My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Friday, April 30, 2010

Critical Care Unit

Twenty Years Joyce

I had been to an emergency room once before with TJ. He walked into an open cupboard door and sliced his eyebrow open. One look and I knew he would need a stitch or two. I was of course worried about him, but everybody moved about at a normal speed. Today, they were flying in and out of Sarah's area. It seemed everyone was dialed up to super speed. In a strange way, I was enjoying the show. Each person had their own specific task, yet they were working in such tandem. No one seemed to realize I was standing in the room.

Finally after about twenty minutes, a woman in a white coat who I assumed was a doctor, sat down next to me and began to ask me a few routine questions. Then she asked me about Sarah's heart surgery. I shared what I could recall. I made a mental note to myself that I really needed to write some of it down, as there was such a prolonged recovery it was hard to remember it all at a moment's notice. Then she said to me, "She is fragile. We are surprised you did not damage her scar or chest cavity while you were doing CPR. We do not see any signs of internal bleeding."

I was confused. I replied, "I did not do CPR." "Oh, I thought the paramedic said you had before they arrived at your home, she replied." "No, I performed artificial respiration." "That's the same thing," she said. "Not really", I replied, "with CPR you do chest compressions, I've taken classes in CPR. Sarah's heart was still beating, she needed artificial respiration to give her oxygen for her brain." The doctor replied, "I've never heard of that, will you excuse me for a minute."

As she walked out of the curtained area, I started to question my own sanity. A few seconds later, she returned with another doctor. He introduced himself as the chief resident. Of course, I said to myself, we are at a teaching hospital. He asked me to explain what I had done. So I repeated the story. "That is a very old method," he replied, "but had you done chest compressions I believe it would have been more damaging to your daughter." And that's when my legs went a little wobbly. Why did I recall that class all the way back in 1971? I had taken CPR classes much more recently, but I did not even think about those when I found Sarah in her crib.

A few months later, my mom brought me my Girl Scout Handbook. I went straight to the pages that describe artificial respiration.

Back to the story. Just as I was beginning to tell this additional doctor about Sarah's medical history, John walked in. Our neighbor had come over when she saw the ambulance at our house and offered to stay there until John and TJ got home. She then stayed with TJ, so John could come to the hospital. I am sure someone is saying right now, why didn't she just call him? Well...this was twenty years ago, April 1990 b.c.p. (before cell phones:) I know that seems so strange, it even seems strange typing it.

The doctor went on to explain that they needed to get Sarah stabilized. They needed her vitals at a certain point, her oxygen levels, her blood gases etc. before they transport her. Transport her? Where are we taking her? "Oh didn't they explain this when you checked in, your insurance doesn't cover care here. You need to be over at the Cleveland Clinic." And that's the moment that I realized health insurance rules the world. Hmm...seems nothings changed in twenty years.

After about twenty four hours in the PICU, they announced that we were ready for transport. It had been determined during the night that Sarah could not breath on her own, so she was once again intubated and connected to a ventilator. This meant she needed the critical care transport unit. So we sat and waited for a while. Then all of a sudden a nurse throws the curtain back and...

Wow!!! What arrived was a team of two men and a woman dressed in total blue jumpsuits covered with colorful embroidered patches and what looked to me to be combat boots. I was in awe. They began to disconnect tubes and wires from the machines in the hospital to machines on this high tech looking gurney. For a minute or two I lost sight of the fact they were working on my daughter. I was just so fascinated with everything before my eyes. Soon they announced they were ready and asked if I had all of our belongings. I gathered my purse and jacket and we were off.

When we got to the automatic double doors, I was expecting to see an ambulance like the one we arrived in. Instead what was waiting was a much larger, intensely built vehicle that had a rainbow painted on the side and read "Pediatric Critical Care Unit." As I stepped in, I could not believe my eyes. The setup was just like the PICU. A traveling PICU. The kicker, we were only traveling about five blocks. That's how far it is from University Hospitals to the Cleveland Clinic...five blocks...


Adelaide Dupont said...


About the artifical respiration.

And how the insurance companies rule the world still.

(You learnt to be wily over them!)

Rochelle said...

I love read your reflections, amazing to see where you have been.

Lacey said...

OK, since when has rescue breathing become old fashioned? What a dumb doctor. They still teach that today. You give two breathes and check for a pulse, if no pulse, then start CPR!

Nan P. said...

Joyce, I have been reading the "story" over the last few weeks. you guys have had it rought! What strucks me in this post is simply that, as her mother, you simply did what instinct told you to do to save her. Some times, in crisis situations, we have the best reactions, the only reactions that have any worth.