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 :-)
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