For the month of April, PCHA has been focusing on the theme of National Donate Life Month. In the 7th and final post of our series, Melissa West shares the story of her son Peyton’s journey through a heart transplant.
We were told at 35 weeks pregnant that Peyton would have a heart with only the right side functioning and that this was called Hypoplastic Left Heart Syndrome. There are many variations in the degree of severity. Peyton’s was a 9 out of 10 on the scale of how severe his was. We were given the option to take him home and do nothing, or begin a series of 3 open heart surgeries to get the right side doing all the work as efficiently as possible. The surgeries would need to occur between birth and 5 years old, followed by many follow up procedures, as well as a lifetime of medications. We chose the surgeries.
Peyton struggled through all three and had to have 2 other major surgeries along the way. His first open heart was at 1 day old and the other at about 5 months. The third was right before his 5th birthday. He almost did not make it, and, as a result, sustained brain damage, another life sentence. But our, at the time, now 5 yr old, struggled through, and, heroically, did this every day to relearn every skill from eating, speaking, crawling, toileting and walking all over again. Imagine waking up right before your 5th birthday and having no idea why you can no longer move your body or communicate with your family, but remember what life was like when you could. Peyton is smiles and odd jokes 98% of his life and rarely complains about how he feels.
This past December 29th at age 13, we went in for Peyton’s regular 6 month cardiology appointment, and he thought he was feeling fine. But the doctors told us the right side of his heart, the only side that was functioning, was failing. And we would soon find out that it was failing fast.
By February 3rd, we were admitted until a matching heart was available for transplant. We were told on March 4th Peyton was teetering on the edge and they were running out of options. This was a true reality that he may not make it to transplant… Somehow, by the grace of God, on March 8th, when someone else lost a loved one, we were granted the amazing gift of another chance at life for Peyton. On March 10th Peyton’s surgery was completed, and he has been doing unexpectedly well. But he has a long road ahead. We were ready to leave just two weeks after the transplant, just staying the weekend for one more lab number to increase, when we experienced the first hoop.
Peyton developed a cough, and by Monday night was rushed back to the CICU. He had fluid building up, and though tests showed very low rejection, he visibly was not well. Slowly he started to recoup. After two more rough weeks, we finally got to head to the hotel. We have now been here for two weeks and are learning the new normal of wearing a mask whenever we leave and taking extra germ and hand washing precautions. We have lots of weekly outpatient appointments to check on his heart and therapy to rebuild his strength and skills that were lost during his time of being so sick in the hospital.
He has traded one heart condition for another and a lifetime of medications and autoimmune issues. We know that the first six months is an up and down battle, and the first year even can have a lot of roadblocks. But the alternative would have been much worse, so we are all in. He takes over 40 pills each day to fight rejection and keep his heart and body in working order. He struggled at first, getting nauseated by them, but now he just takes them like a champ and moves on with his day.
This boy is amazing, and most days has had a huge smile and loves to joke. He spends his time loving food right now, because of the steroids he takes, playing video games, and exploring the city in our 9 mile radius of Children’s Hospital, where we must stay for about three months. Thank goodness that radius includes a zoo that he enjoys tremendously.
Peyton knows he has been given multiple chances at life and is so appreciative and determined to make sure that the most recent gift of a whole heart is utilized to the fullest. The small town we live in has been tremendously supportive and helpful in making sure that all of our needs are met while we work to get Peyton in the best shape possible. We have been truly blessed by the outpouring of love and support, as well as a tremendously generous gift of life from the Donor’s family. Without their ability to be so generous during a heart wrenching moment in their life, Peyton wouldn’t be here today, and for that, we are truly grateful.
Melissa West is a married mother of three boys – 8,13 and 16. She has a background in office management and a degree in education. She most recently worked as a Reading Tutor in a middle school setting. During different seasons of life , Melissa has been a stay at home mom, when necessary, as all three of her boys have had major medical issues. She takes her role as a dedicated mother very seriously, but Melissa also enjoys working to be a positive and encouraging example to others going through diffiicult times. She enjoys helping others find their own personal joy, regardless of the current situation. Melissa’s children have taught her that no matter what you are going through today, someone else always has it worse, and she believes everything we experience in our lives can help us grow stronger for whatever comes our way.