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!