Griffith Family Blog: Adam's Heart

The 17^th floor had the waiting area, conference rooms, a special room for pumping breast milk, and the Ronald McDonald House Family Room – an inviting space with dining tables, a kitchen, public refrigerator, and cabinets stocked with snacks. Down on the 4th floor, next to the NICU, was the Ronald McDonald House residence for parents with children in the ICU. They had 20 guest rooms there, and we had to request each morning to have a room for that night. Those 20 rooms were shared between the CVICU, NICU, and PICU, so getting a room was never guaranteed. Priority was given to those parents whose kids had the biggest medical need, such as immediately following surgery, and the rest of the rooms were assigned via lottery. There is another, off-site, Ronald McDonald House that provides residence for families who have travelled from out of town for their kids to receive treatment. Each day around 6pm, we’d find out if we got a room for that night. And fortunately, after our first full day in the hospital, we did get a room at the RMH. Like most, we had heard of the Ronald McDonald House, but we had no idea what an amazing blessing this place is until that first night. The last 24 hours had been so trying for us – we were completely spent emotionally. It was so refreshing to spend the night with each other, to have a little space just for the two of us. As Katherine mentioned in her post, this was an amazing time of bonding for us, leaning heavily on each other as we took turns on the emotional roller coaster. One friend urged us early on to “take care of each other” during this process. This was great advice, and those nights in the Ronald McDonald House were the cornerstone of being able to do that. Among the blessings encountered during our time at Texas Children's was that we got a room every night until we left the CVICU.

The weekend was a period of waiting. Adam was stable, just waiting for his turn in the operating room. While we knew he needed the surgery, and waiting around was unproductive, we were anxious about the reality that he would be undergoing open heart surgery and that there are always risks. There was a part of me that wished the day would never actually come. We spent lots of time with Adam, holding him and trying to talk to him and talk near him, so he’d still hopefully have the comfort of familiar voices. We had some trouble deciding how to talk to Benjamin and Katie about what was going on with Adam, and why we were not home with them. We spoke with a staff member at the hospital called a Child Life Specialist, who guided us on best to handle this with the other two kids. We told them about Adam’s heart, and that he would be having surgery and would be in the hospital for a little while. On Sunday afternoon, we had them come for a visit. The Child Life Specialist met with us and them together and was really good about talking to them and preparing them for what they’d see in the CVICU. She showed them pictures of some of the equipment that would be there, and we talked some more about the heart, what it does, and how Adam’s needed surgery to work right. They proudly wore their “Child Life Approved” stickers and we went upstairs to visit little brother. They did fantastically! Ben had a good time pointing out the devices he had seen in the photos, and they both just seemed to think it was fun to check out someplace new. They talked briefly to Adam, but didn’t seem alarmed by the wires coming out of his swaddling blanket. It was really fun to have them there and to be together.

Sunday night, Katherine got a phone call. It was one of the cardiologists, and he said there had been a cancellation in the schedule and they wanted to perform Adam’s surgery first thing in the morning TOMORROW! We knew cognitively that this was a good thing, but this hit us emotionally like a ton of bricks. One of our first thoughts was, “Why was there a cancellation? Nobody cancels heart surgery. Did somebody die?” (It turns out the scheduled patient had a fever.) We spent some time talking with the attending cardiologist that night by Adam’s bed, and he assured us Adam was chosen to fill the slot not because his condition was deteriorating, but simply because he was the most “ready.” All the research and imaging had been done, and the surgeons had done their homework on his condition. His VSD was rather large and uncommonly positioned, so everyone felt it was in his best interest to perform the single, more complex surgery to correct both problems. He told us that Dr. Charles Fraser would be performing the surgery. He is the head of cardiac surgery at Texas Children’s, and the attending described him as a “famous” man in the nationwide cardiac community. Good news indeed. Barring something unexpected from him, the morning surgical conference would be just to ensure everyone was on the same page regarding Adam. Still, we shed a lot of tears that night.

We were asked to be there early the next morning to sign consent forms and be present for the morning rounds of the surgical team. I had assumed there would be a mountain of consent forms before a procedure like this, but that turned out to be false. There was one for anesthesia and one for surgery that basically gave the surgeon the right to use his best judgment if they encountered something other than what was planned. The Monday morning surgical rounds are a big deal. We knew exactly what was happening when about 25 white coated men and women walked slowly into our part of the ICU. A cardiac fellow would address the group with all sorts of medical information, then a few of them would look over the baby and listen through their stethoscope. Without seeing his badge, we had a pretty good idea which one was Dr. Fraser. He was tall, and carried himself with the air of an elder statesman. Quiet, yet commanding. After the team finished their review of Adam, he sat down with us for a few minutes and went over the plan for his operation. He acknowledged that anytime you’re talking to a cardiac surgeon about a ten day old baby, it was a big deal, but he shared his confidence about the surgery. We felt confident too. Here’s a link to his biography: Dr. Charles Fraser.

The next visit was from the surgical nurse practitioner. She would be our liaison to the surgical team during the operation. She stayed with us for a while to answer all our questions and described how she would give us updates every hour or two during the surgery. It seemed like an eternity, but we then waited for an hour or two for things to get started. We took turns holding Adam, knowing that it would be at least a few days before he could lay in our arms again. After the surgeons finished their conference, the anesthesiologist came by to talk with us. He was very businesslike, but put us at ease ensuring he had done thousands of operations with Dr. Fraser and would be keeping a very close eye on Adam during the operation. Then it was time. We placed Adam in his bassinet, paused for a photo, then the anesthesia team disconnected Adam from his fixed monitoring devices and wheeled him away.

Simple accomodations with Ronald McDonald, but more welcome than the finest hotel.