This is part 3 of a 9-part series describing my perspective as my son was diagnosed with and treated for an Atrial Septal Defect. Other installments: Preface, Discovery, Fear, Choices, Anticipation, The Knife's Edge, Just Breathe, Recovery, Home, Epilogue
Then May came. We'd had four months to absorb this new reality, to collect whatever research we could to understand the condition and our options. To come to grips with the fact that we had no choice but to get through this, one way or another. We went to his checkup with the cardiologist holding our breath while he fell asleep on the ultrasound table. This time around, the technician explained what she was looking for...how big is the hole now, has it changed, and what's the blood flow through his heart like? What had been a centimeter and a half in January was now approaching 2 centimeters in May. So we were probably looking at surgery, but maybe the catheterization option would work for him.
When we saw the doctor, he told us we should be thinking about when, not if, we were going to have the surgery done. He didn't rule out the catheterization, but he didn't think it'd work in this case -- but he would defer to the surgical team to make that call. We didn't have to have it fixed right away, he said we could wait a year or even a few if we wanted to. But in his current condition he would be more susceptible to upper respiratory infections during cold and flu season, and there was no way to tell when or if he would start having more symptoms from the enlarged heart or increased blood pressure in his lungs. He gave us the contact info for the surgical team he worked with at the local Children's Hospital. We left that day determined to see this through, whatever might come next.
One day shortly thereafter, our 4-year-old daughter was playing out on our deck. My wife and I were in the kitchen, and I asked her, "Could you tell her at her age that she had to have heart surgery?" That cinched it for us. We weren't going to wait to get this fixed. We were just going to charge ahead with it, whatever it took.
Scheduling the surgical consultation took a couple weeks. His appointment was in mid-June. By the time we got there, we knew this was getting serious. But we didn't expect things to move quite so quickly. My wife had to use the restroom while we were waiting for his appointment. While she was in there, the nurse came out and started telling me that his case had been presented to the surgical conference, and the consensus was that he was not a candidate for the catheterization & device closure option. My wife rejoined us right around the point when the nurse asked if we wanted to go ahead and schedule his surgery -- we hadn't even seen a doctor yet. This was all pretty overwhelming. We had already decided that if he needed surgery, we'd take the first available time. There was no sense in waiting any longer, so when she said she had an opening in 12 days, I told her we'd take it. At the time, I couldn't bring myself to actually think about what I was committing to -- just that we had another appointment to bring him in 12 days later.
We saw the physician's assistant next. She was both compassionate and knowledgeable, so by the time the surgeon came in I felt like we projected this image of aloofness because we didn't ask many questions of him. It was just that by that point we had read so much about the process and the outcomes, and confirmed all of it with his assistant that we didn't really have any questions left to ask. Plus, we realized that we were at a point where we were just going to have to trust the judgment of the professionals involved to do what they did best. They recommended that we go ahead and have his pre-op bloodwork and a chest x-ray done so we wouldn't have to come back for another visit before his surgery.
Off we went to the radiology waiting room to get the x-ray. This was our first encounter with what we later would refer to as the Children's Hospital Vibe. Here you are, in a room full of sick kids and scared parents. And you realize that almost regardless of what's wrong with your kid, there's somebody else in the room who's probably dealing with something worse. Maybe it's the mom and dad in the hallway being told that their daughter's tumor hasn't improved with the radiation. Maybe it's the mom wiping off her quadriplegic son's tracheotomy tube. You can get post-traumatic stress disorder just from spending a few minutes there waiting for your name to be called.
The x-ray room itself was decorated in a cartoon jungle theme. The stuffed animals on top of the metal cabinets softened the room a little, but there was no hiding the fact that this was a place where serious things were done. The lead apron I had to put on while I held my son's shoulders still against the table so they could get their picture was the least of the weights I bore that day.
After the x-ray, we went to the phlebotomy lab for the blood work. This was a series of progressively smaller waiting rooms, the last of which held a collection of moms and sometimes dads (rarely both) with their kids, all mostly older than our own. All the kids were fine while they were waiting. Then their name was called, they disappeared around the corner, you heard a yelp or two, and out they came in tears. Some in their parent's arms, others trying (usually unsuccessfully) to be tough and grown-up about it. An eternity later and it was our turn. My wife waited in the chairs while I took our son in. He sat on my lap and was fascinated with the giant clown fish stuffie hanging from the ceiling. The nurse that drew his blood started on his right arm. When the needle went in, he flinched, then looked up at me as if to ask "Dad, is this alright?". I told him it was okay and she was almost done. He didn't cry. He didn't cry when she had to stick him in his left arm because the right arm came up dry. He didn't cry when she went back to the right to try for another vial when the left went dry. He didn't cry when she went to the left (again) for the final draw. I couldn't believe it. Four sticks, two in each arm, and this seventeen-month-old was not screaming. He didn't like it one bit, but he didn't cry. Wow. This is one tough kid.
When I took him back out to collect his mom, there was a little boy who was pretty rattled about what was happening to all these kids when they went into the back room. He was concerned that it was going to hurt really bad. I got down on his level and showed him my son's new boo-boos and told him that if this little baby (from his perspective, at least) could have that done and not cry, I bet he was going to be just fine. That seemed to help him out quite a bit. Of course, we left before he came back out so I don't know how it turned out for him -- I just know that it seemed to calm him a little right then, and that seemed to relieve his mom a bit since she didn't really know what to tell him to assuage his fears (when it was obvious she had quite a few of her own, as did probably every other parent in that room).
Once we got home, we put our son down for his nap. He was exhausted after a morning of examinations, x-rays, and needles. He had been down for an hour or two when we got a call from the surgical physician's assistant. She said that his bloodwork came back with an extremely low platelet count. She was concerned that he might be at risk of bleeding, possibly needing a transfusion to get things back to normal. I mentioned to her that he had had four sticks earlier in the day, and had no problems with clotting. Still, she recommended that we go to a nearby hospital to have more blood drawn so they could confirm the results. We let him finish his nap, then took him over to the hospital. It was pouring down rain, so we just ran for the nearest door when we parked. But the hospital was undergoing renovations, so the only way to get from the lobby we entered to the lab was to go back outside and re-enter through the main doors. We were soaked by the time we got there.
For the second time that day, I held my son while a nurse tried and failed to get what she needed from the first needle stick, then had to switch to his other arm. This time, he had just had enough. He started to cry, and it was all I could do to not just bawl along with him. At the same time, I realized that having him turned into a pincushion was nothing compared to what we were going to put him through in a couple weeks' time.
By the time we left the hospital that day, the rain had subsided. The next couple weeks went by pretty quick. We tried (mostly unsuccessfully) to ignore the sword of Damocles hovering over our family. We took the kids out on our sit-on-top kayaks at a local lake on Fathers' Day. Our son was riding with me, and started to panic in the middle of the lake, so I pulled alongside my wife's boat so she could console him (he wanted nothing to do with me at that point). He started to calm down, but it was obvious he wasn't going to leave mommy, either. She wasn't going to be able to paddle back in, so we hooked up her bow line to my stern, and I towed all three of them (wife, daughter, and son) back to shore. That was quite a workout, but it was nothing compared to what was coming.