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| Isaac |
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At Isaac's two-week checkup, his pediatrician told us that Isaac had a heart murmur, which is fairly common and most babies grow out of it. Isaac was a fussy baby who never really slept well, and was just kind of stoic. He breast-fed well and continued to gain weight and thrive normally. But, we just couldn't shake the feeling that something wasn't right. At his two-month and six-month check up, the murmur was still present, but he was still growing okay. I stopped breastfeeding at 6 months, and that is when it all changed.
When Isaac started bottle-feeding, he began to sweat profusely while he was eating. So much so, he would soak through an entire pillow. His breathing started to change. He would "grunt" while sitting up, and he was becoming increasingly fussy. By his 9-month checkup, we were very concerned. When we asked his doctor about the murmur, this time he got a funny look on his face and said he wanted another doctor to listen to it, as well as an EKG and an x-ray. The other doctor came in and listened with the same look, we did the x-ray (which is a horrible contraption) and the EKG. By the time the EKG was done, we had an appointment set up for an echo that would be on-line with Seattle Children's. This was Thursday, with the echo on the next Tuesday. Isaac's pediatrician called Friday morning at 8 am, "I just want to tell you that I think this is serious, I'll be in touch after the echo." The longest 5 days of my life.
The echo revealed the VSD and the mitral regurgitation. We scheduled a sedated echo the following week, which revealed the severity a little more, and surgery was scheduled for May 16th, 2005. The surgery went off without a hitch and the were able to mostly fix the VSD, but the mitral valve would eventually need to be replaced. Isaac's surgery was on Tuesday morning, he went home on FRIDAY!!!
The following year was a blur of RSV, pneumonia, heart failure, breathing treatments, going from doctor appointments directly to hospital. Finally in March, it was decided he needed to get healthy enough to replace the mitral valve. On May 9th, 2006, Isaac underwent his 2nd open-heart within a year to replace his mitral valve with a prosthetic St. Jude's valve. We were shooting for the largest size possible to allow for his heart to grow larger before replacement. The surgery went great, it was a tight fit, but they did it. His first night went great and the next day they prepared to extubate. I went to the cafeteria to grab some lunch, he would be awake when I returned. I was by myself at the hospital. I wasn't gone 15 minutes when my pager went off, return to NICU 911. By the time I ran all the way through the hospital and back to the NICU, he was being bagged on the way out the door to the cath lab. "Sign permission forms and get some family here", they said.
When they tried to extubate him, his left ventricle went to 10% function and he was on his way to cardiac arrest. From what we understood at that point, the valve was too large and pinching the LV outflow tract causing a narrowing, and the left side to swell dramatically. He came out of the cath on life support with ECMO in his room standing by. His surgeon looked me in the eye and told me I could lose him. 10 days he was on life support and miraculously, his left side swelling was going down and his heart was beginning to function on his own, as well as take care of all the other organs. We now had to introduce the Coumadin, which took another week and a half to reach a therapeutic INR.
We had a fairly healthy summer, although he wasn't as active, but starting to smile a little more, and not as stoic. We had another cath, another week trying to get his INR stable, then the call came. The results showed that the St. Jude's was too large and they needed to downsize, however, due to scar tissue, they may not be able to surgically upgrade again when the time comes. He would most likely end up needing a transplant. We were devastated, and I was angry. I didn't think it needed to come to that.
We decided to seek a second opinion. I had heard of an amazing pediatric cardiothoracic surgeon, Dr. Ross Ungerleider through someone I knew, and she had been urging us to go see him. He was in Portland, OR and our consultation was on January 12, 2007. When I met him for the first time, I knew he would save my son. It turns out, Isaac's aortic valve was faulty as well. The St. Jude's valve was just fine, and needn't be replaced. On February 8th, 2007, Isaac underwent his 3rd open heart surgery within 2 years, the Ross-Konno, a procedure he pioneered that involved replacing his aortic valve with his own pulmonary valve and putting a cadaver valve in place of the pulmonary valve. They have found that the pulmonary valve will grow in either the aortic or mitral position, if replaced with the persons own tissue valve, and most likely would never need replacing and grow normally. At that time, Dr. Ungerleider had performed over 150 Konno operations, but had only seen five as severe as Isaac's.
Isaac had a rough night, and had to have another drain tube placed as he started bleeding into his left lung, but, he quickly recovered. Four days in ICU, four days on the floor and we were heading home. At his two week post-op visit, I saw his cardiologist smile for the first time ever after listening to Isaac's heart; his heart was healthier than it has ever been. We made the right decision.
Isaac is a smiling, laughing, compassionate, spunky, feisty, articulate and smart 4-year old boy. It has been almost two years since his last surgery and we are hoping those valves will carry him for another few years. They will have to be replaced every ten years or so for his life, and he is on Coumadin, which can sometimes require a lot of management, but he is here. We had his heart healthy little sister, Hannah, on September 14, 2007, and he adores her, sometimes, as he should!!!!!
Isaac is now going to see his cardiologist every six months. If this next checkup goes well, only once a year! I start to get nervous a few months before and don't calm down until we have left the hospital and are almost home. He still has a murmur and some VSDs that would probably need a pacemaker if repaired. There are a few other pressure issues, but he seems to be living with them just fine. We allow him to be as rough and crazy as he can, within limits. We encourage music, love and honesty. There isn't a day that I don't thank God for him, my king of laughter.
If I could pass out any advice, it would be to follow your instincts. This is your child, and every case is different.
