Help recuperate the cost of Air Medical transport

Hi, I’m Kelly, it’s the name my parents picked on the day of my birth while they were walking around the hospital after my Mom was induced into labor. They picked it, instead of Emma, the other name they had in mind because it means "Warrior, Brave Warrior, or Warrior Princess", but my brother just calls me "The Beast". After all, no matter what obstacle I'm presented with, I just head into it full force and don't look back. I'm currently in a hospital room on the 4th floor of Stanford Hospital Cardiac Critical Care Unit hoping I can get well enough to qualify for a Heart and Liver Transplant before my heart gives up.

So let me tell you the story of how I got here.

Back in March of 1999, on Dr Suess’s birthday, I was born at Overlake Medical Center in Bellevue Washington. The day of the great Washington Windstorm of 1999. Right after I was born my Mom and Dad only got a brief glimpse of me before I was rushed off to the PICU where they secured me in a mobile PICU and rushed me to Seattle Children's Hospital. The ambulance was the last vehicle across the bridge that night for two days as they were closing it as we were traveling across it with the spray from the waves hitting us as we were crossing.

Of course, this was not a surprise for Mom and Dad, 8 months earlier, while my Mom was getting a fetal echocardiogram they discovered that I had a birth defect called Hypoplastic Left Heart Syndrome. This was a surprise as my Mom had the same echo-cardiogram done before my brother was born and they didn't find anything. You ask why my Mom is getting this test on my brother and me, well in '63 she was also born with a heart defect called Tetralogy of Fallot. Different from mine, but still very serious. It was corrected in ‘69 at Stanford by Dr Norman Shumway , the heart transplant pioneer. This gave me a higher chance of having a heart defect than your average child, and I have been anything but average.

I spent the next two months of my life in the pediatric ICU and Children’s Hospital. It seemed like every Tuesday the doctors would come to us with bad news.

The first Tuesday was even days after I was born, I had to have a major open heart surgery called a Norwood procedure which resulted in oxygen-rich and oxygen-poor blood mixing in the heart and thus I became a Blue Baby as I always had a bluish tint to my skin. Of course, this meant that if I started to cry my blood saturation level (O2) would go down, or desatting, but if I got too happy I would get hyperventilated because my O2 level was too high. So everyone had to try and keep me in a central state of Zen, where I wasn’t too sad and not too happy.

The next Tuesday it was Malrotation of the bowels, if left untreated my bowels would twist and cause an obstruction. The fix for this was to make an incision just below my rib cage and pull out my intestines, rotate them 90 degrees, and place them back into my abdomen, this would cause them to scar to my insides which would keep them from moving around and strangulating. It would also cause my appendix to be in a different place than it would normally be found and so if I got appendicitis they would have trouble diagnosing it because it wouldn’t be in the normal spot that it usually resides. So as a bonus to the operation, they removed it.

At 4 weeks the next thing was Hypothyroidism, I had to take the smallest dose of Synthroid, to wake up my thyroid and have it send the appropriate hormones to the rest of my body. This was of course on a Tuesday.

Then on a day that was not a Tuesday, a team of geneticists came to us and diagnosed me with Kabuki Syndrome . For years, for various personal reasons, my Mom and Dad didn’t really believe in the diagnoses, one being that it didn’t happen on a Tuesday. I know parents can be strange. While I have been here at Stanford they have confirmed with genetic tests, something they didn’t have for it back in the day, that I in fact have Kabuki Syndrome.

After two months in the hospital, I went home. With me came many medications, an ng tube, and a food pump, that, little did I know, I would be on for the next five years. Transitioning from breast milk my Mom pumped for me for a year and a half, to food my parents would grind up in a two-horsepower Vitamix blender. It would consist of whatever the family had for dinner, vitamins, prune juice, and olive oil. Back then the Web wasn't a big thing, and most of the information they would get about tube feeding was from a listserv the “gtubelist.”

In December of '99, I had my second open heart surgery, a Bidirectional Bilateral Glenn . This was the first step to prepare me to get the Fontan procedure, which I would get, not once, but twice in 2006. We’ll talk about the later. Life was pretty much normal after that, going out to dinner, celebrating holidays, visiting relatives, and watching movies. But then in 2001, after 9/11, decided to sell the house, to recover some cash because of the economy tanking, and move back to Tucson, to be close to relatives.

After we moved to Tucson, I was busy trying to gain weight so I could get my Fontan procedure. At the time I was still being tube fed, although I had switched from an NG tube to a Bard, which was a port that went directly into my stomach. My parents would put me in my high chair at mealtime, and put whatever they were eating on the tray in front of me, to try and get me to eat. But apparently, I would rather breathe and eat. That would change when I was 5 and was about to go to kindergarten. Suddenly during one of our mealtimes, I just decided to do what everyone else was doing and started eating by myself. Everyone at the table was extra super surprised, but they just acted as if this was something that happened all the time, that was because if they made a big deal about it I might freak out and not do it anymore, and they had been waiting five long years for this to happen.

The next operation slated was the Fontan procedure. According to the doctors I needed to be at least 80 pounds to have it, so I was over 6 years old, 3 to 4 years older than most Fontan kids, before I had it. After the surgery, I was doing fine, but not quite acting like a standard post-op Fontan patient. My chest wound was not healing, so the doctors decided to go back in and see what was wrong. They found out that I had developed so much Collateral circulation in my lower abdomen because my femoral arteries and veins had been occluded from line placement in my previous surgeries, that the Fontan that they put in was too large in diameter, and the blood didn’t flow fast enough, so it clotted off. I was stitched back up temporarily, and rushed back to the PICU still under anesthesia, while the doctors figured out what to do. Ultimately they decided to clear out the clotting in my inferior vena cava and replace my Fontan with a smaller diameter one that would have a faster flow rate and thus not clot. It worked, and five weeks after entering the hospital I was discharged just before Halloween, one of my favorite holidays.

Life for the next decade or so was pretty normal, going to school, making friends, going out to movies. But occasionally life has a way of knocking you for a loop, in June of 2010, two days before we were going to visit my grandparents in Hawaii, I found my Mom in her home office on the floor. I quick, told my Dad, and he called 911, he did CPR on her while waiting for EMTs to come, but she had been gone too long and they couldn't resuscitate her. We later figured out that while she was working on her computer, she had had some sort of cardiac event, and fell out of her chair and onto the floor. Later that morning, after my Dad told bunches of people, police, coroner, and grief counselors about what happened, he had to call my Grandpa about my Mom, his daughter. He later said it was the hardest call he ever had to make in his life.

My parents had a plan that after we came back from Hawaii to visit my Grandparents my Dad would get a part-time job, and Mom already had one working for a visual therapist, and come out of retirement into semi-retirement, sell the house, get a smaller one, and we would live that way until the got to retirement age. My Mom passing away sort of made those plans not possible. He had to sell the house as fast as he could, and since the economy was so bad, lost most of his retirement money fixing up the house and paying the mortgage. He had no job, and the only money we had after selling the house was part of the down payment originally paid when buying the house. We moved into a rental house near my Uncle. My brother and I both went to school and graduated. Around 2013 I had a stent put in my Fontan to straighten it out, so it would flow better.

Fast forward to January 2024, my weight suddenly shoots up 5 pounds, and my O2 levels drop from 90% to 83%, normal for a Fontan patient is 85-90 without O2, and I couldn't go up the stairs without getting out of breath. Off to the ER and we found out I had my first heart failure event, fluid was building up around my heart, congestive heart failure, and putting pressure on my heart so it couldn't beat. I spent about a week in the hospital, taking medications to remove the fluid from my body and thin my blood so it wouldn't clot in my lungs. I was discharged, with a new heart medication, diuretics, and the other medications that I was already taking. Unfortunately, the heart medication was hard on my kidneys, so after a few months I had to start seeing a nephrologist because I was starting to have kidney problems.

Fast forward even further, in February 2024, I had a bad headache in the back of my head for about 5 days, and my blood pressure was very low. My Dad called the doctor and they said to bring me into the ER. There I found out I had a very low blood count and my kidneys were failing. I spent the next month in the hospital with them trying to get my kidneys to work, my heart worked better, but ended up on IV drip heart medications and a machine called a CRRT to take over for my kidneys. It is a type of dialysis machine that won’t drastically lower my blood pressure like a regular one would, which would kill me. The only problem is I have to be on it 24/7, and it’s the size of a small ATM, and I'm on 15 liters of O2. I would not be able to last long this way, so one of my doctors contacted a doctor friend of his at Stanford, to see if they would be able to evaluate me for a Heart and Liver transplant and guess what one day before my birthday, they sent an email and said they would, but I would have to fly from Arizona to there, when they had a room available at the hospital. Surprise, surprise the insurance company would not pay for the flight out, said it was not an emergency. So, my Dad had to shell out 28,800 dollars to get me there. So that is why I’m putting up the GoFundMe page, so my Dad can get back that money, it was part of his retirement savings to help supplement his Social Security Benefits, and he was more than willing to part with it to give me a chance at an extra few years of life. So please give whatever you can so we can put that money to better use, like being able to live in California while I recuperate from the transplant.

Thank You for listening, and Thank You for any and all of your donations.