Friday, June 3, 2016


In the last week Avelyn has made stunning progress from a respiratory standpoint. She has gone from 20 liters of flow at 75% O2 via vapotherm to just 1 liter via nasal cannula. She has maintained stable blood gases despite the intensive weans meaning her gas exchange is steadily improving. She isn't showing signs of labored breathing and looks fairly comfortable in her ventilation. It's still up in the air if she'll need oxygen for home use. No one really knows how or at what rate her lungs will recover after four months of intubation, but for now she's doing well. 
Her kidneys still aren't showing much signs of improvement but they aren't getting worse either. She is responding well to peritoneal dialysis and for that we are blessed. She has a long way to go before she reaches the point that she is ready for the cycler, which is a machine that performs the dialysis. It requires her to be on double her current volume of dialysate, so she'll have to work up to that. It'll take weeks, if not a month for her to get to that point. In the mean time she'll need to remain in the PCICU on manual dialysis. 
Another aspect keeping her here in the PCICU is her need to detox off of a sedative called precedex. She's been on a very high dose of this medication ever since she was intubated at the end of January for endocarditis. When the dose is weaned her body reacts horribly. One of the attendings here told us that the drug has never been studied in children for chronic use. She's likely not the only one who's reacted this way, but given the rarity of circumstance, it's not something the providers have much experience with. Saying that, she'll need to stay in the PCICU until she can be weaned from this drug and that will take a couple months at best. And while I hate that she'll be in the hospital all summer, this drug  affects her that drastically. It's safer to wean it slow, and after nearly 6 months here, a couple more seems like a drop in the bucket.
Also on the horizon- Avelyn still needs a heart cath soon to balloon up her pulmonary arteries. The PAs are small and pumping blood into such small arteries puts a lot of strain on the right side of the heart. A recent echo showed positive signs that her heart is currently tolerating this extra strain alright, but it's not something that should brew. However she cannot go to the cath lab until she is solidly stable and her kidneys have "declared" themselves (meaning she'll regain function or not). 
So in short, we are blessed beyond measure but in this for the long haul. Avelyn is recovering and we are getting to snuggle her close. The feeling of holding and rocking my baby after longing so desperately to do so for so long is indescribable. I was afraid she would have an adverse reaction to human contact after lying in bed with mainly negative touch associations from getting the care she needed. However she seems to have missed it. I have cried with joy too many times to count in the last week due to knowing she accepts and likes being loved on. I was truly terrified she would be revolted.
She is only just rediscovering her voice, but she is learning that even the faintest whimpers will result in snuggle time. Those faint whimpers, while so sad and heart breaking, are music to my ears. We went months without hearing her voice. It was a possibility that such a long intubation may have paralyzed her vocal cords. But it didn't. Each day she regains more function of her vocal cords and rediscovers her ability to make sound. It's so special to watch her figure it out. 
In the last couple weeks, we have been more than happy to oblige her every desire after four months of hell. She is rocked and bounced most of the day and it's doing wonders for all of our hearts. 
Thank you all who have prayed and sent us love and support. Our Avelyn is recovering and we could not be more ecstatic or thankful. She still has such a long and uncertain road ahead of her. As I have said before, she'll never be out of the woods but it looks like we'll get her home to the mountains. With that in the forefront of our minds, a couple more months here seems more than doable. 
As usual, much love and best wishes to you guys!








  1. Love, love, and more love! Tears of joy & appreciaton for these wonderful moments holding & snuggling our girl. My heart is so full that it just overflows onto my cheeks ❤️😂 Thank you Lord for these blessings and all of those to come 🙏❤️😂

  2. This so so wonderful! We are happy to hear good news for your sweet girl and your wonderful family!

  3. I'm so happy that you're seeing much anticipated progress! It's amazing to see how God has equipped y'all through each step of this journey. He is mighty! Know that you'll continue to be in my prayers.

  4. Grateful for the progress of your sweet baby and praying for more of same.

  5. awesome awesome! & continuing to pray for healing and homecoming!! what a blessing to be able to snuggle and enjoy it!! so happy for you guys!

  6. awesome awesome! & continuing to pray for healing and homecoming!! what a blessing to be able to snuggle and enjoy it!! so happy for you guys!

  7. WOW!!! AWESOME AVIE!!! Keep on fighting little angel. Thoughts and Prayers continues to come to each of you. Miss you all!!