Back to the Drawing Board

Monday 10/28/19 Natalie Update:

Two weeks ago Natalie and I went to UNC for x-rays to check the progress of her halo traction therapy. There were minor corrections in her curvature but nothing that made her doctors super excited. Since there was such little progress they decided to give it two weeks before checking again to see if more stretching would occur during that time. So we waited the two weeks and we were able to have a week at home without having to ride back to the hospital or go to football practice (which was nice). It was pretty clear that Natalie’s lengthening progress was slowing down a bit so we decided that both Joanna and I should be at this appointment this past week in case her doctors wanted to discuss further plans or adjustments. So we checked the kids out of school, hit the road to Chapel Hill, and made an afternoon out of it.

As always, we rolled into the Ambulatory building parking lot looking like the Beverly Hillbillies with our trailer full of medical equipment, did the usual rigmarole with the x-ray teachs, and waited around for a report. Quickly, Dr. Stone came in and explained that in his opinion the halo was no longer working and that we needed to proceed with another surgery on November 5^th (yes, next Tuesday). He had already decided and had it scheduled. He proposed that Natalie needs a permanent posterior thoracic/lumbar osteotomy and fusion. There is a longer official name for the procedure but essentially it is; going into the back of her spine and manipulating some of her bones around (via osteotomy), straightening things up as much as possible and permanently attaching her thoracic spine and part of her lumbar spine in place (fusion). The way her back and body functions after this surgery is the way it will be forever. After this procedure is done there would be no more operations for Natalie. Literally the last one for her back at least. As we supposed, Dr. Stone couldn’t give us a clear idea of how much correction could be made during this procedure but rather he gave us an honest but disheartening answer of “it won’t be worse”. He went over why he thought this was the best next step and he told us that there were “no other options” that would be appropriate. He rightly communicated that without a solution she would eventually “expire” from cardio-pulmonary dysfunction over time. He said growth rods or any other distraction-based options wouldn’t be a good idea because she was too small and that they wouldn’t ultimately work due to her Arthrogrypotic posturing (meaning her bone/joint stiffness, curvature, and positioning...we can discuss this another day). He said that there were other techniques out there like tethering (VBT) but the colleagues he has advising him on Natalie would not recommend any of these techniques at this time.

So, needless to say, we were devastated. Once again, we have another situation where her team is saying, “we’re out of options”. This procedure would be significantly impactful to Natalie’s overall growth and well-being for the rest of her life. Because of the thoracic fusion a portion of her torso would inevitably be stunted. The overall impact of this stunting is yet to be seen. She could possibly keep her current trunk rotation since most torso rotation comes from the cervical and lumbar region of the spine but that rotation could also be stunted. Also, most likely she would still have a significant curvature of scoliosis and kyphosis and her mobility would be limited similar to what it already was pre-halo. I asked hypothetically if technology advances would this surgery have the potential of reversal if a newer procedure were invented? The answer was “no”. So it’s truly permanent. Dr. Stone was 100% behind us on looking for as many second opinions as we needed which gives us confidence in him all the more. I think that’s what all doctors should recommend. At first we agreed with him that this next procedure was inevitable and since we weren’t medical experts we would take his opinion and get the surgery on the books. So we signed the waivers, got the surgery soap, and we got it on the schedule. But we didn’t feel right about it. We talked all the way home and then just sat in shock, silence, and exhaustion for a few days. We just felt that we weren’t ready to give up hope just yet.

At the end of the day Joanna and I are both realists when it comes to life and Natalie. But, we both have a pretty large dose of idealism in our DNA. We like to dream. We know this permanent surgery will more than likely be the only option for Natalie and we can live with that BUT, what we can’t live with is not seeking out people to dream with us for a while. We need to make sure there isn’t something else out there. So we’re starting over for a season. We’re seeking out doctors to look at Natalie holistically and make recommendations based on several aspects of her livelihood and not just survival. We want people to take into account the impact of a preadolescent fusion and how a permanent solution on an 8 year old might be too hasty. We know that the option given by UNC will Lord willingly keep her alive BUT we hope for more than mere survival. We are hoping to find a doctor that can help allow her to grow as much as she can and to physically become the young woman that she was always meant to be. We want her to look back on her childhood and know that we fought well for her. If her mobility is limited then so be it. If she can’t run like other kids then we accept that reality. We want Our Natalie to be exactly who she is meant to be. As we decide on her next step I look back on all the times doctors have told us that there were “no other options”. Most of those times, they were wrong. Before birth we were told that the only options for Natalie after birth were pretty dire…they were wrong. While in the NICU they said she’d only be able to eat from a feeding tube…they were wrong. They told us that she might not walk…they were wrong. They told us a growth rod was the only option for her back…they were wrong. They told us she’d only thrive in a separated classroom for intellectually disabled children…they were wrong. Just last year we were told that Natalie would never get a High School Diploma and I can’t wait for her to prove them wrong. Dr. Stone is probably right about this final surgery but I have to hold onto a glimmer of hope that he might be wrong. Once we explore as much as we can then we’ll be reasonable and do what needs to be done. But until then, we’re gonna keep dreaming.

So we’re currently scheduling visits this week. We talked with the Paley Institute in West Palm Beach, Florida today and they specialize in cases like Natalie. The Paley Institute is not covered by her insurance but they will allow us to self pay for the initial visit to see if other options are out there. We have no idea what timeframe as to when they’ll be able to see her but we hope it will be sooner than later. We’ve also scheduled an appointment with the Shriners' Hospitals who work with experienced ortho specialists that can weigh in. We met an amazingly kind man here in town while eating at “Harry’s Place” that got the ball rolling for us with the Elkin Shriners. We’re meeting with him tomorrow afternoon to talk about visit options. After that, we’ll regroup and see what else is available. We know this next little bit will be exhausting and to be quite honest we’re already exhausted but, I think in the end it’ll be worth it. So please keep us in your thoughts and prayers over the next little bit. We’re heading into uncharted territory so any reasonable tips or guidance in these areas will be so greatly appreciated. We’ll get there eventually.

Thanks again for all your kindness through this process.

Home for now! (Phase 2)

Welp, we made it home after a month at UNC. It's good to be back in Elkin. Like I mentioned on Facebook it feels like "Phase 1" is complete. Her old rod is gone, her Halo is attached, she is starting to straighten up, and we're home. Now we get to figure out "Phase 2".

Natalie was sent home with her Halo along with a wheelchair and a walker. She was also given an adjustable tilt hospital bed with a custom traction attachment made by our new friend Chris Bryant. Most kids that have the Halo get straightened up before they leave the hospital and then have a follow up surgery at the end of their hospital stay. Natalie's spinal curves are so extreme her doctor's thought it would be best if we go home while her spine continues to straighten. They initially thought that she would straighten in about 6 weeks and then they'd develop a plan from there. However, the doctor thinks she will have several months of straightening before a new surgical plan can be made. There really is no way to forecast how long her back will take to straighten but for now we're going with the generic "months". It may be sooner but it is unlikely. We also don't have many indicators of what type of surgery she will have at the end of her traction. There could be growth rods, fusions, or something that we've never heard of but we have zero inclination as to which procedure will best suit Natalie. Once we get to that point we'll be sure to share the plan. We're used to waiting with Natalie and this won't be any different. Until then we'll keep on doing "Phase 2".

So what is "Phase 2"? It's simply waiting and trying to give both of our kiddos as much normalcy as possible.

We've figured out that Natalie's wheelchair can be transported in the back of our Subaru. It's not pretty but it gets the job done. We'll be able to take her to school, to Isaiah's football games, and pretty much anywhere else in town. For now, it works and that helps a lot.

Natalie will be starting half days at school on Monday. She'll do half days until she builds up some endurance and shows that she can physically handle a full day. Principal Colbert and her teachers (Mrs. White, Mrs. Garris, Mrs. Simmons, and others) have been unbelievably gracious to Natalie through this whole process. Mrs. Garris is out on maternity leave but Natalie is so excited for her and her new sweet baby girl. Joanna and I went by Elkin Elementary yesterday to show all of her teachers how to use all of her equipment and they just jumped right in learning. We are completely confident that they will carefully transition her as needed and will make sure she is safe at school. It's refreshing to know that Elkin Elementary has amazing educators that are also loving Moms and Dads that care so much for their students. Natalie is very excited to get back to school and so are we.

Also in the next week or so we'll start visiting church again. FBC Elkin, Elkin Presbyterian, and the Methodist Church here in town have shown us so much love over the last few weeks. They have showered Natalie with encouragement, cards, notes, and treats that have made the hospital so much easier for all of us. People can learn so many lessons from these folks on how to care for their neighbors. We were practically strangers to them yet they chose to love on us and treat us as their own. We can't wait to see everyone again from all of these congregations and figure out how we can plug in and serve along side you.

We'll also (hopefully) start building the treehouse that we've been promising Isaiah. I think the weekends will be nice for getting out in the yard and working on it as a family. He already has his design ready.

Joanna will continue to work from home and i'll be starting back as a substitute teacher in Wilkes County. Thankfully this gives us flexibility during "Phase 2".

We will head back to Chapel Hill every week to two to get x-rays for Natalie and to meet with other departments within her team. We don't expect many significant changes for quite a while so I probably won't be updating the blog unless something important comes up. But we will be posting progress pictures and sending updates via Facebook/Instagram.

I've attached a picture of Natalie's most updated x-ray. On the right is her pre-op x-ray and the one on the left is Monday 9/23. Initially she had a 148 degree curve and now it is at 101. You can see some major changes in her back, chest, and neck. That's certainly progress!

Hope to see everyone soon!

We love you,

Lyle, Joanna, Isaiah, and Natalie

Friday Update: 9/20/2019

I have a few things to update but nothing major. Basically we're at a standstill with coming home. The team is ready for us to go home but it takes a long time to get details and tests and paperwork together. She is doing great and ready to come home!

Thursday night Natalie had a sleep study done to monitor her oxygenation levels. They hooked up brain monitors, oxygen, and all kinds of other wires to see how she is tolerating the 20 pound traction weights. If she gets positive results from the sleep study then pulmonary can release her to Ortho. We're waiting to hear official results but the preliminary comments so far have been positive.

Also Natalie has been given an NG (Nasogastric) feeding tube. The GI team and the dietician have suggested small night feeds through the tube to give her extra calories. She is currently eating about 90% of the calories she needs to gain weight. They need her at about 110% so the NG tube, hypothetically, will help get her to 110%. The tube is a temporary solution and should come out sometime before her next surgery (whenever, and whatever that will be...hopefully in the next several months). Joanna and I will change it out from home about every 6 weeks or so. So if you see her tube don't be scared of it, it's just a tube. It doesn't hurt her and she isn't being fed through it if you're talking with her. She only uses it while she is sleeping. At most it's just a bit uncomfortable and cumbersome for her. Once GI and Diet feels that her caloric intake is good then they can release her to Ortho.

Once all of the teams have released her then the Ortho team (who is the head department in the procedure) will officially release her to come home. After the release/discharge we'll go back to UNC every week or so for x-rays, weigh ins, neuro checks, and any other tests needed. There is a small chance that all of this communication will happen this weekend but realistically after about 4:00 pm on a Friday the hospital shuts down progress until Monday morning. But we're not in a rush, we had already planned to be at the Hospital for longer so if they discharge her early it's just icing on the cake. We want things to happen when they need to and when her team thinks it's appropriate.

On a practical note, Nat's bed should be delivered to the house today from Bridge Street Pharmacy and a preliminary set up for her traction bar is being machined this weekend here in Elkin. She also has a ramp built to get in and out of the house. So when she does get discharged we'll have her room ready at the house.

Thanks again for all the amazing love you all have shown our family. We love you all.  I'll send more updates as they come.

Team Meeting Update

9/12/19 Natalie Update:

Today Joanna and I met with Natalie’s doctors and hospital administration reps, etc. Each person at the meeting represented a team or department that is monitoring Natalie’s progress. These teams are developing a path for Natalie to go home. Some of the groups are; Orthopedics, Gastrointestinal, Pulmonary, Nutrition, Ortho Engineering, Nurse Management, Floor Coordinator, nursing students, and a few other people that just happened to wander in the conference room.

As you can imagine, getting Natalie home is a complicated course to navigate. All departments need to monitor her and give her the green light. So far, all of the departments have given her the go ahead with a few caveats before discharge. A few departments are going to monitor her over the next few days to make sure she’s ready.

For example, pulmonary wants to check her oxygen saturation levels while she sleeps since she is up to her 20 pound traction weight. They’ll bring her back for a full-on sleep study in October but don’t feel it’s necessary yet. The oxygen tests will ensure that her lungs aren’t being stressed due to the extra weights. No major tests but just a simple fingertip monitor at night.              

The GI team wants to calorie track and watch her weight specifically to see how much poundage she can pack on between now and the end of her traction. The more weight she gains the better chances of successful placement of growth rods IF Dr. Stone thinks rods are a good option after traction. If she isn’t gaining enough there is a chance of a temporary feeding tube or a type of medicine that will increase her appetite. This would be used to fatten her up. We’ll just see how much food she will eat. It’s hard to keep weight on her because she exerts so much energy throughout the day just doing everyday activities. She burns it all off. So now she gets to eat anything and everything as much as her little heart desires.

The Ortho Engineering component has a bed lined up for her at home BUT this bed does not currently have an attachment for her traction assembly. The only bed currently set up for this type of traction assembly is at the hospital, so they say. The engineering team has developed an add-on for the at-home bed but the parts won’t come in for the add-on for several weeks or possibly months due to insurance stipulations, etc. Instead of waiting for the add-on they have approved for Joanna and I to design and build an add-on for her bed at home. It’ll be a simple solution. Whenever insurance and bureaucracy get involved with innovation it never ends well. So we’re just going to get some simple parts and do it ourselves. They also made some modifications to her wheelchair and walker and those should be done by the end of the week.

What all this means is that we’re still in a bit of a “limbo” waiting to see how she performs in the testing from each individual team. Hypothetically, as soon as her bed is delivered, we can equip it with the traction add-on and we can start bringing her home (assuming the teams are happy with the testing).

So please keep praying for her teams and the desired outcomes, and for her to keep a good attitude while she’s here. She is busy with Hospital School, great activities, and videos but she is also ready to get home to be with her big brother and her dog. Joanna and I have been rotating every 3 or 4 days and it’s been going well so far. We’ll continue that strategy for as long as it makes sense.

As we have updates we’ll keep shooting them your way. The picture on this post is of Natalie and the “heads” of her teams here at UNC. They’re all very good to her and are working hard to give her everything she needs.

Thanks for everything, we love you all!

The Good News and the Bad News (That's not actually so bad)

Hey Everyone!

I wanted to give an update on Natalie so far this week and give a few specific areas where your thoughts and prayers can be focused.

So far Natalie has been doing an amazing job here at the Hospital. Her Doctors, Nurses, Specialists, and other kids on the floor are having a good time getting to know her. Her pain levels are low and she's feeling comfortable for the first time in years. We're very thankful for how her back in particular is feeling and how low of an impact the pins (screws) from the halo are having on her. She is up to 15 pounds of weight and will be at the full 20 pounds by Monday morning. We've joked this week about how well she is literally "hanging in there". She is eating like the mini-queen she is and being pampered with all kinds of treats. I think if it were up to Natalie she'd just move in permanently. Which brings us to the specific areas of concern. I'll start with the "Bad (but not so bad) News".

The Bad: So far, even though her back is feeling great the traction therapy has done very little actual correction to her spine. Her neck is very straight now, which is wonderful, but her spine is still very contorted. What this means is that Dr. Stone has already said that she will more than likely be in the halo on the longer end of the spectrum. He said yesterday that the 3 month period will realistically be where we'll be able to tell how much it's working. So she'll wear the halo, be in her wheelchair, and use her walker for a while longer while she is stretched out. So that is the not so good news. There is a small correction so far...but it very insignificant.

The Good News: Since Natalie is doing so well with her pain management and is adjusting so well with her equipment then Dr. Stone is going to try to send her home as soon as is reasonably possible. He's even shooting for sometime next week! Rather than have her wait for the traction to work he has asked us if we'd be willing to take her home and see how she responds over the next several weeks and months. He'd have us come back every Friday for x-rays and other testing but other than that we'd be home in Elkin where we all ultimately want to be. Dr. Stone has never sent a Halo traction patient home before but since Joanna and I are the first ones at Chapel Hill to learn the system then he thinks we'll be able to take care of her at home just as well as she would be cared for in the hospital. So we'd once again be the guinea pigs (which we are used to). So be on the look out for coming home updates. I'll send word as soon as she's been sprung!

So that's the news, good and bad. With this comes a great deal of uncertainty and a significant amount of logistical maneuvering. Here are the areas that you can pray for in the upcoming days:

1. That Natalie will remain feeling great and will continue her therapy so Dr. Stone will remain confident that she is fit to come home.

2. That all of her pulmonary markers will be consistent with her progress so far. By that I mean that she is actually feeling and breathing as well as she seems from an objective standpoint. She'll have labs drawn to study oxygenation, etc. Pray that she hits her goals there.

3. That all of her equipment will be cleared to come home. Her walker and her wheelchair have already been assigned to come with us upon checkout but her bed has yet to be approved. The docs are fighting with the admin team on this one. I'm sure a resolution will be met but it will significantly effect our time-frame if her bed is not approved.

4. That we'll figure out how to transport all of her equipment. We have a plan to get everything home and set up BUT we never thought about what it looks like to actual take her places. Her chair and walker have a large crane-like system attached and it will be challenging to figure out how to get her to school, church, shopping etc. I'm certain we can figure it out but it may take a few of us "redneck engineers" to set up a system haha.

5. That once home, she'll be able to maintain her physical therapy regimen. It's easy at the hospital to go for long walks but it will be another story once we're home. So pray that we'll be able to figure out how all the pieces will fit together.

6. That Joanna and I will find peace about bringing her home. On one hand we really want to be home as a complete family. On the other hand there is quite a peace about being in the hospital and having someone watch over her with us. We think it's the best to bring her home but we would love to feel better about it. Consistently being the guinea pig sometimes takes a toll.

So that's all for now! Thank you once again for your love and care for Natalie and for us. We can't wait to see how well she does over the next few weeks and can't wait to see everyone in Elkin ASAP!

We love you all.

P.S. I put one of her old x-rays before the rod was taken out and one of after. You can start to see a difference if you squirt real hard :-)

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.