tests. The results of her swallow study were, to me, the news of the year! I didn't think we could hear anything better. I was wrong.
In order to fully appreciate the news we received today, you need the back story.
In January 2016, Avery had her sleep study. The results showed that Avery had moderate-severe central sleep apnea, based on her AHI (or "apnea events per hour" in lay men's terms) of 13. We were advised to start her on a ventilator at night for respiratory support for "6 months or so" when she would likely outgrow it. I was upset, but saw it as a very short-term treatment.
In September of 2016, after a chiari decompression and months on the ventilator, we repeated the sleep study. The results gutted me. Avery's AHI (events per hour) had gone from 13 to 22! No one could explain to me how or why we were going BACKWARDS. We discussed degenerative brain diseases, but nothing conclusive could be found. We were just left to wonder and told not to get our hopes up about getting off the vent or ever removing the trach. They advised that she "still might" outgrow the apnea, but if it persisted, she would have a trach and ventilator for the rest of her life.
On Sunday night, we had our 3rd sleep study, just to check on the apnea and to change our vent settings as needed. I didn't sleep all night, listening to her occasional pauses, certain that the results would be similar to the last sleep study. I didn't even feel sad or disappointed anymore. I prayed that God would heal her little brain, but added that if He didn't, I trusted Him. I trusted His plan for Avery's life.
I realized my heart no longer depended on good news to be happy. I thought of all the sadness and soul-crushing and thought of how there had never been news that we hadn't finally grown accustomed to. God had never lead us to a bridge that He hadn't crossed with us. Even when I felt like I was being dragged across, kicking and screaming. LOL.
Today, Avery's pulmonogist called and said the words I hadn't even dreamed about anymore.
"So, it looks like Avery's apnea has improved considerably and we feel that she can come off the vent for good."
Avery still has some mild central sleep apnea that she may continue to outgrow, but her AHI has reduced to 4. FOUR, people, FOUR!
I packed up her ventilator today. I've never disassembled something so quickly in my life. Haha! I thought we might carry that ventilator around with us for the rest of Avery's time here on earth, but that's just not going to be the case.
And. I. Am. So. Freaking. Stoked. About. It.
You can tell, obviously, based on my excessive punctuation in that last sentence. 😂
I'm still in a bit of shock. I can't believe the progress she's made and how good God has been to us. It seems as though, whenever I can say with all of my heart that He is still good, no matter what my circumstances say, my circumstances CHANGE for the better.
So, friends, with all my heart, I must tell you that He is GOOD and He only, ever does what is right and true.
And on that note, Lord, will you help Avery learn to walk soon? Hehe.
P.S. Farewell, Ventilator, I am NOT going to miss you.