Adam's Heart - Part 9

The 15^th floor of Texas Children’s Hospital is the non-ICU cardiac floor. Almost all the patients there have had surgery, done significant recovery in the CVICU, and this will be their final stop before being sent home. The tenor there was so different from the CVICU – spacious, far less nursing care, and really quiet. Everyone has a private room, and parents, rather than nurses, are the primary caretakers of the patients. In the ICU, parents were encouraged to be there as much as they liked or could, but most would leave for portions of the day – meals, taking care of other kids, and of course sleeping. In the ICU, there was constant noise from the staff chatting, alarms going off, equipment moving around, all kinds of noise. There were some private rooms in the ICU, but we were in a large room that accommodated several babies – it was hard to find a comfortable chair and breastfeeding was a big deal. All that changed when we got to our room on 15. We had a fold out bed right next to Adam’s crib. The quiet was amazing – pleasant, but lonely at times. It had been fun to chat with other parents, see how their babies were doing, and make small talk with the nurses. The only interaction with other patients or parents was limited to rare meetings  while coming or going. We also had to adjust to taking care of our own baby. We had gotten used to the nurses doubling as babysitters while Katherine and I ate meals together, spent time with Ben and Katie, and especially when sleeping at night. Overall, it was much closer to regular life with a newborn baby.

One of the main reasons patients spend time on this floor is so that parents can get some training in how to care for them. Post-surgery babies need to be handled a little differently to protect their sternums. We had to get lessons in bathing, dressing, CPR, and car seat use. It turns out the car seat and CPR stuff doesn’t change much – they just really want parents to be educated in those regards. It was really great to be able to hold Adam and nurse him whenever we wanted. At this point, he had only a pulse oximeter attached to him, and even that was removed pretty soon after we moved to the 15^th floor. The nurse would come in to check his vitals every four hours – a long way from the constant monitoring and alarms of the CVICU.

 

We met each day with the cardiologist for the floor – Dr. Reddy. He was an Indian gentleman who sounded exactly like Rahaj from the Simpsons. He was a very encouraging, kind hearted doctor. Usually he and a fellow would make their rounds in the morning, and we’d talk for a little while each day about Adam. His recovery was basically complete and they just wanted to keep an eye on him for a few more days before sending us home. Dr. Reddy said one thing in particular that we really appreciated. We were concerned about going home and not having the supervision of the doctors. What would be some warning signs that there were problems? What symptoms should we look for? At what point does normal baby fussiness evolve into an area of concern? Our concern, especially Katherine’s, was due largely to the subtle but concerning symptom that brought us to the ER in the first place – the rapid, labored breathing. Katherine had been widely praised for her correct mother’s intuition but at this point felt the burden of “what if I miss it the next time?” Dr. Reddy said confidently there really should be no symptoms or problems like that. Speaking to Katherine, he said “You focus on being a mother, we will take care of his heart.” That was immensely reassuring as our departure from Texas Children’s drew nearer.

We spent a total of four days on the 15^th floor. They let us know on Wednesday that Adam would be discharged the next day. We still had to take our car seat class, and there was a myriad of documentation to be done before we could leave. The day seemed to go by slowly. We had a meeting with Amy Hemingway, the surgical nurse practitioner and one of our very favorite people that we had worked with. She was our liaison to the operating room during Adam’s surgery, and was the one who educated us about how to care for him during his recovery, both in the hospital and at home. She walked the line perfectly between being a realist about risks, dangers, and cautions, but also encouraging about excellent surgical results, and living at home with school age kids and a post-op baby. She was one of those medical professionals who, after speaking with her, you didn’t have to do any interpretation of what was said, because she had explained things so clearly and realistically. She told us Adam would be fully recovered six weeks from the date of his surgery. His heart was fine, but it would take that much time for his sternum to heal. In addition, his immune system would be a little weak – a byproduct of the heart-lung bypass machine. We would need to limit his exposure to crowded places and other kids. Realistically that meant not taking him to the grocery store or church and not having Ben and Katie’s friends and neighbors over to play – definitely a tough pill for the older kids to swallow.

And so on Thursday, August 1^st, at about 5pm, we left Texas Children’s to bring Adam home for the second time. He hated the car ride, crying for most of the long drive home. It was really pretty amazing to be home – no nurses or doctors, no monitoring equipment, no way to check his blood pressure. When we first left the CVICU, we thought about this time arriving home and it made us uneasy. But it turns out the process worked, and we felt vigilant but mostly relaxed. One of the biggest challenges during this whole experience was being away from Katie and Benjamin. We missed them a lot, and it was tough for them to have Mom and Dad gone most of the time, spending their nights at the hospital. Katie was vocal about missing us. Ben was less vocal, but had some behavior issues at school a little while later that we think are a result of this. It felt so good to be at home with those two sweet kids again. It was just fantastic to be together as a family, to do normal family type things like tucking kids in bed at night, reading together, and eating meals together. We really appreciated the simplest things.