Finally! Some Answers!!!

What a day it has been! Mike, Kayleigh, and I got up at 5:30am and were out the door by 6:30am to head to Duke Medical Center for Kayleigh's Autonomic Studies to determine what's going on. We were checked in by 9am and at 10am they got her prepped. Not one... but TWO tables of needles, IV tubing, meds, and more for 1 young girl! Yikes!


She had to have an arterial line placed as well as a traditional IV. The arterial line goes directly into a major artery into the wrist and is quite painful to place and tolerate! She handled it like a champ though! Squished up her nose just a little with the numbing medicine, but that was it! I think the IV was a bit harder on her (it's up a little higher in the same arm!) because her vein started spasming on the nurse as she was placing it! In addition, she had a constant EKG going and a Transcranial Doppler done.

Then we waited... a LONG time! They needed her to become calm and peaceful so that they would know and capture her "normal". She didn't want a picture of her face... but I did get her beautiful feet!


Not having Justin with her was hard this go around! But... she listened to a video of him singing and playing the guitar and that made her smile!


Then it was time to start..... I still don't know exactly what all was done in the testing. But - I do know the results.

The first thing they told us was "after about 23 minutes she went asystolic....". My mouth hit the floor! Mike looked a bit clueless so Dr. Kanter then said "she had no pulse or blood pressure.... she was clinically dead." Thankfully, it was a very controlled environment and Dr. Kanter and his nurse Angela are FANTASTIC and were right on the ball!

When her heart started beating again though, it was way out of rhythm and took a long time and some meds to get it recovered. (If you look at the picture of the EKG strip below you can see how right before she flat lined her beat was very slow, then afterwards it was VERY erratic!)


So - what does all this mean?

Well... she has 2 different things going on, and possibly even 3.

First - She without a doubt has Neurocardiogenic Syndrome. In simple terms, this means that her autonomic nervous system is hyperactive and causing an extreme response to certain stimuli.

Second - She "more than likely" has a form of Dysautonomia called Postural Orthostatic Tachycardia Syndrome. The labs he drew during the test today will give us the 100% definitive on this, but he said he expects them to come back positive based on what he saw. The only thing that he saw that indicates it may NOT be POTS is that her heart rate only went up to about 90-100 beats per minute. With POTS it typically goes up to 120+ when the body is standing.

Third - She may very well have a problem with her SA node in her heart. This is evidenced by the arrythmia she was in from the second they hooked her up to the monitors as well as the difficulty her heart had recovering from her asystolic episode. The SA node should have put her heart right back into rhythm and it needed some help.

Where do we go from here?

She has been taking Midodrine and Florinef. She is to continue those medications just as she has been taking them for the NCS and POTS. She was started on these meds a while ago with suspicion that she had some form of Dysautonomia.

They've also added something called Scopalamine. It will help calm her nausea and hopefully allow her to eat, and it can increase her heart beat and help settle her system down.

He wants to put her on a beta blocker, but can't do it at this time. If she has no improvement in 2 weeks he has another drug he can try before we start giving serious consideration to a pacemaker. It is looking like this is going to be part of her future, but he wants to be certain that he's tried every other avenue first and we are ok with that.

She is home tonight and feeling very blah, weak, and tired. But she is stable and doing ok. Mike and I are doing ok too... just very tired!

Thank you for your prayers, love, support, meals, phone calls, emails, texts, and more! We are so very blessed with a community of friends and family who love our girl so very much!!!