A beautiful, frivolous thing

So despite Max's illness, my husband and I went away for a night and left him in the competent hands of his Grammy. My husband and I had registered to be in relay triathlon teams at Point Sebago Resort, the type of beautiful, frivolous thing that has always seemed irrelevant when faced with Max's health issues. But we were on teams, we had to go!

...briefly trading his glasses for daddy's goggles...

And it was wonderful. We were only gone for a little over 20 hours, but I returned bathed in sunshine, cleansed with sweat and refreshed in spirit. While we were gone, Max continued to mend. His breathing is completely back to normal now. He was so happy to see me, he didn't bother to fight putting on his 'eye bam-bam' this afternoon. I've discovered that twirling him around in circles for the first five minutes of the patch helps. I may need to start taking leftover Zofran so I don't throw up, but he is happy. He loved hearing about our race and wanted to know all about me "running really fast" and daddy "swimming in da lake wif his glasses."

Today made me remember the importance of taking care of yourself when you are taking care of someone else who needs you. Especially when you are too scared to leave them.

Tickling your tummy

My little Max woke up from his nap yesterday and desperately wanted to go use his new blue bat and blue soft ball. His oldest sister had a softball game at a park with a fun playground. Even after his rest, he was still breathing heavy and fast. Once I let myself count his respiratory rate, I found myself doing it almost constantly. 32, 36, 40.... All well above normal and he didn't have a fever to blame it on anymore. 

Max had barely eaten anything all day and I was making no progress with the usual foods he liked at home. The sun had come out and the girls wanted to go play before the game. I decided we would stop at Mc Donald's to get Max a milkshake on the way. I would try to keep him in the car, watching movies and drinking his milkshake instead of running around. I could watch the girls from the car. I didn't want to keep them hostage just because their brother was sick.

Max drank most of his chocolate milkshake by the time we arrived at the softball field and as soon as I opened the car doors, he charged outside after his sisters with ball and bat in hand. He happily whacked the ball around with his bat, hockey-style, on the basketball court adjacent to the softball field.

After a while, I was able to entice him back to the car for a little Nemo break. As he clambered into his seat and I started the movie, I heard him breathe heavily as each second passed on the DVD display. That's a respiratory rate of 60! Should I take him to the ER? I should call his pediatrician first....


But he had just been running around so I tried to listen to my own advice: Do something else. Focusing on my daughter's softball game, I blocked out Max's breathing and tried to direct my brain towards what was happening outside the car. After the inning was over, I let myself count his breathing again: 40. And then he asked me for a snack and I noticed he had consumed his entire milkshake. He didn't have a fever and seemed to be feeling a little better.


Antibiotics and steroids don't treat heart failure. Perhaps this was pneumonia and not just wheezing with an ear infection, but regardless it seemed less like heart failure as the day worn on. I still had him sleep with me last night, dozing only for a few minutes here and there for the second night in a row. Today, when I felt his breathing, it was closer to my respiratory rate than my heart rate even after running around. This afternoon when I took off his rocket ship socks, I ran my fingers over his shins to check for swelling. None. 

He was laying down so I palpated his belly just to make sure his liver wasn't enlarged.

"What you doing mommy?" he asked as I felt his belly.

"Tickling your tummy, sweetie," I replied.

"No, mommy. You check me," he said as he peered at me over his glasses and helped me by lifting his shirt.

"I check your tummy!" I said, engaging in the same silly bedside manner I use with my patients. I smiled, infused with joy upon discovering the absence of a protruding liver edge.

"I fine, mommy," he said, brusquely, as he put down his shirt.

Yes, Max, you are fine, I thought as he charged away from me, squealing with delight and playing with his sisters. 

Go do something else.

So Max is sick. He has had a little cold for the last week. I came home from work and he just wanted to cuddle instead of play in the long lost sunshine with his sisters. I knew something was wrong, so I shouldn't have been so terrified when I realized he had a fever within the hour. He refused to take ibuprofen and just wanted to cuddle and watch cartoons. All four of us piled into my bed and watched tv, the girls happy for my laxity about the usual screen time rules.

But as I watched Max, I realized he was breathing really fast. Really fast. Maybe once a second although I didn't dare let myself count.

It's just the fever, I told myself. Once the fever comes down, his breathing will be normal. But I gave him his Xopenex anyway. They say the apple doesn't fall far from the tree and I wheeze when I get colds, so it stands to reason he would too. Only he has to have Xopenex since the plain Albuterol binds to lung receptors but also to heart receptors and could stress his heart.

As he breathed in his medicine, my brain offered a completely unsolicited thought: Breathing fast can be a sign of heart failure.

He slept on me for hours, my heart in my throat, as I watched each breath with my hand on his heart, feeling his own special heart beat. He doesn't have a "lub-dub." And then another thought: Could this fast breathing in fact be his heart failing and the cold is just the trigger? 

I can listen to anyone else's lungs but I can't listen to Max's because all I can hear is his heart murmur and I want to cry. So I tried to reassure myself and held him tight. After a few hours, he woke up and said: "Momma, I feel yucky."

I gently encouraged him to take the ibuprofen and thankfully he did. I watched his breathing and held him with his head on my left shoulder, until his fever broke. I thought maybe his breathing was slowing down a little. His brow was damp with sweat. I finally got up enough courage to count his breathing: 34. That's fast but not as fast as it had been.

I will take him to the pediatrician in the morning. It's more likely he has pneumonia than heart failure, right? I kept giving him his breathing medicine all night and dozed for only a few minutes at a time, noting every hour as it passed on the clock. When I did sleep, my cheek resting lightly on his head, sure  this would wake me if the fever returned.

On the way to the pediatrician's office we saw a procession of police cars and an ambulance guiding the runners carrying the Maine Special Olympics Torch. Max was in heaven and wanted to tell everyone at the doctor's office about the police cars and the "amb-ance" he had just seen. He was such a good little patient, climbing up on the table and cooperating completely with the doctor and nurse.

We left with prescriptions for antibiotics, more Xopenex and steroids and went to Target to fill the scripts. Max was so happy, delighted to get a prize as we do when the kids have to take antibiotics, and he chose a blue tee-ball bat and a blue glove and ball.

We got home and he ran around, happy to show his sisters his new toys and then I suggested a rest. He wanted to sleep with me so we lay down on my bed, assuming the same sleeping position as last night. He was breathing fast. Quite fast. It's just because he has been running around, his breathing will slow as he sleeps.


So I held him and watched. But al I noticed was his neck vein visibly vibrating and him sucking in at the top of his breast bone. What if the Xopenex has strained his heart? What if he has to be hospitalized for pneumonia and they realize it is heart failure?


Unable to reassure myself, I slid out from under him and rested him on my pillow. Stop watching him breathe, Gretchen. Suddenly what I was doing felt like the long wait we had as we prepared for his heart surgery, with me agonizing over every tiny change in his status. He is on the right medicine. He is sleeping peacefully. Go do something else.

So he is still asleep. The piano teacher is here and my girls are having their piano lessons as I try not to be terrified and wait for the magic of modern medicine to kick in.