Friday, September 19, 2008

Happy Heart Birthday!

Well, here we are – one whole year post-transplant and officially out of the most critical period. The mom of one of our ICU friends, Karis, has been documenting her birth/heart story on her blog the last few days, and it inspired me to write out a little more detailed synopsis of at least Keegan’s transplant details in one entry. I’ve been pretty emotional just anticipating today. This is Keegan’s true birthday in my mind. It is a day filled with hope, but also with new fears for the future. Keegan received the gift of new life on this day. I think Gray and I received so much more. We were given the opportunity to raise our son, to watch him grow, and to love him more than we ever thought we could. Of course, we loved him before he was even born, but on this day a year ago, we could begin to hope that we would actually have a life with him as a family. More than just a heart or renewed health…this heart transplant, this selfless gift of a family in the midst of their grief allowed our family to be. That is a gift that “thank you” will never be able to encompass. Here is what I can remember from just one short year ago. The heart has a way of making some of the roughest parts become a little fuzzy, if only to spare you from having to relive them. Most of this you know from other posts, maybe some of it you don’t. For what it’s worth…

Keegan’s congenital heart defect, Tetralogy of Fallot (TOF), does not, in and of itself, result in or require a heart transplant. It is considered a “fixable” defect. Keegan’s case was so severe that he was in effect crashing from the second he was born, and it was a stretch to postpone his first surgery to a little over 24 hours after birth, just so I could see him first. What should have been no more than 5 hours of surgery turned slowly into 10. Keegan’s lungs would not oxygenate his blood well enough to allow him to come off of bypass, and he was placed on ECMO. We would later learn that during an echo in the OR the surgeons noticed a “black spot” on the muscle wall separating the bottom chambers of his heart. They didn’t know what it might be, so they didn’t know what that spot would later do. Everyone was fairly confident Keegan’s lungs just needed a bit of rest after such a stressful start.

A standard ECMO precaution is to begin the process of being listed for organ transplantation immediately. The longest any child has ever stayed on ECMO is 33 days. The listing process takes 5 days or more, so it’s better to be ready for listing than have to do it later. The following Monday (5 days after birth), Keegan was listed for transplant, and the cardiac team prepared to try to wean Keegan off of ECMO. At the time, everyone was more concerned that he would just need more time on ECMO to heal and may not come completely off that day. Gray, my mom, and I waited in the CVICU waiting room putting birth announcements in envelopes as the minutes ticked on into hours. Dr. Guleserian, the transplant doctor, came to the door after almost 3 hours and asked Gray and I to come back to a conference room. There she told us that something had gone very wrong, that they never attempted the ECMO wean. The echo done prior to the wean showed that the “black spot” on his septal wall must have been a hematoma (like a bruise) that bled out with the massive amounts of blood thinners required for ECMO. Since his heart had not been beating, just resting, blood had completely filled it and obliterated the majority of his heart structure. There was no way Keegan could survive off of ECMO without a heart transplant.

Now, Gray and I didn’t know much at that point about organ transplantation. The team threw an enormous amount of statistics at us – quality of life vs. quantity, life expectancy of 18 years at present (the longer the first transplant lives, the longer the expectancy), rejection rates, numbers of people on the list, how far of a radius an organ could come from, how he is rated on the list. The one thing we knew was that people waited years, not days for a heart. Keegan would be the smallest and youngest in Texas on the list, and his size limited the size of a donor heart. More importantly, we had two unknowns. Could his lungs support a heart? If they couldn’t, it would be over. And would his kidneys hang on long enough? They were failing more and more each day, and kidney transplants can’t be done until 3 years of age. No one would say it, but their eyes conveyed exactly what we feared – the likelihood of finding a heart for Keegan was next to none.

We survived the next day on sheer adrenaline. We met with Dr. Leonard for almost 3 hours going over every minute of Keegan’s life since he had been at Children’s. As much as he wanted to take responsibility for Keegan’s condition, we couldn’t let him. He had done everything he could. We made plans for Keegan to be moved to the cath lab on Wednesday to take pictures of his lungs, to see if they were going to function well enough off ECMO. That evening, Gray and I went home. We did laundry; we packed; we paid bills. Then, we cried. We knew that our son would probably never leave the hospital, never sleep in his crib, or play with the toys waiting in his room. We feared more than anything that the first time we were able to hold him would also be the last. The next morning, we resolved that every minute we were in his room, we would be happy. He would never know our fear, never see it in our faces. If this was all he had with us, he would know that he brought us the greatest joy.

When Gray and I got back to the hospital that morning, everyone was busy and tense. We assumed they were just nervous about having to transport him again up to the third floor while on ECMO. Later we would find out that the transplant team knew a heart was available early in the morning. They had decided not to tell us unless his lungs were cleared by the cath. Usually, we had to stay in his room as they left because of the sheer number of people it took to move him. This time, they asked us to ride in the elevator, and when we got to the cath lab doors, everyone stopped and insisted we kiss him. A little odd, but everything in our lives was that way by then. On the way back to the CVICU waiting room, Dr. Leonard passed us, white as a sheet, and barely said a word. He said later that he was merely afraid he would slip out the news. Again, Gray, my mom, and I waited. The cardiologist from cath came out after almost 2 hours with pictures of Keegan’s “beautiful” lungs. We thought that was the end of that.

About 30 minutes later, Dr. Guleserian came to the door. She asked us to come back to the conference room. One thing you learn quickly in the CVICU is that if the surgeons come out to see you, it’s good news. If they ask you to come back to see them, it’s not. All we had ever had was a call to come back, and here we were again. According to Gray and my mom, I began to fall down and refused to go into the conference room; I kept saying that I wouldn’t go back in there. I was finished with bad news. But Gray figured it out when every nurse and doctor was packed into the hallway. They all yelled out that it was good news, that there was a heart for Keegan. I don’t think I could ever put into words what was in my heart at that point. If you could describe the feeling of experiencing a miracle, I suppose it wouldn’t be miraculous. The joy, the gratitude, the feeling of unworthiness. All I wanted was to see Keegan and hold him at that moment.

We began gathering all our family together and called in the parish priest to perform an anointing of the sick and last rites, just in case. Dr. G would have to fly to Houston in the Children’s jet to get the heart. By 8pm, Keegan was in the OR to prepare him to come off ECMO and onto bypass. Until Dr. G arrived with the heart at about 11pm, Dr. Nikiadoh prayed over and sang to Keegan for almost 3 hours in the OR. By midnight, they had stopped his old heart and were preparing for transplant. By a little after 1am, transplant coordinator Susan came out to tell us that the new heart was in, beating away, and was very “snappy.” By almost 3am, they wheeled him around the corner by the CVICU – not with 20 people pulling ECMO, but just him in the little isolet. He was pink and looked beautiful. But the only thing I saw was his chest. It was still open with that “window” over his sternum, and there was the most beautiful thing I had ever seen in my life. His heart was beating. You could see it, right there, beating away all on its own. It was the beginning of a new life.

Of course, there were many more obstacles waiting for his kidneys to wake back up, the swelling, all of his systems on the verge of shutting down after sternal closure, going into SVT when they removed his pacing wires, learning to eat, losing weight. Gray and I had to learn a whole new world of medical knowledge we never wanted to have. I wish I could say that everything was peachy keen afterward, but you do wonder if you have done the right thing, what kind of life you have set your child up to have as a transplanted person. But he wouldn’t have had any life if you hadn’t. You learn that a series of good days doesn’t mean a bad one isn’t around the corner and vice versa. You learn to ride the waves. Many of you have asked where the heart came from – a little boy in Houston born the same day as Keegan who died from SIDS the Monday Keegan was listed for transplant. We have had only one contact with the family, and they have not responded since. That is hard, but it is their choice. I learned through this that grief truly is unique, and you cannot judge.

As I mentioned before, today I am filled with hope for the future but not without fears also. I hope for a future full of completely normal days. I hope for many years watching my son grow, of learning who he is and hoping that he will pay forward the miracles and kindness that have been given to him. I hope that he will be God-fearing and closer to his Lord than I try to be. I hope for the day I see him leave home and become a man, maybe get married and have kids of his own. But there is also the reality of having a son with a heart transplant, who is immune suppressed and prone to rejection, coronary artery disease, and infection. The unknown long-term influences that ECMO and the trauma of his first months have had on him. If I said I didn’t fear that I won’t get to see these milestones in his life, I would be lying. It is easy for outsiders to look at him and think he has never been sick a day in his life. I like to let them. The days that I don’t think of it are the good ones in my opinion. There are moments of overwhelming sorrow for what Keegan has been denied already at such a young age, of complete fear that each day will be the last. But I’m ok with loving him too much that it hurts. Those moments pass in an instant when he smiles at you.

I know this was a bit long-winded, but I felt it was something I needed to do. I hope it provides some insight to our family and friends, but mostly, I hope that one day Keegan will be able to read it and understand what he can’t remember. God gave him life, not once but twice. I thank Him with every breath in my body for loving us enough to let us know and love Keegan. I would live the entire year over every day of my life just to be able to hug and kiss him each day. We love you, Keegan. You are our “little fiery one”, our Bug, our Little Man, our son, and our hearts.