A major surgery… the confirmation of love.

I walked slowly up the four flights of stairs, on my way to the pediatric critical care ward.

Entering the shiny double doors, I paused to scrub up with disinfectant at the sink, and then made my way to the back corner room that had been Jessica’s home for the last 10 days. The curtain door was closed. There must be something going on I thought, as I quickened my pace.

Quietly and slowly opening the door, I looked expectantly towards Jessica’s bed. Dr. Forester, stethoscope to her ears, looked up and smiled absentmindedly as she leaned over Jessica, carefully listening to her heart. Just a routine check-up I thought with relief, as the monitoring equipment attached to Jessica beeped rapidly in the background.

I looked at Jessica lying there, with tubes and wires coming out all over her body, and a respirator covering her face and nose to help her breathe. Our eyes met.

“Hi Jessica!” I said cheerfully. “How’s my girl?” 

As I reached out, and took her small delicate fingers in my hand, a thought came rushing back from the past, “…look, she has the hands of a pianist. She’s going to grow up to be a great concert pianist!”

“That’s remarkable… just remarkable!” Doctor Forester exclaimed, interrupting my thoughts, as the insistent beeping rapidly declined, followed by a plummeting of Jessica’s vital sign numbers. I looked up and watched them tracing themselves in green, on the monitor. “Jessica sure knows her daddy! That really is remarkable!” the doctor finished.

Surprised at her comments, I looked at Dr. Forester. She was looking at me in amazement, a broad smile on her youthful face.

Stalled in the Critical Infant Care Unit. (CICU)

We had met Dr. Forester as a part of the brilliant surgical team, that had operated on Jessica. Her speciality is ‘Pediatric Cardiology.’ That’s a ‘heart doctor for little kids.’ We liked her almost immediately and the tender way that she interacted with Jessica. She was a young, but excellent doctor, now doing follow up in the hospital.

Jessica was recovering from major surgery.

One of the physical ailments that comes with the territory, when you have a developmentally delayed child, is something called ‘scoliosis’ of the spine. It occurs, because the child, as they are growing up, may not be able to stand and walk and maintain even muscular pressure up and down their spine. The muscles attached to the spine, develop with a lack of balance in their strength, or the amount of pull they exert. This uneven pull can twist and curve the spine and results in the medical condition I refer to… ‘scoliosis’.

Scoliosis is almost always inevitable with a child like Jessica, and your goal through interventional therapy is to delay the corrective surgery that will be needed, for as long as possible.

For instance, it is best to get beyond the teenage ‘growth years,’ to avoid needing multiple surgeries.

The surgery I am describing here is a ‘major’ surgery. Add in the fact that you are dealing with a fragile health status in Jessica’s case, and I think you can see it is dangerous.

So why did we decide to go ahead with this major surgery? Why were we putting little Jessica’s life at such risk by putting her through all of this, you may ask?

Well, the answer to those questions is that the side effects of not treating it can be fatal, putting undue pressure on the heart and other critical organs. So, even though we had hoped to avoid the surgery, it became eventually apparent, that to extend Jessica’s life span we had to go ahead with it. So, we located the best surgical team we could find, set the date, and moved on to another ‘adventure’ with Jessica.

Preparing for the Surgery.

We had tried to prepare Jessica for her hospital trip, and since we couldn’t sit down with her and explain things, we had to look for other ways to ease the shock. There were so many things we wanted to tell her, like what would happen and why all this was necessary, but it just wasn’t possible. I remember, at the time it was such a heartache as the date for her surgery approached.

Three more days.

Two more days.

Today’s the day!

So we did everything we could to help her feel at ease with the hospital surroundings. We took her down there for a few visits, where the Critical Infant Care Unit (CICU) nurses actually let us go and sit in the room where she would be.

We played beautiful, uplifting, instrumental music and hymns for her constantly. Then we got permission to place a stereo by her bedside, so that we could play the same CDs for her after her surgery and during her hospitalization and recovery.

She had a bright and cheery room, and with the music constantly playing, it became a calm little island of serenity in the life and death storms of the critical care unit. Many of the nurses would seek it out on their breaks and as the days rolled by, they came to love the atmosphere in Jessica’s room.

The surgery had been an all day affair, involving two different operations. One from the front and one from the back. The orthopedic surgeon had called us periodically during the surgery, giving us updates: “She is doing very well,” “Everything is going as planned,” was the report. Her surgery finished. She had been taken through recovery and on in to the children’s critical care unit. The entire hospital trip was supposed to be three or four days, and five at the max. We were now on our tenth day, with no end in sight.

The problem? Three unsuccessful attempts to ‘wean’ Jessica off the ‘respirator,’ the machine that was keeping her breathing steadily and feeding her a higher level of oxygen. It was a critical step in her recovery, that had ended in failure each time, with Jessica gasping for breath and her heart and respiration rate, racing wildly. Failure after failure after failure.

Her progress had stalled.

The Doctors Big Idea.

“I have an idea Mr. Walker,” Dr. Forester said, with sudden inspiration. “I think it just might work.” the doctor continued, still smiling. “Yes, I think it could work!”

From the time I had first met Jessica, and she reached out to me that day in the hospital and grabbed my finger so tightly, we had experienced a kind of special bond. It was as if she were saying with her tight little hand…

“Hold me daddy… hold me tight!”

Every day since, I have hugged and kissed her and treated her tenderly. Sometimes just sitting on the floor and softly scratching and rubbing her little head as she relaxes and drifts off to dreamland. Sometimes when Jessica was ill or having trouble sleeping, Renée and I would nestle her down between us in bed, and rub her feet or stroke her forehead to comfort her, treasuring the closeness of the experience.

As she grew up, more and more apparently disabled, we didn’t stop the hugs. We just held her all the tighter, and she would relax and coo and look happy and safe in our arms.

As I have said many times, if love would cure her, she would be the healthiest kid on the planet. Her brother and sister have also showered her with affection over the years.

Jessica is a Very Special Child to Us.

We have always treated her with dignity and respect. She is not unworthy of our attention because she is ‘handicapped.’ We have always assumed that she was able to understand us and accept our affection and care, even though she was unable to verbalize it. We have always spoken to her as a person and did every thing that we could to communicate our love to her.

“Mr. Walker, are you… uh… squeamish at all?” said Dr. Forester eagerly, as I wondered what she was getting at.

“Do you think you would be able to assist us in removing Jessica’s respirator?” as she finished, watching me closely.

Squeamish?

I flashed back over the last eighteen years of Jessica’s life.

The endless tests. The CT Scans. Magnetic Resonance Imaging scans. Not to mention the poking of her tiny arms with needles. The relentless drawing of blood for analysis and the late nights in the emergency room, and more shots and blood and bandages. Jessica lying in the gaping mouth of the CAT Scan machine in her little pink dress, with the red cross hairs focused on her tiny forehead. I ended the emotional kaleidoscope on the heart stopping image of her sitting up on the gurney ten days before, and looking back innocently at her shaking parents, as she passed through the big metal swinging doors on her way into surgery.

And then, I looked at Jessica lying there on the hospital bed in front of me, all hooked up like some kind of an experiment gone wrong, staring intently up at me. I was feeling the steady pressure of her warm little grip on my hand.

‘Squeamish?’ I had to smile at that question.

In the background, the sound of the monitoring equipment had dropped to a mere whisper. “YES! I will do it, doctor. Anything, you want.” I said firmly, “Yes, anything!”

Proof of Love. An Amazing Moment.

It had slowly begun to sink in, that there before me, was the undeniable ‘scientific proof, ’ if you will. The proof of Jessica’s awareness and understanding and love. The calming effect that my words and touch had on her vital signs, told me she was ‘in there’ and the ‘lights’ were on. She knew me and responded to me, and my voice and presence and my touch had comforted her in a “…remarkable way,” as the doctor had put it. I knew that we would be successful with the procedure this time. Besides, hadn’t Jessica told us, “I WILL be okay? Tell my Mom and Dad that I WILL be okay!” It was an amazing moment, as once again, I was comforted by those words.

I was right, the doctor was right, and Jessica was right. The very next day we successfully removed her respirator and she began to grow stronger and mend. Jessica was going to be,“…okay!”and we counted another wonderful blessing.

Understanding Kacey’s Amazing Dream.

Three weeks earlier, after Jessica’s surgery, as we were sitting in the hospital, waiting for our first peek at her, waiting for the nurse to summon us to Jessica’s room, the memory of Jessica’s words in her cousin Kacey’s dream months before, had all flooded into my mind. I had understood for the first time, the amazing dream and what Jessica had said so clearly, “Tell my mom and dad that I love them and… I WILL be okay!”

“Mr. and Mrs. Walker,” said the CICU nurse, “You can see her now.” I had looked at Renée on that first day of Jessica’s surgery and she was pale and trembling.

“Don’t worry,” I said softly as I looked into her eyes, “Jessica, will be okay. Remember what she said in Kacey’s dream.”

Renée’s eyes had slowly widened and the color had returned to her face. “Yes,” she said, breathing a sigh of relief, “Yes, I remember,” As she whispered in my ear, and kissed me tenderly on the cheek, “I do remember!”

Home Again… after 21 Days!

Twenty-one days after Jessica had sat up on the operating room gurney and looked back innocently at us as she passed through the big swinging doors on her way to surgery, while we had both stood there with our hearts in our throats, wanting to run and grab her back and carry her off somewhere safe and secure, with no more blood and no more tears… she came home again!

Safe again at last, she returned home, but this time with the very real confirmation of our mutual love for each other. It did not seem possible before the surgery but we were even closer in our heart and soul to our baby girl.

Jessica was not an ‘empty shell.’ She was a person who could receive and respond to our love for her. She was loving us back.

The bond of love between us was growing stronger than it had ever been.

Next Week: “Hanging in There… The Long Haul.”

I will continue to share the answers to the question “What happened to Jessica?” every Monday in the weeks ahead. When I have received sufficient feedback and questions, I will add a Thursday episode, as needed, to this blog, focused on answering your questions and comments.

Thanks for your interest.

Jim, Renée & Jessica