Natalie

 

Hey Family and Friends,

I wanted to share an update on Natalie. Last Thursday 8/6/20 we met with Dr. Stone (her ortho surgeon) to check her weight and to see how her spine looked. Basically, after several month in the halo nothing has improved. Her weight dropped a bit and her spinal curves haven't gotten any better. 

To back up a bit i'll explain the significance of her weight drop. Natalie has always been on the negative percentile on traditional size charts. She's always been small and because of her muscle tone issues it keeps her small. She'll never be a big kid. However, in order for any further surgery to happen and any fusion hardware to be placed in her back she needs to gain enough weight so that the instrumentation can be covered. In other words, there isn't enough real estate on her back for the surgeons to cover the hardware. That's why the last fusion had to come out. It wasn't being covered and kept coming through her skin. 

So, since her last surgery we've been doing feeding therapy, night feeds via mic-key feeding tube, and giving her food that might help her gain some bulk so she could have surgery. But since she has had the halo on the second time...she's lost weight. Most of this is due to the "robbing Peter to pay Paul" effect of her night feeds keeping her from eating normally during the day. She isn't eating enough to GAIN by daily oral calorie feeds and the night feeds are simply giving her "extra" calories and keeping her from eating during the day...because she's full. She loves to eat and can eat plenty to keep herself healthy but she just can't eat enough to gain excess weight. Those of you with children, try to imagine trying to get your child to gain 5-10 pounds. It's almost impossible because of their metabolisms. Now imagine trying to get a kid like Nat to gain 5-10 pounds. 

When we met with Dr. Stone last Thursday we were faced with the conclusion that there wouldn't be another surgery for Natalie. If he were to perform surgery again he wouldn't be able to close the incisions because of her size. Essentially putting her in the "inoperable" category. The upcoming surgery (Vertebral Column Resection) that was going to happen if she gained weight already had significant dangers to it. They say with a typical scoliosis/kyphosis curvature there is an average complication rate of 69.2% with the procedure. Meaning even in the best circumstances there would be a large chance that she would have come out of the surgery paralyzed or potentially not at all. With Natalie's complications, the end result would not be good for sure. What this means is that we're officially out of surgical options. We're officially off the patient list at UNC Ortho. No more visits, xray's, etc. The last thing they'll do with her is take off her halo in the coming weeks. We're still working with the nutritionists and other doctors to work on a plan to give her some bulk but we're all on the same page knowing it probably won't happen. 

So what does this means for Natalie's long term health? It means what you imagine it means. It means she (and we) will now be living in the reality that her spinal curvature will cause her lungs and heart to struggle. How long will it take to get bad? There is literally no way to tell. She was already in the danger category before her first surgery last year. It could be years or decades or less before it gets life threatening. But we can't see into the future. We have hope that it will be a long time before any complications come but all we can do is hope and wait. 

This obviously is not the outcome we'd hoped for but "it is what it is". We're in a bit of a daze trying to process it all thus the lack of updates and communication with folks asking about her the past few weeks. She is happy through it all. Stubborn as ever and glad to be getting her halo off one last time. This update is heavy and seems hopeless but it doesn't mean we're giving up. It just means that at this point, the door to surgery has been closed. One day as medicine and surgery progresses we hope to have another option. But for now, we don't. We'll search out other future options for sure while still living in the present. So be on the lookout for updates as/if they come. 

Natalie will be starting the 3rd grade on Monday. She can't wait to get back to her school family with Mrs. Garris and Mrs. White and the friends she loves so much. We considered not sending her back due to COVID-19 and her underlying conditions but we've chosen to let her find joy in the midst of the chaos without regret. We've taught her over the years to love God and to love people and we know that as she goes back to school she'll be able to accomplish that.

Please continue to pray for her. Pray that God might be glorified through her and that people might be loved well through her experiences.   

We love you all- Lyle, Joanna, Isaiah, and Natalie.

Another Step...

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 😀