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 :-)