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For I Know the Plans I Have For You Jeremiah 29:11
We have all joined Matt at different times on his journey. As his mom I have described it as his mission. When Matt was diagnosed with his heart condition, Steve and I along with family and friends were devastated. Personally, I grieved the loss of the child born to us and began to look at Matt’s future through a very different lens….the one I knew more as a nurse rather than a new mom. Little did we know that very soon we would learn of Matt’s tenacity, fight, stubborness, and eventually faith that have lead him through these challenges along with millions of prayers.
There have been surgeries we have sent him to not knowing if he would survive, procedures where results would literally change his life, and hospitalizations that couldn’t be measured by days, but only by his steps to recovery. Matt defied the odds many times (I choose to call those miracles), survived, and gradually I discovered the meaning of his condition. You might expect that meaning to be indescribable, but it’s very simple to put in words: God put Matt on this earth to embody the power of prayer, and teach those who have cared for him how to save more lives. People have prayed for Matt who pray often, very little, or not at all. Complete strangers have prayed for Matt. Doctors and nurses have said “we’re not sure how this worked out”. He has demonstrated to all the grace of God.
For those of you needing an explanation of Matt’s defect; it is called single ventricle with transposition of the great vessels. That means that Matt was born without the wall separating the two lower chambers (ventricles) of his heart. Also the two main arteries leaving the heart, one (the pulmonary artery) sending blood to the lungs to get oxygen, and the other (the aorta) that sends oxygenated blood pumped from the heart to the body; are switched. The result of this plumbing failure is less oxygen being sent to the body from the heart. The heart has to work harder to compensate and eventually starts to fail from the extra work. Matt had several surgeries starting when he was 4 months old, then at age three, and again at age 14. The last surgery required placement of a pacemaker because the part of his heart where the electrical system (nerve tissue that generates the heart beat) had become non-functional. About 5 years ago, one of the leads of his pacemaker broke. A new pacemaker was placed but with great difficulty since the wires could not be placed in the heart due to scarring from his previous surgeries. The wires were placed on top of his heart instead. This placement requires more battery power to generate a heartbeat, and since Matt is nearly 100% dependent on his pacemaker; he burned through batteries about once a year, rather than the usual rate of about every 5 years. This situation lead to the development of a hybrid pacemaker (one of a kind) developed by a team in Switzerland. Matt got that pacemaker last spring and it has worked well for him since. Matt’s heart failure has now progressed to the point where surgeries (more re-plumbing) and changing medications are no longer options. He has maxed out both strategies.
Please keep praying. Everyone has cared for each member of our family on so many levels, but prayer is what will sustain Matt and all of us. I know you will be there for the highs and the lows. You don’t need to be present for us feel the strength that each of you sends.
At one time, when I was especially low and feeling hopeless; I happened to be shopping for birthday cards. Something made me look around and I saw this plaque saying “Trust in the Lord with all your heart, and rely not on your own understanding.” I paused and realized that all I knew about hearts from the years I have spent in the field needed to be put aside, and my faith reappeared. Guess what? Whenever I get trapped in that amount of doubt; God literally puts that sign back in front of me. I found it again when I was Christmas shopping, and finally caught on and bought it! Here is the scripture reading in its entirety. I hope it brings all of you the comfort and meaning that it brings me:
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight.
It’s been awhile since I’ve posted but I’m saying that is a good thing since Matt has been doing incredibly well!! In the medical world, often times no news is good news :)
Today marks the one year anniversary of Matt’s transplant!! One year..... wow! It has been an absolutely joy to watch Matt embrace his second chance at life over the last year. His gratitude and grace shines while he creates the life that he once questioned he would have. We are forever blessed and grateful.
Over the past week emotions have come and gone as we remember what we embarked on not that long ago. The phone call, the questions, the unknown, and the wait. 9 months... 266 days...Tearing at each of us was the reality of something we had all waited Matt’s entire life for right before our eyes, and now it was all in Gods hands. Like my mom says, in the end you give it to god. Answered prayers and the support of all of you are how we have all gotten to where we are today and we are so thankful for each of you.
One thing we talked about a lot this week was Matt’s donor and his or her family. While we celebrate the first year of a new life, another will recognize the first anniversary of the loss of a loved one. We are forever indebted to the selfless donor and donor family for their gracious gift, and we pray one day to thank them in person. Until that day, we will hold Matt’s donor in our hearts. We pray for strength and healing over their family and friends and ask you to please do the same. As we celebrate, they grieve. As we look forward, they reflect on memories. Take a moment to recognize the true gift of life and how precious you are. Happy one year Matt! We cannot wait to see what year two brings for you!! ❤️933 ❤️
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