Thursday, June 26, 2014

First Heartiversary

One year ago today was the longest day of my life. My baby boy got the greatest gift and a new chance to live. I don't need to rehash it. You can read about it here if you haven't already. I am amazed every day by the year we've had. Life is really, really good.
In the past year, I have been asked the same question many times. "So, he's good now, right?" I understand completely where the question comes from, but I feel the need to clarify the answer. I always just give the vague answer of "For now, yes." Here is the truth: Christopher is not, nor will he ever be in this life, cured. There's a saying that goes, "Transplant trades one set of problems for another." While this is true, we have never looked back and we would take the set of "problems" that we have now any day over the problems we had pre-transplant. He was dying. He was always blue, his oxygen saturation was never above 80% (which, in addition to not being good for your organs, causes a lot of physical pain), he couldn't roll across the floor without stopping and panting for ten minutes, he was very delayed in his motor development, he was hospitalized for EVERY SINGLE illness he contracted, he had a very poor appetite and was tube fed for most of the time, and he vomited any time he started crying and frequently for no reason at all. The vomiting became so common place for us that we just had towels and containers strategically placed throughout the house. Here he is a few weeks before he received his new heart. You can hear him panting, and he looks very sick.
Since transplant he has learned to walk (and hasn't stopped since), eats like a champ, is a beautiful pink color, and has weathered several illnesses better than I ever imagined he could. He is SO MUCH healthier!
So what are these new problems we've inherited with transplant? Well, to start, Christopher will have to take medications every day for the rest of his life. He was already doing that, but these new meds suppress his immune system so that his body will not attack the heart that is seen by his immune system as a foreign thing. He will get sick more easily than most people and will have to adjust his life accordingly. In addition to this, the meds that he's on are famous for causing kidney damage and cancer. Luckily, he has not had any problems with his kidneys thus far, and the cancer that the drugs can cause is pretty treatable.
Another problem arising from transplant is that a transplanted heart doesn't last as long as a non-transplanted heart. Plain and simple. We've heard that on average they will last from five to ten years, but with newer and better treatments and medications, that statistic is improving. I personally know two young children who have already had to undergo a second heart transplant, but I also personally know two people who have had their transplanted heart for over 20 years. There is really no telling how long it will last, and if and when it does fail, he will need another transplant to survive. Current statistics say that 90% of heart transplant recipients survive to one year post transplant. The number goes down to 75% at five years, and about 50% at 15 years. We remain very hopeful that his heart will last a long time, and that by the time he needs another one, stem cell researchers will have developed a way to grow his own heart. Amazing things are happening in this field. Just watch this video to see what they are already doing!

In order to prevent damage to the heart, we keep a close eye out for any signs of rejection, take vital signs every day, have frequent blood draws to check the levels of his immunosuppressants, and he will have a biopsy every year. These seem like such small things to me to take care of his donated heart.
Those are most of the serious problems associated with transplant. Now for the weird and interesting. Most people don't realize that the heart is innervated, and that when it is transplanted, that nerve, of course, is severed. It's the tenth cranial nerve, called the vagus nerve. This is what sends signals from the brain to the heart saying, "We're exercising now, let's beat harder and faster." Now Christopher's heart can only respond to chemical changes in his blood (adrenaline released from the adrenal glands as part of the parasympathetic nervous system) in order to beat faster and stronger. I have a friend who was a young teenager when she was transplanted and she said it takes her heart about 15 minutes to start beating faster when she exercises, as opposed to the almost immediate response most of us have. While this doesn't cause any real problems, I thought it was interesting. Here is more information on that:

This anniversary is a joyous one for us, but we are keenly aware that for someone else, it is a completely different kind of anniversary. A year ago, someone, somewhere (we still have had no communication from our donor family, although we did write to them) allowed a surgeon to take their child and remove his or her heart.  I think it would be so hard to not be holding my child as he or she took his or her last breath, but these donor families don't get to do that. They hold and kiss their child's still warm body, then say goodbye at the operating room doors. What brave, selfless, and amazing people. There is no way to sufficiently say thank you. The best I can do is enjoy every minute that I have been given with my children. I've been given another year with my boy, and it has been incredible. We will make the most of every day.

Monday, June 9, 2014

Dream Night at the Zoo

Last year at this time I was in the hospital with Christopher and a volunteer came and handed me some tickets to go to the zoo for the annual Dream Night. It's a special event where they close the zoo to everyone except families with critically ill children. Since I had been in the hospital for a week, I needed to spend some time with the girls, so Matt took over for me and I took the girls to the zoo. It was just hours after I had been given the pager and the official letter to let us know that Christopher had been listed for a heart transplant, so I was emotional and shaking, and exhausted from sleeping in a chair. After spending three hours at the zoo, I took the girls home and put them to bed, then I had a bowl of ice cream and a can of Pringles for dinner.
This year was completely different. Since we are part of the Hope Kids organization, we got to go to the dream night again--this time as a whole family. It was so much fun! They had lots of people dressed up in costumes, and I think the kids would have been happy to have gone just for that!
 They were very excited to see Maleficent, but she scared Christopher, so we didn't get him in the picture.
 Superman! He is second only to Mickey Mouse for Christopher. When we walked away from him he got sad and asked to go see him the rest of the night.
 Off to see the giraffes--WAIT! IT'S ELSA AND ANNA!!!!! I swear, I thought Shannon was going to wet herself. Of course, there was a long line to get a picture with these two. As soon as we got in the line Chris started singing "Let it Go!" at the top of his lungs. I think this made their entire night. 
 They were also very excited to see Rapunzel and Belle.
 We finally got to see some animals! This is an Amur leopard, and he was pacing very quickly, so I didn't get a good picture of him. 
 This was at the end of the night and all three kids were still going strong! We rode the carousel, had dinner, went to the splash pad, saw the polar bear, sea lions, seals, the bird show, a monkey, a snow leopard, zebras, elephants, rhinos, and as we were walking out we heard the lion roaring, so we headed over there even though the park was closing. It was too dark for pictures, but he came right up to the window and pawed at the kids. They didn't even flinch! Then he roared several times again. It was amazing!
Thank you, Hope Kids, for another fantastic night!!!

Thursday, June 5, 2014


Last night we got to use this key and Christopher got to make his wish! It was so much fun, and a lot more emotional than I thought it would be.
 We started out by throwing tokens in the wish pond and each of us got to make our own wish. Then we took a tour of the beautiful garden.
 Inside we sat down with the wish makers and talked about our family so that they could get to know us. They asked what our favorite vacation spot was and Matt and I laughed. Shannon said "Idaho!" and Leah said "The river." Yeah, we're pretty exotic. Truth is, we've only taken two vacations as a family. Once to Colorado for a family reunion, and once to Idaho for Thanksgiving.
The actual wish wasn't hard to choose. As soon as we walked in the building, Chris saw this cutout of Mickey and got very excited and started doing the Hot Dog dance. The wish makers all knew that he would love a Disney wish.
We wrote down the top three choices and put them in a capsule. Then it was time to enter the Wishing Place. Here he is using his key!
 This was a really neat round room in a tower with glass tiles on the floor, a water fountain, and color-changing lights. In here we all read our wishes for Christopher (this is where it got emotional) and the kids followed the lights on the floor to place the capsule in a small cone.
 Then they put the small cone on the bigger cone and sent the wishes to the wizard (The cone is the top of the wizard's hat)
 Wish made! The girls were disappointed that they didn't get to actually see the wizard, but they got over it.
 Obviously, the top wish was to go to Disney World to meet Mickey. I can't think of anything Christopher would enjoy more. They are booked for the summer, but we will probably go in December or next summer. We are excited and had such a fun, magical evening. Thank you, Make-a-Wish Utah!