McKinley! Oh, this girl! I instantly fell in love with her bouncing blonde curls and her “I own this place” attitude. She excitedly walked into the room where I was visiting one of her buddies in the heart unit. Her parents came back just before I had to leave and I was able to meet this cutie that I had heard so much about. She was everything I imagined. Rainy Days Foundation had put together a little gift for her and she ripped into it and hugged the little soft lamb we gave her, really wanting nothing to do with anyone else! I could tell she was a fighter and she really did have everyone wrapped around her finger! She refused to take a picture with me, but I knew she had better things to do, so I got one with her mom, Ruth! It didn’t take long for me to get close to Ruth. We kept in touch and soon after we met, becoming lifelong friends.
I wanted to honor McKinley and her story today, so I asked Ruth to tell it in her words. Her story is as follows:
“I want to give a little back story about McKinley that most people don’t know…
Brian and I have struggled with infertility. We tried several fertility treatments and the doctor informed us that if we didn’t get pregnant with McKinley’s brother Trooper the last month of the treatment we would have to do IVF. Thank goodness we got pregnant that month and avoided it. With our struggles with infertility you can imagine how surprised we were when we found out I was pregnant with McKinley, especially since we already knew Brian’s military unit was getting deployed. It was never our plan to get pregnant let alone while Brian was leaving the country! I have extreme Hyperemesis Garvidarum while pregnant. Not only was I on a lot of medications during this pregnancy, but I also had to go on IV’s and a nasojejunal feeding tube! It was coming down to the last couple weeks and I was so worried about Brian leaving with how sick i was. Luckily a few days before he left I started to get better. I was able to come off the NJ feeding tube.
I did have to go on bedrest at 26 weeks because she was trying to come early! However, with more medicine and strict instructions I was able to deliver McKinley on February 22, 2016, full term! Brian couldn’t be there, of course, but we were able to Skype him so he could still be apart of the birth.
When McKinley was born the doctor told me she had 3 holes in her heart one called VSD, (Ventricular Septal Defect,) which would probably need surgery depending on how big the hole was, and the other two were fairly normal and would close on their own pretty quickly. As you can imagine hearing this news, having my husband overseas as well as having my other children to take care of along with this new baby girl, was not something I was wanting to hear. We saw a pediatric cardiac doctor and after some testing he was fairly confident that the VSD would close on it’s own and he wanted us to follow up with him on McKinley’s first birthday to make sure things were ok.
A year passed and at her one year checkup the pediatrician said he couldn’t hear the VSD anymore. I was relieved and never ended up making the follow up appointment with the pediatric cardiologist. I kick myself all the time that I didn’t. I wonder if I did if we could have seen something to prevent everything that happened with McKinley this last year.
A few months passed. In the second week of October 2017, McKinley came down with the stomach bug. It literally kept cycling through the family (minus Brian, who was home at this point,) most effecting McKinley, Trooper and Kylie their older sister…so only three out of the four kids. It was exhausting. Someone was sick and I was at the doctor’s office almost every week for what seemed like an eternity! At first they said we had the flu and it just kept going through the family. I isolated and cloroxed using and ionizer to help get rid of the sickness. Nothing was working! The doctor said he thought we were picking up different strains of the flu and then it cycled through the family. Deep down I knew something wasn’t right, but I didn’t know what was wrong or how to fix it. It just wasn’t normal with how sick everyone was.
A little after Mckinley’s 2nd Birthday she started getting sicker. On March 8, 2018 I took her to the doctor again. She stopped eating and drinking anything. They prescribed her Zofran to help her keep food and drinks down. She wouldn’t take it. So I went back that same day and they prescribed an oral liquid form of Zofran. She spit that one out. As the day went on I got more and more worried. I called the nurse several times, but she made it sound like I was worrying over nothing. Deep down I knew something was wrong. Brian was once again gone on AT orders with the military. I called him and we agreed that it was best to take her to the ER right away.
When we got to the ER they gave her a whole bag of IV fluids and she didn’t urinate. At that point she was very uncomfortable and screaming in pain. Something was very wrong with my baby. The doctor came in the room to discharge us, but before he did he asked if I thought something else was wrong. Even doctors understand that mother’s intuition is a very powerful thing. At that moment I had the feeling to push on her stomach so I did and she moaned and said hurt tummy hurt. He asked if I felt like something else was wrong besides a tummy ache and I said, ‘YES!’ He said he wanted to do a CT scan to see if she had appendicitis. All I could think while we were doing the test is, ‘What if she needed to have her appendix out? What on Earth would I do with the other three kids while she was in surgery?’ Little did I know we had bigger problems a head…
After Mckinley’s CT test the doctor said that there was a lot of fluid in Mckinley’s stomach and behind her heart. He didn’t know why and said we needed to go to Primary Children’s Hospital for further testing. At this time Mckinley’s oxygen levels were dropping and they had to put her on a nasal cannula and transport her by ambulance. By the time we got up to Primary’s, McKinley had no control over her limbs. Her arms and legs were so floppy is the only way I know how to explain it. They rushed us in and 10 plus people started running several test on Mckinley. They tried to have her sit up to do an x-ray of her chest and she couldn’t manage to do that on her own.
They had to up her oxygen from a nasal cannula to a CPAP to help give her more. She was declining rapidly. After several test were done one doctor came over to me asking if I knew what the results were. I said, “No!” He told me Mckinley’s heart is very enlarged and they were going to have to admit her to the cardiac ICU unit.
We were greeted in the CICU by a team of 15 plus more doctors all moving rapidly and asking a million questions. I have never been so scared in my life before. I had no idea what was going on. I didn’t understand why her heart was so enlarged. I couldn’t even grasp what all this even meant! I called my sister and they finally let her come be with me.
This is when I learned McKinley was going to stay at least a week and it was also the first time I heard the words possible heart transplant. My own heart not only broke, but completely shattered. As soon as we heard that news, Brian was able to get released from his active orders and came immediatly to the hospital. The night of March 9th they had to put McKinley on the ventilator. After Mckinley was ventilated we found out she was not only going into severe heart failure but also acute kidney failure. The next few weeks seemed to be a battle of many things balancing fluids, medications, and trying to see if her heart was strong enough to come off the ventilator. Which since her heart was so sick and enlarged she was never able to pass the test to come off of the ventilator.
This brings us to the next stage of Mckinley’s journey. McKinley went into the catheter lab to have a procedure to see what the pressures were in her heart. They also took a biopsy of her heart tissue to see if it was inflamed. If so they can test the sample to see what kind of virus caused the inflammation. Even though the results of the biopsy showed Mckinley’s heart failure was caused by a virus called Parvo B19. It wasn’t an enlarged heart from birth after all. It didn’t change the fact that it was still very enlarged and not squeezing correctly to get the blood to the rest of her organs. Her heart was still so sick and wasn’t getting better. The team informed us then that Mckinley’s only option was to have open heart surgery.
On March 26th McKinley had her first surgery to have an external heart device put in to help off load the heart. Without this device McKinley would never be able to get off of the ventilator. Both Brian and I continued to be so heartbroken knowing that would be the route for our once healthy girl. Going on the Berlin LVAD (left ventricular assist device) is usually a bridge to transplant. After hearing more about the transplant route, Brian and I felt like it wasn’t the right path for McKinley. We felt very strongly that she needed more time for her heart to heal. We fought so hard for the doctors to keep giving McKinley more time. We asked them to list her as status 7 on the Transplant list (which means ineligible for a heart offer.)
The first part of April McKinley had an emergency LVAD pump change due to a large blood clot forming in the pump. Being on the LVAD makes you very high risk for stroke due to blood clots. Shortly after that pump change we found out McKinley suffered a mild stroke. Since she couldn’t have a MRI, (due to the big metal ikus which is attached to the LVSD pump,) to find out more information about the stroke. The doctors figure it happened sometime while McKinley was on the LVAD. Thankfully it was very mild and ended up pulling back, which is a good sign.
For the next while we were able to see Mckinley’s spunky attitude slowly come back. She was becoming very active which earned her a ticket out of CICU and up to the 3rd floor!
Mckinley’s appearance looked so good but the results of her test still showed no improvement. The doctors were starting to get more hesitant giving McKinley more time without listing her for a heart transplant. One of the care conferences we asked if there was any other options for our daughter. They brought up this experimental medicine that has been very successful in the adult heart failure community. We all agreed to try this medication. They have never used this medicine at Primary’s before so they had to call around at other hospitals that are more familiar using this medication and figure out the correct dose for her.
We were very hopeful that this medication would be what she needed to start healing. After being on this medicine for 3 weeks we did another Echo and it still showed no improvement. We were sad that we didn’t get the results we were hoping for. Over the next couple weeks McKinley had several heart issues VTACH and bigeminy. One of her heart failure doctor really insisted we list her for heart transplant status 1A so McKinley had another option since her heart wasn’t improving. The risk for the strokes get higher the longer your on it. They were really get concerned for McKinley. Brian and I prayed about it and even though we felt like McKinley still need more time to heal we agreed to have them list her at Status 1A highest level to be eligible to receive a heart offer.
McKinley was on status 1A for a little over a week and had a few offers that the team turned down. She came down with a bad respiratory sickness which made her ineligible to receive a heart offer so they had to put her back to the status 7. Of course Brian and I were ok with that. I even told the doctor we are always ok being status 7. She laughed and said, “Oh yes, I forget you guys like status 7!”
During this time they did another Echo and found that McKinley heart made improvement! The size of her heart came down and her squeeze was stronger. They said if her heart continues to heal we could talk about McKinley getting explanted, (the surgery to have the LVAD removed and keeping your own heart.) I have never been so excited to hear such good news. Over the next month Mckinley’s heart continued to heal!!! The doctors started doing research and reaching out to fellow medical colleagues to find out information about this surgery. It has never been done at Primary’s before.
She ran into another bump in the road and had to have surgery to remove scar tissue, (caused by the ventilator she was on for three weeks,) which was restricting her vocal cords and making it very difficult for her to breathe. It was so hard to hear her wheezing and gasping for breath. Thankfully, that surgery went extremely well! She didn’t need any follow up surgeries which is truly a miracle they said.
As the month went on the talk of McKinley being able to be ex-planted became more of a reality. We started discussing the ween down trail to see if her heart could handle the extra pressures. It was the most terrifying and successful couple weeks! McKinley was always borderline which made it hard for them to give us a definite yes. Over time they decided that Mckinley could come off of the LVAD.
It was very nerve wracking to prepare for a surgery that the doctor had never done before. We put it in God’s hands. We had faith that if McKinley was supposed come off the LVAD and God would see it through… and He did! McKinley was ex-planted on August 16th 2018. She made history at Primary Children’s Hospital in Salt Lake City Utah and even made the news! She was able to come home on HER OWN HEART August 27th 2018 on the same fire truck her dad came home from his 11 month deployment 2 years earlier!!!
McKinley fought a long hard battle to keep her heart and she handled her situation extremely well. She has inspired me in so many ways. I hope when faced with a challenging time. I can handle things as well as McKinley did.
My biggest thing I want people to understand from Mckinley’s journey is what a virus can do. Usually when you go to the doctor and they say it’s just a virus they make it sound like its not a big deal. I want people to know viruses are a very big deal. It put my daughter in severe heart failure and almost had a heart transplant.
In the future I would love to see the doctors do more test to prevent this type of situation McKinley had. If they could have caught it earlier on Mckinley wouldn’t be as sick as she was and they could have given her medicine to help fight off that virus.
I strongly believe due to our infertility it was no mistake that I got pregnant with McKinley. I feel like she was meant to be here and she was meant to pave this new path. Her feisty strong-willed attitude is what they needed to make this new path a possibility. I never want another family to go through what we went through, but if they do I am so grateful that McKinley was strong enough to pave another way for others that have a similar situation and to know there is another option to a heart transplant.”
With tears streaming down my face I want this family to know how much I love them. Their journey has paved the way for so many. I can feel it! McKinley is doing so well and growing so fast. She may never remember all the things she went through in her toddler days, but she will always be reminded how her journey changed the world!
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