I Am Not "OK"...

Many have asked me the last few days "How are you?". My response is usually "I'm ok... just tired."

But if I'm keeping it real. I am not ok. Period.

I am angry.
I am sad.
I am frustrated.
I am tired.
I am worn out.

I am angry about of all the "junk" that has happened in our family in 2011! We have endured everything from the loss of best friends, to serious illness, to job changes, to troubled teens, to financial chaos, to stress in our marriage... we've seen it all. Way more than what I (selfishly) think should be our fair share!

I often feel sad and alone. I feel like I have to be the one in the house to keep things light and airy when things go wrong. I am usually the optimist in our house and Mike is more of a realist with a tad of pessimist thrown in now and again. Sometimes, I need the ability to just fall apart into someone else's arms for support and love. I am tired of being the happy strong one.

I get frustrated when I constantly hear people say "I don't know how you do it" or "you are so strong". Everyone assumes I am so strong and have it all together. I do not. I promise you.

I am tired of constantly worrying about what is around the next corner that is going to hit us head on! I am especially tired of seeing my daughter endure so very much at such a young age! Yes, she does it with grace and faith like none other.... but I am sure that even she.is.tired!

I am worn out plain and simple.

Tonight, I keep reading over and over Matthew 11:28... "Come to me, all you who are weary and burdened, and I will give you rest."

Father God, our family is weary. We are tired. We need Your help for peace and rest. Amen.

"Just Suck it Up"...

These are words I will NEVER say again to any of my kids. Let me start from the beginning...

Kayleigh's boyfriend, Justin, flew in on Tuesday from Colorado. She hasn't seen him since June, when she was still one very sick chickadee! She spent most of Tuesday through Saturday with him other than to sleep, so Mike and I hardly saw her at all. Saturday afternoon I picked her up to take her gift registry shopping with a dear friend of ours. Throughout the store she was very quiet. She did complain on and off about feeling tired and getting short of breath easy. She said it started Friday and she just had no energy. The more she talked about it, the more frustrated I became (yeah.... this is about where my foot was firmly planted in my mouth....).

After we were done shopping, we dropped off Cindy. When it was just Kayleigh and I, I told her that I really thought she was falling into a habit of having something to complain about around Justin because that's where they left off before. Reminded her that part of her disease process is extreme fatigue, she'd have to learn to adjust to things like that, and really "just suck it up once in a while...". When she got out of the car, I knew she was upset. But, I drove away anyhow.

Sunday evening was the next time I really saw Kayleigh enough to see something was definitely NOT right! She was very winded and seemed kind of pale. She went downstairs to her room and I followed shortly after to check on her. She told me that going up and down the stairs was quite difficult and she had pain in the right side of her chest when she was breathing. Still, I wasn't OVERLY worried, but I was concerned enough to call a friend of ours who is a pulmonologist. He suggested taking her in to our family doctor first thing in the morning, unless it worsened.

Monday morning, before leaving for work, I stopped and checked in on Kayleigh. She told me it was becoming more difficult to breathe, but she was ok. I went on to work and Mike took her to the doctor at 10am. The doctor did a chest xray, but with stable vitals he told her that he thought maybe it was pleurisy. Gave her an inhaler and antibiotic and sent her on her way. No more than 30 minutes after Kayleigh sent me the message she was ok and going home, our family doctor called us with news that made me feel like the world's WORST parent! "Pediatric radiology called from Baptist, you and Michael need to get Kayleigh to the ED NOW, she has a collapsed right lung".

And I told her 2 days ago she was fine and to "suck it up!".

This starts our whirlwind week. Monday was very fast paced. Got to the ED where pediatric surgery was waiting on her and put in a chest tube to evacuate the air that was causing the collapsed lung. A CT scan later in the evening indicated it helped, but it didn't do the trick completely and they recommended surgery. Her chances of recurrence without the surgery went from 50% if the chest tube worked, now to 75%. She was made NPO and admitted, with surgery scheduled for the next day.

Tuesday, her surgeon and anesthesiologist took EVERY precaution to be certain Kayleigh didn't have any trouble with her dysautonomia during surgery. They "salt loaded" her to be sure her BP stayed up, they put her on an external pacer to keep her heart rate regular, AND they gave her an injection of epinephrine to up her baseline heartrate (which was a little low from the morphine). Off she went to the OR.

Surgery went exactly as planned. Kayleigh had little blistery type things called "blebs" on the top of her right lung. One of these blebs (the white one in the middle) popped creating a hole that let air get in the space between the pleura and the lung, thus pushing down and collapsing the lung. So, they just cut out the portion of the lung that had these blebs on it, stapled it closed, and she was done. Took about 3 hours in total and before we knew it the surgeon came out to the waiting room to tell us she did great and they were wheeling her into recovery. He said we'd get to see her in about 45 minutes and she'd go to an intermediate care room for the night, then back to the floor. No big deal.

Well... we ALL know Kayleigh does things her OWN way! 45 minutes turned into over an hour when we started wondering what on earth was going on. When a nurse finally came to get us, Kayleigh was being wheeled to the Pediatric Intensive Care Unit!!! They didn't say much, just not to be alarmed, but they thought Kayleigh needed a bit closer attention with all she had going on. They were kind of quiet about it.

After they got her all settled into the PICU we slowly learned more info. Turned out, as was VERY evident to us, Kayleigh did NOT want to wake up after anesthesia. She could nod her head yes and no and her eyes were "sort of" open. But she couldn't speak and she had no purposeful eye contact at all. She seemed so very distant and very far away. At the same time, she was beautiful. And her Daddy pointed out that watching her breathe in and out, and watching her pulse, was the most beautiful thing EVER!


While in the PICU I noticed a ventilator near her bed. Didn't really think twice about it, after all it's an ICU. Figured they were in all the rooms. The next morning (Wednesday) the nurse came in to get it and made a comment about being glad they didn't need it. I asked what she meant, she then said that in the recovery room, Kayleigh had difficulty breathing on her own after surgery, so they were told to have it available. I'm sure I went blank at that point because she reassured me that at no point did she even think she would need it!

Later that morning (still Wednesday) Kayleigh's surgeon (who is FAN-FLIPPIN-TASTIC!) came in and turned off the vacuum seal on her chest tube. He said they'd get an xray in a few hours, see how it looked, and maybe even pull her chest tube out so that she could go home Thursday evening. SWEET!!! Around 2:30 they came and did the xray in the PICU, then moved her to the adolescence floor. I asked about the xray and was told they'd read it and come see us on 9. No problem!

HA! Remember.... It's KAYLEIGH!!! Problem....

We weren't on 9 more than 30 minutes when the nurse came in and said the doctor was on his way up, but she had orders to put Kayleigh back on vacuum seal right away. Well crap! I was afraid this meant we were heading back to the PICU. Dr. P came in and explained that her lung was not staying inflated on it's own quite yet and showed an area that was still collapsed. He decided that for Kayleigh, vacuum for another 24 hours would be the plan, he'd try her off of it again on Thursday morning. Thankfully, Dr. P said she could stay on 9 as long as her vitals remained stable. She was "sort of" waking up a little (yep - 24 hours post op and we were still wanting to stay asleep!) and that was the primary reason she was in the PICU anyhow.

Thursday morning came and they did another xray ON the vacuum.... still a small leak so vacuum stays ANOTHER day!!! Thankfully, Thursday she was feeling better and we even let some visitors come. She was in and out of it most of the day, but she at least was able to visit during her "with it" times. Later in the afternoon during routine vitals they discovered Kayleigh was starting to fever. They jumped right on that and got her on antibiotics again because they suspected something was brewing.

Friday morning Dr. P came in right as radiology did. He read the first xray as she did it (vacuum still on) and he seemed more pleased with the lung itself, other than she now had fluid.... awesome.... pneumonia starting! Thankfully, the day before the nurses were on it and already had a resident start Kayleigh on antibiotics. Dr. P then turned off vacuum seal for another try and said he'd see us at 2:30 for another xray. If it looked good, he'd pull the tube out Saturday morning so we could hopefully come home on Sunday.

At 2:30 we ended up going downstairs to xray instead of them coming to us so they could get some better views. About 3:30, in walks doc who said "how'd ya like to get rid of that tube?". Kayleigh was THRILLED! Within 15 minutes the tube was gone!

Saturday morning Dr. P came in to see her. He was pretty pleased with her vitals and sent us to xray. Said if the xray was good - we could go home a day earlier than expected. Woo-hoooo!!!

But... again.... she is KAYLEIGH! Nothing goes as planned in Kayleigh's world!

Kayleigh got up to go to the bathroom and noticed she had a pocket of swelling on her lower back. No where CLOSE to where surgery was, but it was sizable! The area was comparable to a dessert plate just above the sacrum and was very fluid filled. The nurse paged the doctor who then ordered more xrays. A little while later one of the doctors came in and said her chest xray was clear, but she couldn't do the discharge quite yet because of this new development. Ugh!!! She looked at Kayleigh's area again and then went to radiology to talk to the radiologist. We anxiously waited for her to return.

Over an hour later the doctor came back and said the sweetest words..... "you can go home today!".

We are now home and she is resting comfortably on her very own couch.

She will see the surgeon in 2 weeks, and she also has to see someone for the swollen area on her lower back. But, she should recovery completely with very little chance of this happening ever again.

Praise God for our sweet angel!!!

Whew... Been a While!

According to the date on my last post... it's been over a month since I've updated! I'll do my best to catch everyone up on the last 6 weeks!

We had a Sunday afternoon free (rare for us!) so Mike and I took Chase and Paige to Pilot Mountain to climb and hike a bit. Paige gets braver and braver every time we go and Chase always tries to climb the tallest of rocks! Makes me nervous, but I love spending time with them like this! Always makes for great memories!!


November 2nd we celebrated our 20th wedding anniversary. Mike and I enjoyed an entire late afternoon and evening together. We topped off the night at Carrabas for a nice dinner. A disheveled lady walked in and sat alone at a table beside us and proceeded to pull out her knitting stuff. I tried hard not to chuckle and succeeded for a few minutes.... until the waitress asked her what she'd like to drink and the lady pulled out her own can of Diet Shasta soda!!! Mike and I were SURE that Candid Camera was closeby!!

We had Paige's 9th birthday party on Friday November 4th... a few days early! She invited a few of her best friends over for a night of manicures and movies - compliments of her big sister, Kayleigh! Paige was MORE than thrilled with her Password Journal from Mommy and Daddy, and the girls had a blast!!!


2 days later Paige had quite the accident! She was playing at one of her best friend's house and fell coming out of the tree house. Mike and I were at home when we got the phone call that they were taking her to the hospital because it appeared she had broken her jaw.... YIKES!! When we got there she was calmed down and doing ok. After 4 1/2 hours, a bunch of xrays, and big sister keeping her calm... the verdict was no fracture... but she definitely needed her chin glued up!


November 19th was a big day around our house... Kayleigh, Chase, and my best friend Jen's daughter Juli were all baptized at our church. Kayleigh and Chase were baptized as infants, but decided to do this on their own to acknowledge their commitment to Christ. So proud of all 3 of them!!!


Later the same day we decked our halls for the Holiday! Decorating our house is always a big family event with lots of laughs and memories shared decorating the many trees we put up!

Ever since my lifelong friend, Jenni, and her family moved here a few years ago, we've celebrated Thanksgiving with them. This year was extra special because Jim's parents, Bill and Sue, were here from Arizona to celebrate with us AND Kayleigh's boyfriend, Justin, flew in from the Air Force Academy for a few days. Coincidentally... this is the only picture I took of Thanksgiving Day!!


Yesterday afternoon was super fun. Very dear friends, Jay and Cindy Dietrich, are adopting a sweet little girl. Mike and I, with the Heinz family, are hosting an Adoption Celebration to help them prepare for Sarah Elizabeth to come home soon. Kayleigh, Paige, and I took Cindy to Target so she could do her gift registry. Paige had a blast "shooting" all the price tags and finding fun things for Sarah to have waiting for her! We are so very excited for Jay and Cindy and are thankful to be able to do this for them after ALL they did for us this summer when Kayleigh was sick!


Today it's just been Mike, Paige, and I. We ended up missing church, but have had a great day! Paige insisted on making Daddy a big breakfast (with a little help from Mommy of course!) and she was so excited that he enjoyed every bit of it! After breakfast, Paige even cleaned the entire breakfast mess!


After breakfast Paige helped me make Grandma Casto's famous Chocolate Pie! She enjoyed "cleaning up" what was left after the pie was poured into the shell.... but that IS the best part of making the pie.... right!?!


That's it... 6 weeks of Lyons life in one post! I'll try hard to not go another 6 weeks without an update!

Much love!

Video Series on Dysautonomia

As many of you know, Kayleigh was diagnosed with a complicated form of Dysautonomia this summer after some testing on July 5th followed by a prolonged hospital stay. I ran across these videos on the DINET forum and it explains Dysautonomia perfectly. If you have walked this path with us or if you know Kayleigh well and spend time with her regularly, I ENCOURAGE you to watch this video to better understand what she goes through on a daily basis. The series is long (they are in order here)... but it is very worth it!

Part 1


Part 2


Part 3



We hope this helps! It certainly has helped us... we are learning more about her disease each and every day!

"Consider it Pure Joy...."

I've been blogging a few years now. A while back I posted a blog titled "Our Conflicting Views on Prayer" that listed just some of the trials Michael and I have endured. (You can click on the title if you want to read it.) Since then we can add a few things to the list.... nearly losing our daughter this summer for one, and then last week nearly losing my father.

I have recited James 1:2-3 many times to myself over the last several years....

"Consider it PURE JOY, my brothers and sisters, whenever you face trials of many kinds, because yo know that the testing of your faith produces perseverance."

I'm not very good at following His word here. And if I'm being completely honest with myself, at times I even get angry because I feel like I've been given my fair share of trials and tribulations to be joyful about! I even "joked" with a friend last week telling her "I get it.... I'm JOYFUL... let someone ELSE be JOYFUL because I've had about all the JOY I can handle!".

Well this week, God gave me my "Come to Jesus Talk" on a few occasions...

First, at small group on Wednesday night we ended up on this very topic. What a true faith looks like. I didn't say much during our meeting time, but it was heavy on my heart all evening. I left there that night reminded that I really struggle with trusting God's ways through trials and having a true faith that His plan WILL prevail and guide me down His path. Then, at church yesterday, Pastor David laid it right back out there again! The message..... true faith in all situations!

I can't even venture a guess as to why we go through what we do, or why some seem to have it so much worse or easier than others. But, what I have realized is that I recite James 1:2-3 to myself as a way to comfort myself with the words and I rarely let the myself act on what it's telling me. Have a true faith and just give it up to God, let him take control and take over; no matter HOW hard the situation.

What we have learned and experienced is that when we do stand tall and persevere, we are more grateful. Grateful for our children, grateful for insurance, grateful for friends, grateful for church community, grateful for family.... just grateful! And JOYFUL that we have children, insurance, friends, church community, family, and more!

He doesn't want us to go it alone.... he doesn't want us to fret and worry. He wants us to give it up to Him. To have faith. A true faith. "And without faith it is IMPOSSIBLE to please God..." (Hebrews 11:6).

Goodbye Sweet Boy...

-Andy earned his angel wings September 6th, 2011 at approximately 9pm-

We are so grateful to have rescued you and given you a good life for the last 5 years. We will love you and miss you always!

Happy 13th Birthday CHASE!

Chase turns 13 years old today, at 12:25pm to be precise! What a day that was for all of us. Grandma and Grandpa Casto made the drive to Bloomington for your birth - we were so glad they were there!

Chase was determined to be born that day regardless of the planned c-section! I woke up that morning and went into labor before we even left for the hospital. Created quite the stir when we got to the hospital considering I HAD to have a c-section! Little did we know that was just the beginning of the day's chaos.

After all 9 pounds 6 ounces of Chase was delivered via c-section things got pretty ugly for a while. I remember being in the recovery room and Mike being with me. Then all the nurses scurrying around, Mike being pushed out of the room, and then rushing me back into surgery. At one point, after losing several pints of blood, the nurse went out to tell Mike and my parents I was bleeding bad and they weren't able to stop it - the outcome was looking very grim. Fortunately, by the power of God, they were wrong.

I don't remember anything after recovery until the next day when I was told what happened. Mike looked at me with tears in his eyes saying I scared them all and I was never to do that again. He was terrified of losing me and being a single father of 3.

I spent the next week in the hospital and then was able to go home. We have enjoyed every minute of watching Chase grow up !

Chase - you bring so much joy to our lives! We're so very proud of how far you've come and we know that you will continue to reach for the stars! We love you Buddy! Mom and Dad

What a Blessing She Is!

A Note From Kayleigh...

Yes I know it is long but please take the time to read it.

2011.

For those of you who know me particularly well, you know that I am not a fan of odd numbers. For those of you who know me in general, I am a pretty optimistic person about anything. I wasn't too thrilled about the new year partially because of the odd number, but also because the past two years, the new year has started rather badly, but I worked my hardest to stay positive about it all. January and February are typically the hardest months I deal with each year, and my heart hoped badly that this year could be different than the last two. Let me take you back a little bit. My freshman year on February 18, a close friend of mine and beautiful soul to so many others passed away at fifteen. Mckanna Elaine Young was an amazing girl and it hurts to wonder what had gotten her to the place she ended in, but I forever love her and hold onto her soul. My sophomore year on January 12, another friend and comedic heart who lightened any persons day also passed away. Michael Robert Lovelady, much like Mckanna always brought a smile to everyone's face. Heading into the new year of my junior year of high school..my heart was already sore from holding onto Michael and Mckanna..and my biggest wish was for this year to be normal..for everything to stay the same and to just give God control and have an amazing year. Much as things go, though..things couldn't be that easy.

Nicholas Doub..oh my dear, what a person. Nick was the type of person to always bring a smile to your face no matter what situation, what time of day, what place you're in and he took advantage of that without ever realizing he did so. I met Nick my freshman year and we had always been close friends since the day he walked up and said hi and gave me a hug..no hesitations..not knowing me..no judgment. That is just how he was. You know those comments and jokes people tell that stop you in your tracks and you give yourself a facepalm and laugh at whoever said it? Nicki was the type who could tell those jokes and say those things and make people's hearts lighter because of the aura he had when he said them. I can think back to so many times..he could run up and say things like "One day, a guy walked into a bar and said ouch...don't you get it? Like a bar, bar like ouch (smacks head)." and "I tried to run you over today, it didn't work," and everyone would just smile and giggle because he had the biggest grin on his face when he said these things. Yeah, that was the wonderful essence of Nick that I remember and love..and miss. Six days into the new year, everything seemed normal at 7:40 in the morning. I was disobeying rules and was on the computer the morning of January sixth, had just eaten breakfast, as I'm sure Nick had, too. No one expected it to be any extraordinary day, though it ended up to be one of the hardest the school had ever faced. I was talking to Nick that morning online, looking forward to the day ahead, not really about anything in particular and around 8 he had to get offline and head to school. (We go to two schools together and the one happens to be across town.) The last think Nicki said was "Today is going to be a great day! I just know it!! See you later Kayleigh! :DD" and he was gone. 8:36 am on January 6, 2011..the Nick I knew and loved was suddenly shattered. Three days were spent in and out of his hospital room...within none of them did he ever wake up..ever move..ever look at anyone with those beautiful blue eyes again. I have often wished I could go back to that morning and tell him everything I never did..how much he means to me, how his smile lights up my day, how loved he is, by everyone and me..but I didn't need to tell him those things for him to know..he knew he was loved. As we filed in through that ICU room all weekend, he may not have been awake..but I know he heard every person who came in to tell him see you later..that everything is going to be okay. 11:42 pm on January 9, 2011, Nicki was gone up with the Lord, seated beside Him, forever loved.

Four days later, January 13, 2011. The day of Nick's funeral, one day after Michael's one year anniversary. Hundreds of people were packed into that church hall..all for Nick..all for his family, all for each other. God's presence was so alive in that room it was hard to focus..and Nick was there beside us all, telling us he was okay as we sat there, looking at him almost as if he were sleeping. That day is one of the hardest I have ever endured.

I've learned from experience, and from being taught, that with every bad situation, there is a bright outcome. Nick gave his organs and is going to save seven other lives with them. Nick brought at least one person to faith. Nick brought us all together as a family and gave us the opportunity to bond and create everlasting friendships. And, through those bonds, he brought someone to me to comfort me who is now my boyfriend of almost seven months, Justin Michael Dant.

On January 16, 2011, I started dating Justin Michael Dant, who, to this day has become a saving grace to me.

The first few weeks were difficult..I often shut people out and didn't want to speak to anyone at all. It almost seemed as if everything was spiraling down, if my melodramatic self might say. I wanted Nick back and that was that...but I finally started to realize it wouldn't happen and surrounded myself with friends and family, loved ones and looked more to the good than the bad. Things finally started to feel normal. The musical had started and rehearsals often kept me busy, as well as being with Justin and close friends, they served as a good distraction, especially through Mckanna's two year anniversary. Things finally seemed okay again. I started to plan things again, and had a military ball and youth retreat coming up. For the time being, I was focusing on my life and the people in it and staying busy. Youth retreats have always been something I adore because it gives me a chance to get away and really get some Kayleigh-God time that is sometimes hard to get when I'm surrounded by people. I left for the retreat the day after a wonderful night at a military ball with Justin. Rehearsals were going well, things were starting to build back up..but again..things can't always go perfect, can they. March 18, we lost another sweet Reagan Raider after she was hit by oncoming traffic after suddenly turning into the street. Brooke Elizabeth Edwards, like everyone else, always brought smiles to peoples faces. I wasn't as close to Brooke, but several friends were and seeing everyone in pain was upsetting. We held a memorial at school for both Nick and Brooke, and the two teachers that passed away during the school year, as well.

I started to get sick at the beginning of April, as I generally do every spring, but this time was different...two nights before the opening night of the rehearsal, I collapsed backstage and was unconscious for 25 minutes, then started seizing. I was sent by ambulance to Baptist ER where we waited in the lobby for two hours after which I felt find and the doctors did not do anything, and I went home. Besides being very tired and feeling sick, I felt somewhat normal and went on stage for all three nights. The show much go on, no? I was kept under close watch of my mother and other cast members backstage and the show went pretty well. After a few weeks, though, I noticed I started feeling worse and was tired much more often, the days started to get longer and soon, appointments were being scheduled to figure out what was going on. Until the appointments came in late may, I took each day step by step.

Now, I am not one to admit my fears or when I'm upset because other people are more important in my eyes..but after May 10th, I had hit a point near rock bottom and couldn't risk keeping it all to myself anymore. Jessie Hill Davis passed away after battling her entire life with cistic fibrosis. If ever I had to point out one incredibly strong person in my life..her name comes to mind because this is a nasty disease, its painful and hard to live with, but she managed. She had died once and was revived and kept on smiling. Being the third Raider lost within five months, everyone was on edge and fearing any more loss. I went to her viewing with Justin..and the feeling of the entire reason we were there was one that was extremely hard to understand..but again with the help of others, and prayers being sent out from all over, we all managed to pull through as best we could together.

A week after Jessie passed away was when most of my physical health started to go downhill. It had gotten so bad to the point where I was pulled out of school and put on homebound because I couldn't go an entire day without going into the office to sit and rest for a while because I felt incredibly sick and tired, occasionally dizzy as well. I was thankfully able to finish out the school year on time and summer had started. My summer basically revolved around trying to feel the best that I could and spending most waking moments with Justin become on June 22nd, he left for the US Air Force Academy in Colorado. The only contact I was given with him after he left was through letters, which was difficult, but for him and our relationship, more than worth it. After he left, I continued to go into what we called a "downward spiral" and was scheduled for tests and procedures at Duke Hospital in early July. One of which, told us a lot but left a lot of struggle with understanding afterwords. On July 5th, I was scheduled for a Tilt Table test. This test is about forty minutes long..but twenty three minutes into it, my heart stopped and I was clinically dead for fifteen seconds. After pushing meds through an IV and being brought back to consciouness, I was left with a lot of confusion as to what had happened and why things were so bad...understanding it all was hard..but a few days later Justin was given his phone and I had the opportunity to talk to him and gather my thoughts and he helped settle my anxious mind as he always has.

July 11th is when it all started to go down...I was at home that Monday and started feeling very fatigued with chest pain and dizziness, and my vision was blurry. I noticed my blood pressure was rising throughout the day and as it got higher, my heart rate got lower, to the point where for a while it was at 32 beats per minute where the average is 80. My mom came home and we spent a while debating what to do and finally decided to go to Baptist ER once more and I was immediately admitted. I spent two days at Baptist..in which, I had a very bad episode where I remember thinking at one point that I was going to die. Admitting that I am scared is something hard for me to do but I legitimately do not remember ever having felt that much pain and discomfort in so long. On the thirteenth, I was sent home and less than twelve hours later was in a car on the way to Duke Medical Center where I was directly admitted and would be staying for the next two weeks. I spent the days from July 14th to July 25th in the pediatric cardiac unit of Duke Hospital under watchful and very bipolar eyes of nearly seventeen doctors, all switching out each day, debating tasks, choices to make and what to do. At one point, we nearly told the doctors off and I remember thinking that it feels like one step forward and two steps back. I wanted to be home and I wanted everything to just stop and be okay.

Each day I would wake up and read back through messages and letters from Justin, people came to visit me and distract me for a while and my family supported me each step of the way. After several doctors we had to fight with, I was finally given two who both seemed to finally listen to me, the patient, and seemed to actually care about the situation. After carefully adjusting meds and other daily schedules I'd need to follow, and after two weeks of fighting painful and uncomfortable PVCS, Couplets and Bijemy (irregular heart rhythms, skipping beats, doubling beats), not sleeping well and homesickness..I was released the day before my seventeenth birthday and sent home.

Since then, Justin has his computer and I am able to talk to him and keep spirits up, and my friends and family check on me constantly and help me through it all, as well as my God. I am doing better now physically, and still miss Nick, Brooke and Jessie often times, but none of it compares to how thankful I am to be here.

I'm at the point where it has finally hit me how close I was to losing my life, multiple times..part of me wishes my summer hadn't have been spent in the hospital but had it not, my life would be at higher risk right now. Life is precious..and it is here for a reason.

Yes life is hard..it sucks sometimes and we want to give up more than anything, but the thing that I've learned is that its true life doesn't come easy, but its rewarding in the end no matter what you face. The challenges that hit you make you that much stronger in the end. You've been given this life to be thankful for, to live in and live with others and to spread God's love and enjoy the love He has given you. Don't take it forgranted because in a simple second, it could be gone.

I wouldn't trade anything, anyone, any moment, not even the worse, of my life for anything, no matter how hard it has been. Obviously, I have a purpose for being here or I wouldn't be and I'm more excited to see what that reason is then to sit with regrets about what I have dealt with.

I am who I am because of who God made me, and because of the people in my life that have surrounded me and taken the time to put forth effort to care about me.

Thank you to my God for giving me life. Thank you to my parents and family for not giving up on me. Thank you Justin for never leaving my side through all of this and for being such a saving grace to me even from so far away. Thank you to my church family for the prayers and strength. Thank you to my friends who support me and have prayed for me across this whole journey. Thank you to myself for not giving up.

The road ahead of me is difficult...but you know what? I don't care. It's worth ever second. For every moment of pain there are two more of joy. The trials of this life are His mercies in disguise.

Keep the faith, hold the hope, never give up and never let go.

God bless, I love you guys.

Kayleigh

Dysautonomia... What Is It, Anyhow?

Many people have asked us exactly what is wrong with Kayleigh. It does have a name, although it is hard to explain.

Dysautonomia is a dysfunction of the autonomic nervous system in the body. The autonomic nervous system regulates the automatic organ functions of the body that occur on their own... things like heart rate, blood pressure, your temperature, your respiration, your digestion, etc. In Dysautonomia, some of these things don't function properly sending the body into chaos. Often, the symptoms are so unrelated to each other that it's tough to diagnose.

There are 4 types of Dysautonomia and Kayleigh has been diagnosed with 3 types as of the time of discharge from Duke Med! Lucky her!

Postural Orthostatic Tachycardia Syndrome - basically it is when the body is unable to adjust blood pressure and heart rate when a person goes from sit to stand. In Kayleigh's case, when she is sitting and stands up, her heartrate goes up by about 50 beats per minute and her blood pressure drops drastically... all within seconds of standing up. Kind of like an orthostatic hypotension to the max! There are also other things involved in POTS that aren't understood that make one fatigued, weak, and unable to function.

Neurocardiogenic Syndrome - This is characterized also by a rapid drop in blood pressure, but also a rapid drop in heart rate causing the person affected to pass out and sometimes even become asystolic (not have a heartbeat at all for a period of time). Asystole is what the doctors believe has happened to Kayleigh on at least 2 occasions - once when she collapsed on April 12th at school and once during a test they performed at Duke Med on July the 5th.

Primary Autonomic Failure - This is kind of the biggie that lumps everything all together and caused her spiral downward. PAF is a degenerative disorder of the Autonomic Nervous System where her ANS just slowly started to shut down. In Kayleigh's case specifically, it started with a slow decrease in heart rate and blood pressure over a period of time that was so subtle that it went unnoticed because she was functioning pretty well, just got tired easy. As it progressed her ability to eat a normal meal became a problem. She would get hungry, start to eat, and then become very nauseous because her digestive system wasn't responding properly. Eventually, it got to a point where she wasn't eating hardly anything other than things she knew would not make her sick. The worse it got, the less she ate, and her heart rate and blood pressure drastically started to drop, then her heart wasn't able to sustain a normal sinus rhythm. This eventually left her very lethargic, weak, fatigued, and unable to function at all. This, ultimately, is what took us to the Emergency Room on July 11th.

We are very grateful to the team at Duke Medical Center for putting ALL of the pieces of the puzzle together and being able to treat all of the symptoms involved. She will remain on a slew of medications to keep her heart beat and blood pressure where they need to be, allow the nausea to remain at bay and keep her appetite up, and help her maintain her energy and ability to live a normal life.

So blessed to live in a time where modern medicine can give her her life back!

Looking Back...

I've had some time to sit and reflect over the last few weeks. Not sure that's completely a good thing because it's given me time to think about all of the "what if's...". But, it definitely has me appreciating life and the power of prayer!

I don't know that it completely occurred to me how close we came to losing Kayleigh on more than one occasion. Her illness has slowly been taking her body over, leaving her so weak and fatigued that her heart literally was just starting to give up. Our second night in the hospital, at Baptist, we must have had a roomful of doctors and nurses around when she first went into distress. They moved her bed over to make room for the "crash cart" and prepared us for what "could be". The room was oddly calm, I was in a bit of frozen panic, and all Mike could do was say "I get to yell CLEAR" nervously!

Later that night Mike and I were talking to the doctor in the hallway, leaving Kayleigh in the room with a dear friend. Kayleigh, with tears in her eyes, looked at Jen and said "I felt like I really was dying..." When Jen told me of this conversation, my heart just sunk for Kayleigh.

A few days later, while at Duke Med we found ourselves in a similar situation. The doctor that came in explained to us that they were on the verge of pulling the "code blue" switch in her room because her heart rate had just dipped way too low and she was in a dangerous heart rhythm.

There were several occasions where Kayleigh would go into a sustained dangerous rhythm where all we could do was run our fingers through her hair, speak softly to her reassuring her, and keep her calm. I would send out a prayer text to a group of people that simply would state "Pray NOW..." and within minutes she would return to a normal heart rhythm. The two times where Kayleigh was so dangerously close to cardiac arrest we silently prayed and only His healing hand was needed without any other intervention.

Kayleigh is recovering more each and every day! She is eating well again, has energy, and looks better than she has looked in months! We have learned that life is truly a fragile thing and we are not in control of if, only He is. I thank God at the start and finish of each day for not taking our Kayleigh home quite yet!

Life in the Creamsicle Castle

Once upon a time, a princess named Kaybers, had a short stay in a Creamsicle Castle because she got very very sick. She went there to feel better and get stronger because there were lots of nice people there to help her.... but some were not so nice!

When Princess Kaybers first arrived at the Creamsicle Castle off her chariot, Dr. Confuzzled was nowhere to be found so Princess Kaybers was left to the others! They were all scratching their heads with what to do and enlisted the help of Dr. Stapleyourmouthshut, who was NOT very nice at all! Dr. Confuzzled arrived too late to save Princess Kaybers because Dr. Stapleyourmouthshut had already decided to make Princess Kaybers eat all kinds of strange meals (like salad, white rice, and wheat bread) and disregard the map that Dr. Confuzzled had already drew! Dr. Confuzzled decided to sit back and wait for the go ahead to take charge!

In the meantime, Dr. Stapleyourmouthshut put Dr. Perky on the case! Dr. Perky almost immediately decided that Dr. Stapleyourmouthshut was on to something and put Dr. Creeper in charge of peeking in on Princess Kaybers every chance he got! One of Dr. Perky's newbies, Dr. Coolstuff, stopped by late one evening and offered kind words that made Princess Kaybers smile again. Then, the next day, Dr. Perky's knight Dr. Superhero, disagreed with the way that Princess Kaybers had been treated and decided that maybe the help of Dr. Fairygodmother would help get Princess Kaybers out of this mess. So, the King and Queen reluctantly agreed to let the meeting happen.

Dr. Fairygodmother finally arrived a few days later and saved Princess Kaybers from Dr. Stapleyourmouthshut by saying that Princess Kaybers was just too weak before and really needed to be able to make some of her own choices! Princess Kaybers, the King, and the Queen were all very happy!

The next day, Dr. Superhero reenlisted the help of Dr. Confuzzled to make sure that everything was in place and they got back on the right plan! A few little changes did the trick and Dr. Superhero saved the day by rescuing Princess Kaybers on the eve of her birthday! Princess Kaybers was able to finally leave the Creamsicle Castle and return to her own castle on Foxbury Court where the next afternoon a celebration of friends gathered to welcome her home, and she lived happily ever after!

Light at the End of the Tunnel

This is our girl, sitting up on a Sunday morning feeling great! PRAISE GOD!

We also are starting to feel like we see the light at the end of the tunnel! This is what all has happened this weekend...

1) We agreed to let her be seen by a psychologist yesterday morning (the last few weeks have really taken a toll on her). The psychologist said Kayleigh is "delightful", an "old soul", and that she thinks she will be just fine because she clearly has a great support system of friends and family. This little bit of encouragement almost IMMEDIATELY lifted Kayleigh's spirits! To be told you're not crazy is a big thing!

2) The IV Zofran has really helped her nausea and allows her to eat WAY more than she's been eating and her energy level has really improved. She has gone from only able to walk 1 or 2 laps around the unit to 6 laps before she fatigues. Over the weekend, we have successfully transitioned her from IV Zofran to oral Zofran without any trouble! One step closer to going home!

3) Watching the heartrate/blood pressure trends over the last few days finally had them see what we have been seeing and they have decreased her Midodrine dose to 7.5mg and we are starting to see more stabilized blood pressures and heartrates.

4) The multifocal and left ventricular PVCs are still present, but they are less intense and she is getting through them without the miserable scared to death look on her face.

And the best news of the day....

5) She will have a 24 hour holter monitor put on tomorrow morning and taken off Tuesday morning. We hope they read it Tuesday, but it may be Wednesday before we get the results. If the monitor shows that the nature of the PVCs has improved then we get to take her home SURGERY FREE Tuesday or Wednesday!!

So good to finally feel a bit of relief, see a smile on our girl's face, and to see the light at the end of the tunnel!

Friends Make The Days Go Faster!

Nothing like a game of Hungry Hippo with Dean on Wednesday!

Thursday afternoon, Liz and Luke tagged along with Devin... and the Hungry Hippo competition continued!


Andrea tagging along with me on Friday was COMPLETELY unexpected! Loved the smile on Kayleigh's face as she walked in with me!!

A visit from Angie Hutchins was Saturday's surprise!

Community...

Community
com-mu-ni-ti: noun, often attributive
Definition - a unified body of individuals

For us.... it starts at the building above..... River Oaks COMMUNITY Church

One of the sweeping themes through the entire Bible is the idea of God moving people into communities where they will bless others and others will be blessed by them. We have witnessed this direction of the Lord first hand during Kayleigh's illness by the love, support, and prayers of many people! There are many people who have put parts of their lives on hold to help our family out and it brings tears to our eyes each night thinking about the blessings that have came throughout the day.

Jenni and I have been like sisters for many years, and are very close. We met when we were around 5 years old! Our families are very intertwined and we often function as one BIG family! She and Jim have added Chase and Paige to their family for much of the last 8 days while Mike and I are 2 hours away with Kayleigh. Jenni has wiped away my tears after a long drive home, listened to me rant and rave, and offered support and prayer.

Jay and Cindy Dietrich have become very dear friends of ours from church. Cindy is referred to as Kayleigh's "Mama D" and Paige just adores her "Mr. Jay". Cindy has been with Kayleigh from day 1... even beat me to the school the night it all started! These two have given Jim and Jenni a reprieve from Chase and Paige and Cindy is always on call for support for Kayleigh (and me!).

Donna and Steve Heinz have helped us to pick up the pieces with Paige on several occasions over the last month. During our church's VBS, Paige stayed with them a few nights just so that she could attend and we could focus on Kayleigh. This week, while we have been 2 hours away, then again took Paige for a night that was a bit tough on Paige and helped to wipe away the tears and pray with her.


Angie Hutchins has been a HUGE support for Kayleigh, and for Mike and I. She has really helped us understand a lot of the medical terminology, taught us how to do Kayleigh's finger sticks and injections, and has traveled to Duke Children's for appointments with us to be that second set of ears. She and her husband Todd are AMAZING people with so much love for the Lord and for others!

Chip Herrera is Kayleigh's Youth Pastor at church. He and his wife Krista are so good to her and are just wonderful people. The night that Kayleigh was EMS'd to the hospital after collapsing, Chip met us there (without telling his sleeping wife I might add!) and stayed with us until almost 2am!! He always puts his youth kids first and Kayleigh adores him!

There are many, many other people who have also been with us every step of the way. Doug Todd, Eddie and Michelle Schapira, Wendy Warden, Kim and John Riggins... just to name a few!

Mike posted a few nights ago that he was "amazed by the love and charity being poured out upon my family through these trying times.... Honestly I have no clue how to respond to it all". Other than saying Thank You.... I have to agree with him! The community that has surrounded us, this huge body of individuals that have supported us these last few weeks is unlike anything we've ever experienced.

We have been blessed!