Good Evening Everyone,

I’m not sure how many people are still following this site, but now is a good time to update it. Its been a while since I written anything down about Kelsey and all she has been going through lately, so this may be a little rough.

Most of you know that we have had a rather mild, at least by Kelsey’s standards, summer. The monitor she has been on has continues to serve as a reminder that we are no where near finished with this. We are alarmed anywhere from 10 to 50 times a night that her oxygen and/or heart rate is still dropping. We started a test program with LifeWatch about 3 months ago with a monitor they think will help. It tracks her heart rate and if there is a significant drop that last for a prolonged period, it will alarm at the monitoring company and they will dispatch an ambulance. So far, we have not had an ambulance show up unexpectedly.

There have been instances over the summer that caused concern, but it seems so long ago that I honestly can’t remember all of the details. But over the last 6 weeks we have seen notable changes in Kelsey’s condition. Her rates have been getting dangerously low, 50’s for the heart and a few times I’ve seen her oxygen in the low 80’s even high 70’s. The specialist we have been seeing really do not know what to do at this point. They all say, “Well, if her rates drop to ‘XX’ then we’ll do something.” What, what exactly will we do? That seems to be the million dollar question. She had an MRI two weeks ago that showed no signs of bone regrowth or any other forms of compression, but by the symptoms, something is going on. We are scheduled to meet with a specialist in Maryland on November 12th that will tell us if she has Ehlers Danlos syndrome and tethered cord. If she tests positive for one or both of these, then we will have a new direction. Until then, we are at a stand still.

Last Wednesday, the 15th, Kelsey and I were sitting on the couch downloading her monitor, well, I was downloading it, she was supervising. All of sudden, she sat up and said, “Dad, feel my heart, its doing it again.” I put my hand over her heart and it felt like she had butterflies in her breast pocket. Her heart was beating very erratically. Then she grabbed her throat, started crying and fell on the floor, trying desperately to take a breath. I was able to calm her, and Nicole, long enough to move her to our bed and lay her down comfortably. Her pupils were rapidly changing sizes, from needle size to marble size, very erratically. She badly wanted to go to sleep, and as I was trying to keep her awake, her eyes began to roll back in her head. I told Nicole to call 911 and by the time police and First Responder showed up, she was coming back to normal. As the ambulance showed up, she had pretty much gotten back to normal Kelsey status, like nothing had ever happened.

Nicole and I decided that we would draft a letter to all the pulmanologist in the South East and shotgun them out, hoping someone has seen this before and could offer a fresh perspective. So far we have had two responses, one from Orlando and one from Augusta. Nicole left tonight for Orlando to meet with that specialist on Wednesday the 21st. Hopefully they will be able to treat her secondary problems while we figure out what is causing the primary problem.

That is a very condensed version of what Kelsey has been experiencing lately and I plan to start up documenting her journey once again. Please continue to keep Kelsey and Nicole in your prayers.

In Christ,
A