As you know (or maybe don't know), Natalie has had a hard time healing from her spinal fusion surgery. Her skin and the hardware just isn't cooperating. The hardware has come through her skin twice and each time it's been exposed her doctors have removed screws and parts of the rods. Her plastic surgeon has a hard time finding enough good fat on her back to cover the incisions during each surgery. She also still hasn't regained the ability to walk independently farther than a few steps. She'll be turning 9 on May 21st and she is having to crawl like a toddler to get around the house. She does have walkers to use but they are so cumbersome for her to use that she skips the step of using them most days. Additionally, her cervical spine (or neck) strength has not improved and it is causing her to hunch over more than ever. This lack of neck strength has been causing a lot of the hardware issues as it puts unneeded pressure on the skin and hardware. So to say she is struggling is an understatement. She keeps chugging along but, as you can imagine, it's taking a toll on her physically and mentally.
Last night, as we were doing her usual wound care routine, we noticed that another part of her hardware had become exposed. We immediately texted her doctors and told them that we really need to discuss and reevaluate the long term plan. We can't keep "putting a band aid" on the situation. They responded back quickly, set up a time for another surgery on Friday 5/9, and also scheduled a telecall to discuss what the options were. After talking with her doctors they have come up with the following plan. Since the current configuration isn't working; Take all the hardware out, Reattach the infamous halo for a few months, and then evaluate and plan the next steps. Currently the next step plan consists of another procedure called a Vertebral Column Resection or "VCR". This procedure would actually remove entire vertebrae from her spinal column. They'd also move up into the cervical spine and put temporary posture-type rods to help hold her head up as it strengthens. This type of surgery is extremely complicated and carries with it many risk factors. It would involve a neurosurgical team along with her other teams to monitor and complete the procedures.
So tomorrow starts the next step of her journey. She is beyond thrilled at the idea of having her halo back. She always says that she misses it and when we told her about the surgery she actually yelled and pumped her fists and said "Yay, I get my wheelchair back!". So I guess that's one silver lining. This time there won't be much expectation of the halo straightening her spine but it'll moreso be a means of keeping her upright and off of her lungs and heart. It will alleviate much of her pain as well.
As can be expected, we're pretty hearted about the whole situation. Before we talked with Dr. Stone today we called our second opinion Doc down at Shriner's to see what he would do. He said that he would take the hardware out, put the halo back on, and reevaluate. So it was good to hear that his opinion would be exactly what Stone said. But still, it a heavy thing.
Please keep us in your prayers. Pray for rest, for healing, and for clarity.
Also, this stay will be different than the others because of COVID-19. They are only allowing 1 parent to come in to the hospital for the ENTIRE stay*. Which means the parent that comes in with her has to stay...there can't be any trading off or visits from the other parent. So pray for the time that we'll be apart. The plan is for Joanna to go to UNC with Nat since all of her work is done remotely and she can do that in the hospital room as needed. Also, there's nothing like having Momma with you when you're in the hospital. I'll stay with Isaiah to do school, to tend to everyday things, and to just be here with him.
So keep us in your prayers.
*Feel free to Facetime Nat or call her once she feels up to it. She likes to see people. Also, Joanna would never ask for it but since she won't be able to leave the room feel free to send her some Grubhub or Uber Eats (if they'll even let them deliver) because hospital food gets old 😀
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