It has been a week since we saw the other surgeon. Today we are heading to Cincinnati for TS clinic to address Bai’s kidneys. I have a few minutes in the car, while Bob drives, to update.

 

Last week we met with the surgeon that Bailynn’s Neurosurgeon recommended. The unicorn doctor as I have been calling him and I have to say, he lived up to his hype. 

He stood quietly and waited as we regurgitated Bai’s past years on him.

 We gave him all the bad, the good, and the horrific. We explained our concern and we confided our heartbreak. He now knows Bailynn, not only her, her suffering. 

He gathered his thoughts and spoke softly his concerns and plan. 

He first told us how he doesn’t believe going in through her chest is a good idea at all. She is tiny. There would be extensive damage to her pulmonary and he doesn’t know how she will recover from it – agreed. This freaked us out more than anything, but what are our options?!

  He wants to go from the back again. 
He asked to see the scans we had brought, but was shocked to find they were X-Rays and not CT scans. Of course we questioned why, as Bai’s current surgeon had never required them in the past for back surgery.

 This guy explained how he maps out the back and how he locates the strongest bone and best positioning for hardware. He doesn’t make a single incision without a clear plan prior to surgery. (INSERT “Home Alone” Kevin Mcallister slap face here!! – WHAT!?) He goes on to tell us how plastic surgery will then place tissue and muscle on top of all the hardware he places and help with closing the incision on her back (I could die at this point – he cares this much about the after math and current state of her skin and back – my heart wells, but has often heard things that are too good to be true. Is this that instant?).

 He goes on to tell us how her scoliosis was never addressed correctly up to her neck. She hunches as we say. She rolls her shoulders forward and keeps her chin tucked – a lot. He wants to place the hardware all the way into her neck to assure that he rods cannot be pulled off again, as they were at a high pressure point for her curvature before. (I feel sick at this point and my sick feeling only gets worse when we go see the scans with him).

 He addresses her rib cage bowing and says he can pull that back too (WHAT!?). 

  He pulls up her scan…..this is where it takes every piece of me to not cry – angry cry. He sees the X-Rays and agrees that the progress has to be dealt with quickly, then he pulls up and old CT scan from Riley, in 2015, of her lungs, when her rods were still placed. He stops. He goes back and forth between frames. He stands up and looks at us. He points to the screen. 

  There were 4 large screws a-fixing her hardware to the top portion of her spine – one of those screws was millimeters from puncturing her aorta. It appears to have punctured the outer membrane of it. As a mother, my anger inside my brain pops – as I am sure Bob’s did too. How. What. We have dealt with these dumb things so much. They have brought the greatest suffering to Bailynn. The most significant financial strain for our family and there, in a single frame, they were a breath from killing her. AHHHHHHHHHH!!!

  
We then went for a round of CT scans for him to evaluate her structor and how/where he would place new hardware. We had issues with one scan, that requires contrast dye, we are addressing the issues today with her Nephrologist. Bai is not supposed to have contrast dyes during scans, cause they are incredibly hard for the kidneys to dispel.

 This surgeon however wants to look at the possible damage done to her aorta and this is the only way. We have an appointment set to see Plastic Surgery – we also have to see her Cardiologist and GI for the ok to proceed. 

  We have a ton of appointments over the next few weeks. Pray as we go forward that every step goes smoothly and that every approval Bai needs – she gets!

 

So to sum it up! This surgeon says we can go from the back again. He says he can bury hardware below muscle, put it higher so we don’t have upper spine issues again  and have a plastic surgeon involved for her skin. If he can pull this off, he’s more than magic. He is a miracle. He is Bailynn’s UNICORN!!!

 God always seems to place the right person in the right place for Bailynn. I keep telling myself also at the right time, but I so wish we’d met this guy a few surgeries ago – a bunch of heart ache ago. It must be this is the time that we were suppose to meet. This is the moment we fix her back forevermore.

Forevermore 

For Her,
Bobbi

2 thoughts on “Unicorn

  1. We are praying for you all!!! My heart aches with you and I’m so sorry for all you’ve been through and continue to go through. I admire you so much! We love you guys! Keep us updated.
    Emily for us all

    Like

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