Sunday, June 12, 2016

Moving Forward

The last week was full of milestones and more are on the horizon. Avelyn's oxygen requirement continues to decrease, although at a much slower rate than last week. Today she went a couple hours without it all together before falling into a deep sleep and dropping her sat's into the low eighties. While it's possible she may continue to need the 10th of a liter that she's currently on for months or  even years, it's also possible that she won't, or may just need it when she's sick. It's still up in the air....(see what I did there). 
The main progress made this week concerns her benzodiazepine, Ativan. She's tolerated it being weaned substantially. By the end of this week she should be off of it, which is huge considering she was on such a hefty dose after four months of intubation and 6 + surgeries. 
For so long she really needed the drugs but each comes at a price. The weans are really hard on her and it's likely to get worse. She's been tachycardic and uncomfortable quite a bit as the Ativan is chipped away. Withdrawals increase her the work of her heart, which increases her oxygen demand and work of breathing-and that's really over simplifying it. 
It's hard to watch her suffer so much from something so seemingly trivial. I can't wait for her to be past withdrawals and off all of these substances. It'll be so wonderful to see her little personality without it tainted by detox, sedatives, and delirium.
Anyway, after the Ativan is weaned away, the plan is to begin to chip away at her Precedex, which is another sedative she needed while intubated. She's on a super high dose of the precedex and it'll take a long time for it to be weaned safely, it could very well take a couple months. Since it's an IV drip- Avelyn can't leave the PCICU until she is weaned off of it. Meaning she'll be here for quite some time. 
She has also made some progress with peritoneal dialysis. She is nearly at her goal fill volume which will allow her to start using a cycler, which is machine that performs the dialysis rather than it being done manually by the nurses. She'll have to be on this machine and tolerating it well to go home. She'll also need to be tolerating not being on continual dialysis like she is now. Getting to that point will likely be another lengthy process with innumerable variables. 
In other news, her little kidneys have yet to declare themselves. The nephrologist we spoke with today suspects we should know if her kidneys will have any recovery in about six months, but the likelihood of that happening lessens with the passing of each month. Please join me in praying for renal recovery and pee. She is peeing some with the help of very strong diuretics but currently the her kidneys are likely working at less than 10% of the capacity that she needs.  
Lastly, as the sedatives are weaned Avie spends more time awake. She's started to try doing actual baby stuff like chew on her fingers and hold her head up. She's got a long way to go and is giving it her all in physical therapy and with the speech therapist (working up to relearning to suck after her long intubation). Hopefully as time goes on our worries will continue to be in terms of her catching up to her peers in development, rather than on the life threatening issues. There are still a lot of dangers she has to surpass and overcome but we know she can do it. As we've heard from multiple sources, she currently the shining light of Vandy's PCICU. 
Much love to you all. I'll update again soon! There's big things on the horizon! 


  1. Way to go Avelyn! Love from Uncle Jacob, Aunt Lauren, Maddie & Caroline! ❤️

  2. Crying happy tears! Avelyn is such a little warrior!! Praying for pee!

  3. My heart soared with yours & Sean's as I saw our precious girl working so hard to hold her little head up and look around to see you 😊❤️ You both have done a wonderful job guarding & guiding Sweet Avie through her many obstacles -my love is always with you and I couldn't be more proud of you both. I'll be thinking of you & praying for you constantly as the wkend approaches. Praying for peace & comfort as well as Gods guidance. Be safe baby girl -please rest when you can and know your Momma adores you. I can't wait to kiss your face again 😘❤️💪