Wednesday, July 13, 2016

Still Praying for Miracles

Our sweet baby has come so very far. She's overcome so many seemingly insurmountable odds but yet she continues to face such hardship. Hardship that may inevitably take her from us well before her time. 
In the last few weeks she has made great progress in all areas but renal recovery. She has been completely weaned off Ativan and has started her precedex wean. The precedex will take time to come off of- likely a couple more months. She is currently being weaned daily and handling that ok, but it's probable that the weans may need to be spaced further out as she gets deeper into the process. The constant state of withdrawal has kept her feeling not so great but she looks better than we've ever seen her. She's more interactive and more engaging than ever before. Her heart rate and temperature stay fairly elevated though and she's often pretty irritable. It sucks but that's just part of the weaning process. After the precedex comes off she'll need to be weaned from the methadone (which she needed to come off of her opiate drips) and the clonidine (which she is on to come off of the precedex and Ativan). Yet those weans are so far in the future it's not much of a concern right now. 
The biggest concerns center around Avelyn's kidneys. I am absolutely terrified when it comes to  her kidneys. The last renal ultrasound showed that they have shrunken and have scar tissue forming. Granted at that time we were reassured that there is still time, but it's been weeks and we haven't seen any improvement. We still have hope and are praying fervently for her kidneys to turn a corner and start working again but it doesn't look good. The nephrologist today said its looking less and less likely that her kidneys will make a come back. Plus chronic renal failure is usually a progressive disease. So, best case scenario- her kidneys come back and function at a quality of life sustaining rate, we'll still have worries of progressive worsening over the years. However, we've been told Avie's case is so unique that there's a very (very) small possibly that she will not have this progressive worsening. 
It's not much, but I believe in miracles.
How could I not? I am currently cradling the most beautiful miracle I've ever witnessed in my arms as I type this out.
However, I am also a realist and know that miracles aren't often gifted.
A kiddo without CHD and with Avelyn's renal function (and no recovery) would need a kidney transplant. We don't know if Avelyn is a transplant canidate. While her heart function is currently not too bad considering all she has been through, she still has very real and serious cardiac issues. Her pulmonary arteries are quite small and will need serial ballooning and stenting as she grows. Each heart cath procedure will require contrast which is hard on the kidneys. She'll also require pulmonary conduit replacement procedures as she grows and likely tricuspid valve revisions. Heart lung bypass runs are hard on the kidneys too. 
What does this mean for Avelyn?
Honestly, we don't yet know. 
We don't know if she'll be a kidney transplant canidate. We just don't know. If she is, she'll have to grow another year or longer before she's big enough to receive the kidney (they don't transplant child sized kidneys, only adults sized). 
This isn't your average child growing for a year. Poor kidney function surpresses growth and development. And so does CHD. She'll be more prone to illness and at greater risk in general. 
Next week we'll have a care conference to discuss all of this in greater detail. I have a feeling the answers we will receive will be along the lines of "we'll have to wait and see" and "we don't yet know".
So much is still up in the air. Our daughter's very life is up in the air. Her future. Her health. Her happiness. Our little family of three. None of it is guaranteed. None of it. 
I think a lot about that. It's hard not to. 
Taking each day as it comes is easier said than done, but honestly it's all we can do right now.  
Please pray God sees fit to grant our precious one yet another miracle. Please pray for renal recovery, quality of life and healing. She's fought so hard. We just want to see her grow and be happy
As ever, she's our beautiful wonder girl and she continues to give her all.