Friday, May 14, 2010

Where we are right now

"Mommy! I want the Iron Man popsicle." Then he whispers, "Iron Man."

We're relaxed and smiling after a frustrating, tearful, stressful, fight over whether he, a four-year-old, can swallow an adult-sized pill. At one point I was so angry at his refusal that I almost (almost) threw a plate onto the kitchen floor. In my mind it shattered, but my body carefully placed it on the kitchen counter.

His dad and I tried holding him down and putting medicine-laced yogurt into his mouth and holding his mouth closed. His nose and mouth were covered momentarily and I thought, we are suffocating him. We tried joking, we tried threatening. We had started with bribes and promises of how proud we'd be. We ended up so angry we were shattering.

Finally I became the boss. "Time out until you are ready to take the pill." Confident, no longer angry, I told him he could do it. He did it, and we all dissolved in a pile of hugs and praise and relief. I love you so much, we said. I'm so proud of you. I knew you could do it!

Taking a pill this size is a tall order for someone his age, but I've seen him do it three times, twice during our overnight stay in the hospital this week. I've also seen him take what he calls his "small white pills that are just white and small" -- beta blockers intended to prevent the aneurysm in his ascending aorta from growing larger until it bursts.

He needed to take this pill to get rid of strep throat, and he needs to overcome strep so we can restart him on a new beta-blocker, because his small white pills caused his blood pressure to drop so low he couldn't stand up.

So today it is the big pill, tomorrow we'll add a new beta blocker and watch for signs of dehydration and over-medication--the combination that landed us in the hospital for an overnight this week. After a week, the big pills will go away, and we'll slowly increase the beta blocker and hope the next time he gets sick his body can handle it and he won't need iv fluids. When he went faint in my arms, floppy and unable to answer questions, I thought it was his heart--I thought, it's happened. His heart has exploded. I called 911. But it wasn't that. It was just his medicine was too strong and he had a case of strep throat.

My son's aorta is enlarged because the heart valve that controls the blood flowing through his aorta isn't shaped right. When we learned this a couple of months ago, the echocardiographer showed me what his brother's (normal) aortic valve looks like: with each heartbeat three flaps open wide, hugging the aortic wall; then snap precisely shut, intersecting in three ridges that look like the emblem for Mercedes Benz. But our four-year-old has two flaps inside his aortic valve. The third is fused in place, leaving two valves flapping open and shut imperfectly, like slightly leaky fish lips.

This morning I took him to his pediatric cardiologist, a specialty you know exists but can't quite picture until you shake her hand. My son and I sat in the waiting room with serious-looking parents and children at play, and my son played peek-a-boo with a little baby in a stroller. She smiled and gnawed her cheerios, and her mom flashed a worried and distracted smile, then asked her father, "Why are they taking so long? I hope nothing's wrong."

I looked at her worry and saw my own. I thought, here I am, a mother among mothers in a pediatric cardiology waiting room. I said something to my son about going to get a treat at the coffee shop afterwards, and the other mother looked up and said, "There's a healing garden on the eighth floor. You should take him there and he can pick out a stone to bring home with him." I said, "Oh, a healing garden? What a nice thing to have here." With weary warmth, she agreed, "It's a good place." Our eyes connected in a way that scared me. I looked away.

We rode the elevator upstairs. The doors opened and I read, pediatric oncology. I noticed flyers advertising support groups for parents of children with cancer. Things could always be worse, I thought. Beautiful flags decorated by children decorated the hallway. "Think positively!" one said. "Hope, Peace and Love" offered one. Another challenged me, "Live Strong-- I Do!"

The healing garden is a peacefully landscaped balcony with glass walls overlooking the city skyline, Charles River, and Longfellow Bridge. You can see the Red Line subway trains move in and out of the Charles Street station, and you can see the Citgo sign that overlooks Fenway Park. My son threw pennies into the water of a polished-stone fountain and I made a wish on each one. My first wish was too small--I want him to make it to being a teenager without needing surgery. He wanted another penny, another wish, so I wished, "I want him to grow up and become a man and have a family." A third penny, "I want him to be happy."

My son drew a scribble and I wrote in the guest book--our names and "pediatric cardiology patient and his mom feel thankful for this place." My son selected a stone--smooth and brown with layers worn away to reveal black rings like a topographic map. He handed it to me. It was bigger and heavier than I thought it would be.