As I was getting Kathleen ready to go to her 1 year checkup this morning, I realized that two years ago we were getting Henry ready to go to the pediatrician too. Hers was a scheduled visit, planned months ago. His was a nervewracking, maybe we should have gone to the ER the night before but I was too scared to take him in kind of affair.
Last year, I revisited, relived, processed, and otherwise dealt with all of the things I went through with Henry during his brief, intense life. All except the very end.
I don't like to remember the last night we had Henry home. He got sick so very quickly. Earlier in the day, the visiting nurse had been by. Henry was looking good. Heart sounded good, lungs sounded good, no fever . . . by 10 PM he had a fever. I gave him Tylenol. Then he started throwing up. I stopped his feeding pump. Then he got diarrhea. We changed the crib. We changed his pjs. Again and again and again. And then we gave up and just tried to keep up with a clean diaper.
This perhaps would have been a good time to go to the ER. I couldn't do it. I was paralyzed by what he germs might pick up there. I was paralyzed by the idea of going back to a hospital less than 48 hours after being discharged from a 3 month and 3 day stay. I was exhausted and overwhelmed and I couldn't do it.
I called the pediatrician. I called the nurses at Children's. I had the pediatricians and one of the Fellows at Children's talk. We agreed I'd give him ibuprofen for his fever and bring him to the pediatrician first thing in the morning.
He had a fever.
This is what bothers me. I knew, had seen too many times, how a fever affected him. How his heart rate went up and everything fell apart from there. It was one of the things I expected to have to argue with doctors and nurses about. I expect them to tell me his fever wasn't that high, it wasn't that big a deal. It is for my son, I'd have to explain. But I didn't. He had a fever and all I could think was We just got home; I can't go back to the hospital.
The next morning it was snowing, but we got out and down the road to the pediatrician. This time when they wanted us to go to the hospital, I agreed, resigned, to go for tests: EKG, echo . . . As we drove, the snow got heavier and Henry's breathing deteriorated. I was sitting in the back with him and I just watched as each breath became more labored. I could do nothing. The highway was down to 40 mph; we were going 70 passing state troopers.
In the ER, they struggled for a long time to get a line in him. They were going to move him up to the PICU, but suddenly didn't like the looks of him, didn't want to move him anywhere. They pulled out what looked like a drill and got immediate access in his leg. That's new. Haven't seen that before, I thought.
The bearded doctor came out to tell me they had him on a ventilator. I started to cry.
It's just what he needs right now, he told me.
It's two weeks minimum to get him off it, I thought. I still believed he would make it. I still dreaded another hospitalization. It seems funny now—and not.
Sometime that night—time was a blur—Brian's mom suggested we go and get some rest. We had not slept in over 24 hours, and the night before that had been punctuated with a relentless med schedule, and the night before that spent sleeping upright in a straightbacked chair or on the hospital floor. She stayed with him. We went home and packed some things for our return. We had been in bed for less than a hour when the phone rang. How long does your heart stop when your baby is in the hospital and the phone rings late at night?
Back at the hospital in the parent waiting area, we tried to sleep. Brian woke me up in the wee hours of the morning. He had what Henry had. He was spent, weak, wrung out. I called his parents to pick him up. And I waited.
I didn't know it would be the last day.
I don't think about that last night at home with Henry or even that last night of back and forth between home and the hospital.
Mostly I remember that he came home. He did not die in Boston. He made it home. We carried him through the kitchen door where we brought him home as a newborn. We put him back in his swing and watched him noticing the mirror above it. We all slept in this house that we call home for one night.
It always feels like one of Henry's little gifts to me that he made it home. Not for long, no, not nearly long enough, but he got here. And that means so much to me.