Thursday 8/29 Natalie Update

Hey Folks,

Just wanted to give a update on Natalie! She has been a super busy little gal so far this week. She came through surgery like a champ and has hit the ground running. Dr. Stone did an amazing job with her procedure. He and his team were able to get it all done in 3 and a half hours versus the 6 hours that was anticipated. He got the growth rod and all of the hardware out safely and without a hitch. He was also able to place her halo securely. As expected, Natalie woke up angry but she was able to calm down when Joanna and I were allowed to go back to post-op. As soon as her procedure was done the doctors hooked her up to 5 lb. weights and gravity started to do it's job. Once we got up to the room the anesthesia started to wear off and she slept comfortably in her bed.

Tuesday morning she woke up and got to work. Her team came by one by one and started setting goals. She has an Ortho Team, a Physical Therapist, an Occupational Therapist, A Hospital School Teacher, 2 nurses per shift, and many other great folks and departments that check in on her throughout the day. Since she is the first kid at UNC to have this procedure Joanna and I are the "guinea pig parents". We get to teach the nursing staff how all of her equipment practically operates and we also get the opportunity to give input on how we can all make the process and equipment better for the next round of kids. The nursing staff and doctors have been given instructions on the concept of everything but none of them had ever seen the equipment or know how it works in person. It's kind of fun telling doctors and nurses how to do things haha. It's also a lot to take in and we are learning new things every day.

As far as Natalie goes, she is up and moving around all day every day. Her first day out of bed she stayed in her wheelchair (which his it's own weight system attached) for 5 hours. She also walked the short end of the hallway and back. The second day she walked around the entire floor several times with little to no hesitation and she stayed in her chair for several hours. Dr. Stone even came by her room and told her that she is able to go anywhere on the hospital campus while she is staying here whenever she wants to in 1 hour increments. She can go outside, we can wheel her around the hospital or she can walk as much as she is able. This is a huge deal for her because it helps give her a sense of normalcy and will allow her to not get in the "hospital funk" as quickly. Today she even went to a science class with a few of the other kids where she made a jellyfish puppet and got to learn to identify a lot of sea animals. Our biggest problem now is getting her to slow down and take breaks. She's a fireball of a patient. She has no quit and we love that about her.

From here on out, every other day Dr. Stone will be adding 2 pounds of weight to her halo system until they reach 20 pounds. Then they'll stop at 20 and let the weights start stretching her back out. As you can imagine adding 20 pounds to a girl that is only 33 pounds will be pretty extreme. Her bed, her wheelchair, and her walker have a weight system that essentially pulls her head upward whenever she is attached (which is all the time). We've entered the phase where Natalie will become frustrated. As the weights get heavier it will be harder for her to maneuver freely and the more constricted she'll become. So pray that she'll have the patience and stamina to stay positive and to fully understand that she has to keep these weights on indefinitely.

So that's been our week so far. We'll be here chasing Natalie around the hospital until the next step begins. We still don't know how long the process will take but at least it has started. We're so thankful for everyone here at the hospital and for everyone back in Elkin, Raleigh, Wilmington, Florida, and all over the country and world. Your thoughts and your prayers have truly been felt. All I can continually say is that your love for her has been overwhelming in the best sort of way. I'll send out plenty of pictures and updates as they come via Facebook and i'll update the blog too.

For those that have asked, Our Address here is:

101 Manning Drive
Room 7CH04
Chapel Hill, NC 27514

Big Day for Natalie 8/26/19

Photo by our dear friend Amaris (Amarisphoto.com)

Tomorrow is the “big day” for Natalie. I’ll be posting updates as she hits specific milestones or has clear needs coming up in recovery. This way everyone can know precisely what is going on and will know how to focus prayer, thoughts, and encouragement. So I’ll start tonight with a lengthier post about what she has coming up tomorrow and we’ll go from there!

Her procedure is scheduled for 2:00PM. We’ll arrive at UNC around 12:30 and wait as her operating team preps for all of the intricacies of the surgery. There is a chance they’ll move the time but we’ll update if needed. The procedure will happen in 3 stages. The stages are:

1) Removing the existing mobile part of the growth rod- This is the biggest part of the rod that runs the length of her back. It’s the part on her back that most people notice protruding from the top. That large “hump” at the top is actually a metal rod and not her back at all. There will be an entry point at the top of her back for its removal.

Pray that Dr. Stone and his team will work swiftly but precisely to get all of this hardware out without introducing any bacteria, virus, etc. This area in the past has been prone to infection because of the positioning of the incisions. Pray that infections, etc. can be avoided.

2) Removing the stationary hardware- This is the tricky part. The stationary hardware is what is actually connected to her spine and surrounding areas. As you can imagine there are plenty of areas in which the surgeon will need to have unimaginable steadiness to make sure he doesn’t damage anything while removing these parts.

Pray that the team can remove all of the hardware (screws, wire, etc.) safely without damaging any nerves or discs or bones. There will be an access point at the top and bottom of her back to remove these components.

3) Positioning and connecting her Halo- While still under the general anesthesia the team will affix 8 screws around her head into her skull. They are tight and will obviously be quite an adjustment for Natalie. She knows that it is screwed in but does not fully know what all this entails.

Pray that Natalie will understand that the pain associated with the halo will subside as she recovers and pray that she will understand and accept that she has to wear this device for the duration of her time at the hospital and potentially after she is released.

Natalie is a funny but ornery patient. During Pre-Op she is given a medication that makes her very “happy”. Typically she spends this time laughing at us, pointing at things that aren’t actually there, and talking to anyone that happens to walk by her room. She becomes “Social Natalie” and has a great time. However, in Post-Op, she ALWAYS wakes up angry and tries to get out of bed. Every. Single. Time. Although it’s pretty comical to see her get riled up it’s very important that she stays as calm as possible after the surgery. So if you will, please pray that her stubbornness will hold off until she at least gets to her room. Her strong will serves her well most of the time but tomorrow she’ll need to remain peaceful and still.

I think that about sums up tomorrow’s activities. It will take anywhere from 6 to 8 hours to get everything done in surgery but we will give an update as soon as possible after she wakes up. So be on the lookout! 

We've gone through surgeries with Natalie but nothing of this magnitude. This is new for us so we appreciate you all coming along with us. We are so thankful for everyone on this journey. Joanna and I truly can’t articulate how much it means. We love you all.