Wrenn's doctor finally had a chance to sit down and talk to St. Louis about our situation. And here is what they said.
They are waiting for Wrenn to declare herself. Dr. Sweet has seen babies get worse over time and some get better. They can't give her a new lung until she is in NEED of one. What they can't tell us is how long we might have to wait to find out how her particular mutation progresses.
What they did say was that some babies who were worse off than Wrenn got better. Those babies were vented and came off the ventilator and could be weaned down on the oxygen and liters. This information amazed me because if you are born with limited surfactant protein, I can't imagine growing it or getting it later on in life. The doctor had a hard time explaining this to me but in a nutshell, as she grows she uses less of the surfactant protein and more of her lung capacity. So asking you all to pray that Wrenn's lungs heal or better distribute surfactant protein is NO joke. There is a possibility that she won't need a lung transplant ever, IF she can get weaned off the oxygen and liters. Right now she is still at the highest levels but stable, which is great!
For the time being, we are not going to send her to St. Louis to be evaluated because she would still have to be shipped back to either Orlando or VA. It's risky and could hurt her in the long run. She is NOT on the list for a transplant until she declares needing one.
We have chosen to keep her in Orlando for now. Within the next two months she might be transferred across the street to Arnold Palmer Children's hospital where she will continue to grow and receive therapy to keep her developmentally up to date.
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The hard part is that she is still in the hospital on HIGH levels of oxygen and on 8 liters. The only way she could come home is to be trached and vented and would require 24 hour care in our home by a nurse. NOT an option for us right now. She needs to get down on the liters. (We need to pray for her to go from 8 to 1 or zero!) Time will tell if she is the baby that will improve or decline.
Please continue to pray for her condition to improve. I really picture her leaving the hospital in her car seat with her lungs intact. I would love for all the nurses and doctors to witness a miracle and I totally believe that with this disease, anything is possible!
Today she looked right at me for several seconds and then smiled, twice... it was the best day ever to see that.. I took it as a sign that all will be okay... it's been a while since I've been able to say that. For now, I am going to just believe.
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4 comments:
It's all good... Our prayers are with you and they surround Wrenn. We must all enjoy each of those precious moments and know we are being held, that all is well, that we will be given the strength to not only endure... but to thrive!
Debbie
Praying for Wrenn in Delaware!
I'm praying daily. She is strong. And 2nd children are always headstrong anyway. She'll do it just to prove she can. 2nd born children who are girls are the most strongwilled! Remember that we prayed for her to be a fighter when she is 13 and you are in a mother daughter blow-out.
Julie (safe start)
Oh Niki, my thoughts and prayers are with all of you during this continued difficult time. But, good to hear some potential positive news and will be praying for that direction! Love you! Thank you for your updates! She is absolutely beautiful! Wish I could give you a great big in-person (((HUG)))
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