“Has he ever been diagnosed with diabetes? Does he suffer from asthma? Does he have a history of interstitial cystitis? Has he ever had MRSA? Have you scheduled his H & P?” she asked.
I didn’t understand some of the questions and told her so. Do most people know what “H & P” means? She said that was the trouble with doing this questionnaire over the phone. It was sometimes difficult to communicate with people.
“What condition does he have?” she finally asked. “Does it have a name?”
“Autism,” I said, in an irritated tone. “He has autism.” Really, I thought, shouldn’t this be noted in his chart somewhere? He was diagnosed ten years ago.
“Does he use a wheelchair?” she asked.
I wanted to punch her lights out.
She assured me every one of the patients at the hospital was special, and they would do everything in their power to help Isaac have a positive experience. It didn’t really matter to me that she sounded sincere. She was on my last nerve. In some ways I was glad Isaac was screaming in the background and I hoped his message would sink in. Here’s a hint: this upcoming surgery might be difficult. I also mentioned waiting was difficult for him, and we’d be there at the very latest -- but acceptable -- time possible.
“Please assign a nurse to Isaac who has a calm demeanor -- someone who has a soft voice, someone who is laid back,” I said. “It’s really important. He has limited language and occasionally some unpleasant behaviors. We prepare for the worst and hope for the best, and I expect you to do the same.”
She said she would make a note of it, and she thanked me for my time.
We arrived at the hospital bright and early Monday, rode the elevator to the second floor, and checked in. Sharon, a nurse who has been in the field for 46 years, announced Isaac’s name. I waved my hands and smiled. She asked where she could find him.
“He just went into the elevator,” I said. “Don’t worry, he’ll be back. Elevators are one of his favorite things.”
We spent about two hours with Sharon. She asked for health history (including some of the same questions I had answered on the phone a few days prior), helped prep Isaac for his IV, and she discussed paperwork, etc. She was pleasant, helpful, understanding, and non-judgmental. This woman was living proof that angels exist on earth.
“Do you think he’ll let me put in an IV?” she asked.
It was the million dollar question. Would he let anyone poke him with a needle? Would he stay in the room long enough? Would he be upset when we shut the curtain and he could no longer see the action in the hallway? Would he pull the IV out?
Will he let you put in an IV? You’d have better luck playing pick-up sticks with your butt cheeks, I wanted to say.
Isaac roamed the halls wearing his gown, his butt cheeks hidden by his undies and a robe. Occasionally he screamed in protest, but nobody seemed to care. Sharon told us she would call the operating room and would attempt to put in the IV 15 minutes prior to the surgery, which we thought was a great idea – and she asked another nurse to help.
Beth was upbeat, fun, and hungry to find good veins. “Oh, look at that good one over there!” she cried, as she poked his arm. He sat still on the side of the bed and untied the tourniquet with one hand. Beth talked directly to Isaac (not me – hurrah!) and told him what was happening. I rubbed his back and within a few seconds, his IV was in place.
Isaac sobbed for a bit, but he was okay. After he was hooked up to the IV, he wasn’t going anywhere. He reclined on his portable bed, covered with blankets. Based on the look in his eyes and his intermittent tears, he seemed to know what was ahead.
“We’ll see you in a few minutes, buddy,” I said, as I kissed his forehead and pulled him close. I assured him he could get his IV removed later. Isaac clutched his digital alarm clock, which he brought from home as a comfort item. My husband kissed him, too. Suddenly Isaac was gone. He was wheeled down the white long hallway that didn’t seem to have an end. It was like saying goodbye at the airport. I had a lump in my throat.
A cup of coffee and an hour later we were sitting in a room with the surgeon who removed the mole from the sole of Isaac’s foot. He was a kind man with crystal blue eyes.
“You’ll need to keep his foot bandaged for 48-72 hours,” he explained. “I’ll see him in a week to get his stitches out, but he can walk on his foot for now without much of a problem.”
It will be tough for him to keep a bandage on that long, I had said. I told the doctor that Isaac would likely pick at the stitches. He’s the kid who wiggles his slightly loose tooth and a day later yanks it out of his head – then tosses it in the garbage. To hell with the Tooth Fairy!
“When can he go swimming?” my husband asked.
“That’s a really good question,” the doctor said, as he leaned back in his chair and took a deep breath.
“He’s been to the water park 28 of the last 29 days,” my husband explained, as he sat at the edge of his seat.
“He’s a little obsessed with swimming,” I said, laughing. The doctor laughed, too.
The wind went out of my sails when he said it would be a week before Isaac could get his foot saturated in a pool. A week? For a kid who is obsessively compulsively interested in the pool? A week is about six days too many.
“If he can’t go swimming, we’re really hoping for some major thunderstorms,” I said. “It’s much easier if the pool is closed.”
The doctor laughed and laughed and said he understood our desire for bad weather.
We headed back to the waiting area. Sharon walked past on her lunch break and said, “How is he doing? What a sweet kid. You are all wonderful. I was really impressed.”
As she walked down the hall I shouted, “Please tell me you’ll never retire!”
Isaac opened one eye and turned on the TV. A basketball game appeared on the screen a moment before a nurse entered. He still seemed to be in dreamland.
“Hi Isaac, do you like basketball?” she asked.
“Yes,” he said in an unusually loud voice, as he sat straight up and jumped out of bed. Without warning, he was off. He sat in the wheelchair for about four seconds and then stood up and ran on his bandaged foot.
“Oh, he might fall!” one of the nurses cried. At least three of them chased after him, running through the long white hallways, past the waiting room and into the second floor admission area.
“He’s going to the elevators!” my husband shouted. We were both trailing behind, laughing. We had brought all of our belongings with us when he so quickly evacuated the room. We were not worried, but the nurses certainly were.
Isaac was absolutely fine. He limped a bit on his right foot and stopped once he got to the elevators, just as we had expected. We thanked everyone for their help and told them we could take it from here. Isaac jumped into the nearest elevator and went down a floor. A nurse followed with a wheelchair.
“Huh, will you look at that . . . “ she said, as she watched in awe. Isaac smiled and opened countless elevators for people.
“The elevators are so fun for him. There are the lights, the buttons, the sounds of the elevator going up and down, and the opening and closing of the doors,” I explained to the nurse.
We sat down near the entrance. He sometimes leaned against me on a chair. We were located near a restroom and the entrance to a parking garage. If there had been a swimming pool near, this scene could have been Isaac’s paradise.
“Well, what a gentleman. Thank you. Thank you very much,” a FedEx employee said to Isaac when he entered the building and hopped into an elevator. He flashed me a smile. Nobody would ever have guessed Isaac had just been knocked out by anesthesia a few short hours ago. On the other hand, I felt exhausted and ready to go home.
When we finally left the building and climbed into the van, I was reminded of the nurse who said, “Oh, he will be sleepy all day. That’s just part of having anesthesia.”
“She doesn’t know Isaac,” my husband said. That was the truth. It’s nearly impossible to keep a kid like Isaac down.
The nurse on the phone had assured me every patient at the hospital was special, and they would do everything in their power to help Isaac have a positive experience. They did not disappoint. The nursing staff had not met Isaac prior to the day of surgery, but it didn’t seem to matter. They respected him, listened to him, and considered our needs. They presumed he was competent. They asked appropriate questions and wanted to learn more. They talked directly to him and let him answer questions.
He spent much of the evening at the indoor pool where he sat with his bandaged foot and watched his brothers swim. He spent an hour at the water park where we have a summer pass because that’s what his schedule dictates. Routine, routine. As long as he couldn’t get into the water, he wanted to watch other people swim. Even with a wrapped-up foot, four stitches, and a filling, he was happier than most people ever dream of being. Simple things like pushing elevator buttons and watching kids jump into the pool on a summer evening bring him joy. We should all take note.