Friday, May 21, 2010

Matthew was born with a congenital heart defect known as Hypoplastic right heart with pulmonary atresia. We found out about his condition before he was born and 3 out of 4 different medical centers told us that we should transplant him at birth. Dr. Ilbawi of Chicago IL convinced us that transplant was always an option but that if we could by him 6-10 years with his natural heart that he would be much better off. Well, we got 2 and 1/2 years out of his heart. Since moving to Utah and really since November of 2009 Matthew just hasn't done well. He sleeps most of the day, he doesn't eat, and he hasn't gained any weight for about six months now. He got RSV in January/February of this year and since that time has had to be on ever increasing amounts of Oxygen. We finally convinced his cardiologists that something was wrong (despite a normal echo just six months ago) and had an echo. That was early March. Well the results that we got were not positive. His Pulmonary artery pressures were high because he was in diastolic heart failure. To make it simple, he was in heart failure and fading fast. Their solution was once again to put him on the heart transplant list. We have gone through the necessary steps to do that and about 3 and 1/2 weeks ago he was officially listed for a transplant. This has been a conflict with me because Chicago has been pushing us for better medical management with Bosentan and Sildenafil.

Well much earlier than we anticipated and still to my utter shock, we received a call on Tuesday night May 18, 2010 telling us that they had a "great heart" for us. I am still in shock. I was still grappling with the fact that he was on the transplant list let alone deal with the fact that he now had a heart. As a father, you always want to do what is best for your children. One of the hardest decisions that I have made is telling the transplant coordinator that we wanted the heart. That is where this story kicks off.

We had one hour to get to the hospital. Chrissy and I were both panicking. Luckily our ward had us well prepared. We through together a suitcase, grabbed a sleeping baby and headed to the hospital. We arrived at about 12:30 am Wednesday. It was a kinda "hurry up and wait" type scenario. They drew what seemed to be half of Matthew's blood volume (and reassured us that they would just transfuse him during surgery) and then let us try to get some rest in a loud, crowded Hospital bed. Lest I forget: Larry Curtis (my father-in-law)came to the hospital and helped to give Matthew a blessing. If you ever run into us in person ask about the blessing and we will be happy to tell you about some of the incredible impressions that we had. Needless to say, we waited anxiously for the surgery to start . . . it did at noon.

We waited ... special thanks to all of those who were here, called, taking care of our home, praying, putting Matthew's name on the temple lists etc... We were not alone. One funny thing happened as he was leaving for the OR. The anesthesiologist was pushing a little versed (a sedative) and it was burning through his IV. He asked if I would do it. It still hurt when I did it. I then asked Matthew Jr. if he wanted to do it and he grabbed the iv and just slammed it in. He then reached out his hand for his guardian angel and was taken from us into the OR.

At nine thirty pm his surgeon, Dr. AK Kaza came to speak with us about the surgery and its results.


  1. It is now 10:26pm, Mountain Time. I just heard from Chrissy that Matthew, Jr. is now back from surgery. Let's all raise a toast (i've got my Gatorade) to this brave little man. May his recovery be rapid, but mostly, may it be complete. May his brothers be comforted, and may his parents finally get a little bit of rest.

  2. I can't imagine what you were feeling when you received that phone call. What a brave little guy, and what brave parents. You are in my thoughts and prayers.

  3. Thanks so much for the updates. We added Matthew's name to the Nauvoo temple list. We are thinking of you all and praying for you constantly.