Life on the Lyons Rollercoaster

On Tuesday night, April 12th, we got a phone call from a friend who was at Reagan High School telling us Kayleigh had collapsed again. A few minutes later I called another friend who was there who said this time, it just looked different, then she began to seize. That earned her her very first EMS ride to the hospital! Since then, we have been in a whirlwind that we can't seem to escape.

Kayleigh had a significantly low heart rate (as low as 38!!!) and her blood pressure was very low as well. Since then, the symptoms have continued and she has had a massive headache (probably from the seizure); is weak, fatigued, and just washed out. She is really struggling with recovery of this episode and is losing weight.

In the days after she collapsed we had an MRI done (to rule out a tumor), we've seen neurology (to rule out a seizure disorder), and a cardiologist to figure out why her heart rate and blood pressure are so low. Every avenue they've suspected has become a dead end leaving us more frustrated and having more questions and have left the doctors baffled..... until last Friday.

After Kayleigh's most recent lab work, symptoms, and a few things that have happened to her in the past; Kayleigh's doctor here in Winston feels very strongly that she has Addison's Disease. Addison's Disease is an autoimmune disease where her adrenal glands don't work properly, causing very low sodium and cortisol in her body. When you have low sodium your heart begins to slow down and not beat properly causing you to lose consciousness. Low cortisol causes your body to not recover well after any trauma or illness. It explains so much that has happened to Kayleigh over the last few years!! For the first time in a LONG time, Kayleigh smiled and felt some relief that she has an answer!!

Kayleigh has already began one of the treatments for it and they are working on adjusting the medication to help increase her sodium level and improve her heart function. In the meantime, her medical care is being transferred to Duke Medical Center in Durham where they will continue the final testing for Addison's and adjust her medications. She will have a long road ahead of her to get it all straightened out, but once it is she can live a completely normal life; and this we are thankful for!!!

Through it all... Kayleigh's boyfriend, Justin, has stood by her side firmly. I tell ya... he's just as much her advocate as we are! Just today he called me and said "why can't they do this sooner?". He has been her rock and has held her tight when she's needed it, yet backed away when he knew she needed that too.

Kayleigh's youth leader, and my dear friend Cindy has also been a huge support. Cindy spent an entire afternoon and evening with us, and even stayed with us at the hospital during one her tests. As a matter of fact... she asked more questions of the nurse than I did during Kayleigh's echocardiogram!! But for that, I am grateful because my mind was in no shape to even think about what I should be asking!!

And JUST to keep us on our toes... Kayleigh had a funny mole that felt "lumpy" under it. Her doctor felt it needed removed because of it's lacey edges, the way it felt, and my Mom's Melanoma. So, today, off we went. The whole thing took about 20 minutes once they got her numb and I got to watch it all! (Have to admit... it was pretty cool!) Anywhoo.... it ended up being a bit bigger and deeper than anticipated, but she handled it like a trooper! So far she has felt no pain, but I'm guessing that will change overnight!

Our church family at River Oaks have been praying continuously for her, our youth pastor (Chip Herrera) stayed at the hospital one night until 2am with us, meals have been delivered, friends stopped by and called to check in on her, and my boss has been MORE than understanding and allowed me to be flexible so that I can be with Kayleigh at appointments, tests, and procedures. It is with tears in my eyes that I say we are SOOOOOOO very grateful to each and every person who has walked this journey with us and for the love they have shown to Kayleigh and to our family.

So... that's Life in the Lyons Family over the last 3 weeks... we're so ready to get off the roller coaster, but we are just now climbing the hill and have a way to go before it stops!