Has it really only been three days since my last post??? It feels like an eternity! I am grateful, more than ever, for your continued love and support this week! I feel strength from your prayers and appreciate that very much! Sometimes I feel like this strength alone is what is sustaining me during some hard times.
So, to start with the good news- Matthew's heart catheterization went much better than I had anticipated in terms of handling the procedure. Dr. Gray was done in a mere hour and fifteen minutes! Matt and I were shocked when the cath lab pager went off. We found out his pressures looked good and he handled things without coding this time-- such a relief!!
I knew something was wrong when the entire transplant team was sitting in the cath lab office waiting for us when we got there. I think the first words out of my mouth when I saw Matthew's cardiologist (Dr. Everitt) was "oh no!!" Not, that I wasn't glad to see her- I love that woman, it is just not the normal post-cath routine. Dr. Gray and Dr. Everitt then told us that Matthew's coronary arteries looked "ratty." They found significant narrowing of multiple coronary arteries. Matthew's left heart cath in April of this year showed no signs of CAD. So he has an acute development of the disease and we don't know how quickly it will continue to progress. Coronary artery disease is the number one killer in transplant patients 1 year out from transplant. There is not really a good treatment or cure for it. They have started Matthew on three new medications to try to help with CAD. One of the meds he started is Aspirin to thin his blood. We have come full circle, and once again Matthew is at risk for sudden death caused by a heart attack. These past few days have been really difficult for me and Matt to process and comprehend.
The silver lining in all of this is that cardiology is going to let our family go on our Make-A-Wish trip to Disneyworld to let Matthew meet Lightning Mcqueen. For all of you who know Matthew really well, you know how big of a treat this will be. We did not tell our children about this trip because honestly, with all of the problems and concerns we've had with Matthew, we didn't think going on this trip would be a reality. When Dr. Everitt told us the bad news on Monday I tearfully asked "well, can we at least take him on his trip to Disneyworld then?" This week we are focusing all of our energy on getting excited about our trip. We are trying not to worry about the "what if's" and the "what are we going to do's" this week. It is so fun to watch the kids giggle and talk about all the exciting things they will get to see and do while we are there. I cannot wait to leave our worries in Utah and get away with the family for an entire week!
The day after we get home, Matthew will be admitted to the CICU to undergo plasmapheresis. Basically, it's like dialysis. They spin Matthew's blood to separate the plasma from the antibodies that are contributing to the CAD problem and then they give Matthew his plasma back. It's a long shot, but hey, miracles have happened in Matthew's life before- why not now?? Transplant plans to have him repeat his heart catheterization in a month to see if the treatment helped slow or maybe reverse the damage done to the coronary arteries. If this is the case, we will wait and watch him very closely. If it has not improved or if things have gotten worse, we will begin the process of re-listing him for another transplant-if that's what we decide to do.
I have heard questions like "How did this happen?" or "wasn't the donor heart perfect?" Well, before Matthew's diagnosis I used to think that coronary artery disease was what old men got when they ate too many cheeseburgers and had high cholesterol. This is not the case in transplant recipients. Because of his donor specific antibody rejection and his ongoing cellular and vascular rejection this disease in Matthew has developed. He did have a perfect heart given to him which was an amazing gift for which we are grateful for daily. This is nobody's fault! Matthew has received fantastic care. We are so thankful for the many doctor's and nurses who are willing to care for him and sacrafice their time and so much of their energy in trying to help him. Let's face it- luck has never been on Matthew's side. He is the sweetest, most wonderful three year old you will EVER meet. Yet, he has had to deal with so much more than any human being I have ever known. He has touched the lives of many, and will continue to teach us lessons about life and how to gracefully deal with really hard things. I love this little man with my whole heart.
This is not a farewell speech!! Matt and I will continue to fight for Matthew until the Lord decides to call him home. It is not our decision, it is the Lord's. I ask that you continue to pray for our entire family and those involved in Matthew's medical care. We so need the strength that can only come from the faith of others and the power of fasting and prayer.
So, those are our worries for another day. Today, and the rest of this week, we are a normal family getting excited to enjoy an amazing get away together. I will cherish EVERY moment of the next week.