Wednesday, February 1, 2012

Hurry Up and Wait

Here we go... it's official- Matthew is on the heart transplant list again!! Since my last post things have been crazy busy! Once we did more bloodwork and testing we discovered that Matthew had a false positive read for the CMV virus the first time he was tested. What a HUGE relief!! This meant that there would be no set backs or delays in the process to re-list Matthew. I had two trips to PCMC last week and one appointment with Matthew's pediatrician. We got all the meetings completed, bloodwork done, and papers signed. We got word yesterday that our insurance approved Matthew and that he is now officially on the list as a status two.

Why is this so exciting? I keep asking myself that today! He seems healthy. He's definitely happy. I remember the last transplant all too clearly. If only his outside appearance could tell the whole story! I remember thinking similar thoughts two years ago. I was skeptical about the whole transplant thing. We got "the call" 3 1/2 weeks after his listing. Driving to the hospital that night for surgery was one of the hardest things I've ever had to do. Come to find out, after the transplant surgery, Matthew's heart was much worse than we expected. The surgeon said Matthew's heart was really ischemic probably from the heart attacks he'd most likely been having. The surgeon said that Matthew wouldn't have had much more time without a new heart. And so with all of that fresh on my mind, we wait. I know it's the right thing to do. It just doesn't make any of this easier!

Having your son on the heart transplant list is a wierd thing. I've never felt so much conflict of emotion. Here I am every day and night praying for a miracle for my own son. Immediately after asking for a miracle, I feel so much guilt. Guilt because I know that in order for Matthew to experience a miracle, some other mother has to experience heartache. I really struggled with this after Matthew's last transplant. In the end, I guess I have realized more than ever that God's will will be done. I'm not in control- God is! What ever is meant to be will be. Coming to terms with that is a bittersweet realization. It's hard to apply that principle to your own son's life.

A lot of people ask how the transplant process works. The country is divided into regions depending on distance. Time is of the essence in the transplant world. Utah is in Region 1 with California, Nevada, Arizona,& New Mexico. Each transplant candidate is given a status. 1A being a child in the hospital on an IV or some life saving device, 1B was Matthew's status last time (he was a failure to thrive-- his gastric tube and night time nutrition for the past 18 months has helped his "thriving" quite a bit :)) then there's a status 2- Matthew's status. Matthew is also O type blood which is the universal donor, but not the universal recipient. He has to get an O heart. Also, he has a lot of antibodies we are dealing with now that we were not dealing with before. We have been told that Matthew is only eligible for 33% of the hearts within his blood type based on his antibodies. To say the least, we are not anticipating a 3 1/2 week wait this time. We are thinking he will be on the list for awhile.

Anyhow, onto brighter topics. Matthew turned 4!!!!! Every birthday we celebrate with Matthew feels like a huge success to me! Thank you- so many of you who were so wonderful to him on his birthday. Matthew definitely felt the love of so many that day. Matthew wanted a bunk bed for his birthday. You see, Josh and Luke have been sharing Luke's bunk bed for awhile. The rule in our house has always been that you have to be four before you can have a "sleepover." Matthew wanted a bunk bed to sleep 5- so that all of us could sleep in Matthew's room on sleepover nights. Because they don't make bunkbeds to sleep five (and Matthew's room is way too small for that anyway :)), we found a bunk bed trundle bed that sleeps three- perfect to fit both of his brothers and himself. Matthew has been SO happy hosting sleepovers every night for any brother who is up for it. I love to watch Matthew's relationship with his brothers develop. Matthew and Luke have become good little buddies.

So, life is good. We continue to enjoy each day and every moment as a family. Joshua's school class is participating in a "media fast" this month. Our entire family is not suppose to watch tv, movies, listen to music other than classical music, do facebook or social networking, or play any gaming device. I guess blogging might be considered social networking-- oops! I consider it more of journaling. Oh, well! Anyhow, today was the first day. It's a blessing to remove some of these distractions from our home so that we can enjoy quality time together. I am loving it already- the timing couldn't be better. So, unless something BIG happens, I probably won't blog until March. We love you all and appreciate your continued support.


  1. What a relief that he is on the list again! Well, I don't know if relief is the right word, but I am so glad that he's eligible for one right away since he needs it. We'll be praying for your family, as always. It's so nice hearing more about the family, and about how Matthew and his brothers are together. I love that he wanted a bunk bed for his birthday! SO cute! Hope you have a great couple of months without TV. What a great idea! I'll miss your blogging though! Good luck with everything.

  2. I love hearing about the brother slumber parties. So happy he celebrated the big 4 birthday! We are praying for you!