Looking for Inspiration

Mark’s pneumonia seemed to be improving, but the fever persisted and the white cell count was too high. Dr. Wright felt changing his feeding tube would improve his condition.

“The nasogastric (NG) tube is not meant for long term and can be a source of infection. Since we don’t know how long it will take for Mark to be capable of chewing and swallowing, I recommend it be replaced with a gastrostomy tube which allows feeding directly into the stomach,” Dr. Wright said.

“It would be his third surgery in nearly three months. I would hate for him to go through it, especially when he’s showing signs of improvement.”

“The percutaneous endoscopic gastrostomy (PEG) procedure is relatively common under these circumstances. It’s a simple surgery, which only takes 30-45 minutes,” the doctor said.

I despised making decisions for Mark. The responsibility was a heavy load that I was unprepared to carry. What would he want? I tried to connect with his spirit. Tell me Mark, what do you want me to say? Do you need the feeding tube? Should I agree to it? I knew I had to be his voice, but I wanted him to give me the answers. I felt and heard nothing.

“I believe the PEG will improve Mark’s condition and lower the frequency of aspiration. He’ll tolerate it better,” the doctor encouraged.

“Okay,” I agreed reluctantly.

Within a few days, Dr. Wright arranged for the surgery at a nearby hospital and ordered a specialized van which could transport Mark in a reclined wheelchair. I rode in the van with Mark. He was unconscious and seemingly unaware of the drive on this beautiful, hot summer day in July. When we arrived at Cottonwood Hospital, two male aides lifted Mark’s stiff body onto a stretcher and wheeled him into an operating waiting room. I meet the surgeon for the first time just minutes before the surgery was scheduled. With a nurse at his side, the doctor explained to me the procedure details. The nurse handed me a thin, wooden clipboard with forms for me to sign, not only giving approval for the surgery, but declaring my understanding of the risks involved. The complications listed included: aspiration, oversedation, wound infection and/or bleeding. These complications I could comprehend, but an injury to the liver, bowel or spleen took me by surprise. When I read hemorrhaging and perforation, or unwanted hole in the bowel wall, which could be fatal, a big red flag shot up in my mind.

Risks—wait a minute. I was only told about how common and simple this procedure was. Now I’m reading about all the unfortunate possibilities and just minutes before the surgery was scheduled. I felt trapped and wasn’t convinced Mark needed the PEG in the first place. I believed with every fiber of my being that life would get back on the normal track—the one we were familiar with.  I couldn’t imagine any other way of life, but these foreign road blocks kept getting in our way.

I looked at Mark, who was unaware of my turmoil. I resented being in this position. I was hoping and praying for inspiration to know what his desires were, but I felt nothing.

“I can’t sign these forms,” I said to the surgeon, handing back the clipboard and forms to the nurse. “I wasn’t made aware of these complications.”

“Oh, the chances of any of them happening are one in a thousand,” he said in a reassuring voice.

“Before our car accident, I could think Mark would never be that ‘one in a thousand’. The statistics mean nothing to me now. How many car accidents happen and result in a traumatic brain injury, causing a coma for three months? If you happen to be that ‘one in a thousand’, that’s all that counts.”

“He’s had the NG tube twice as long as recommended. They are not meant to be used more than six weeks. Dr. Wright has recommended this procedure in order to maintain adequate nutrition for Mark.”

“I understand, but I just don’t know how much longer he will need any feeding tube and I wasn’t told about the risks until now. I need a few minutes to process this information. I don’t want to sign the consent forms under pressure. I need to think about it, I’ll be back soon,” I said as I walked out of the room, leaving the nurse and surgeon with Mark.

I hurried down the hall wanting to vanish from this situation, but not knowing where to go. I can’t believe I just walked out. I don’t want to make one more decision about Mark’s healthcare, but I’m expected to. I wasn’t getting an answer from Mark on what I should do, so I knew my best option was to find a secluded place to pray. I spotted a women’s bathroom, went inside and locked the stall door. Lord, I’m under pressure to sign for this procedure. I believe you know all from the beginning to the end. Please tell me—should I sign for Mark to have the surgery? Does he really need it?

Feeling awkward and anxious about this strange place for such an important prayer and my desperate need for inspiration, I was quickly overcome with a calming sensation. Yes, he needs the surgery. Fear not, everything will be alright., I am with thee.

Thank you for your insight and reassurance.

I walked back to the room with confidence in my decision and the surgeon and nurse were relieved when I told them I was ready to sign the forms. The nurse handed me the clipboard and after my signatures, they rushed off to the operating room.

Ninety minutes later the surgeon finally came to the waiting room where I was told to wait. “The surgery was a success. The reason it took longer than usual was because of Mark’s strong stomach muscles.”

“He’ll be proud to hear that,” I said with a smile. “Mark did a hundred sit-ups nightly to stay fit and trim. He never wanted a pot belly.”

“Well, he definitely doesn’t have one. It’s more like abs of steel,” the doctor said as he shook my hand good-bye.

Mark and I spent a few more hours at Cottonwood Hospital in a recovery room and by early evening the van came and drove us back to Western Rehab. The dreaded G-tube was in place and all went well. Mark survived his third operation and I looked forward to telling him that the surgeon confirmed his abs were made of steel.

 

The Roller Coaster

Roller CoasterEnthusiastically, I walked down the hallway of Western Rehab. I was anxious to see Mark and wondered what new words he might say to me today. After hearing him say, Love ya back” and “I love you,” three times the night before, I was hopeful he’d be even more alert this morning. The hallway seemed longer and brighter and I couldn’t get to his room fast enough. I was tempted to run down the hallway as our children often tried to do, but since I wouldn’t allow them, I decided it wouldn’t be appropriate for me to do it either.

To my dismay, I walked into Mark’s room and the nurse told me he had a fever and his heart rate was fast. He had an infection and the doctor was investigating the source. They pulled the catheter from his bladder and replaced it with a condom catheter in hopes the infection would clear up. Mark was totally unresponsive that day. Even when the kids came to visit that night, there wasn’t the usual blinking of his eyes to their yes and no questions.

We thought the intravenous antibiotic must be working because the next day when my mom brought the kids to the hospital for a visit, he was answering some of their questions with the routine blinks of his eyes. When they kissed him good-bye, he surprised each one with a soft, tranquil, “I love you.” Overjoyed by words that are so often taken for granted, the kids skipped out of the room wearing ear to ear grins, each holding Grandma’s hand. Mark slipped back into his deep sleep.

“I think what Mark needs is a feeding tube placed directly into the stomach through the abdominal skin,” Dr. Wright said.

“I would hate for him to have another surgery. He’s getting better. He’s breathing on his own now and responding appropriately to questions with blinking. I’ve heard him say, ‘I love you’ to me, the kids and my mom. I don’t think he’ll need any feeding tube much longer.”

“Yes, he is getting better, but we don’t know how long it will be before he can chew and swallow. It may take some time before he can get enough food or liquids by mouth.”

Relearning to chew and swallow never entered my mind. These things we do automatically. Wouldn’t it just come back to Mark naturally? Fear crept in, would he have to relearn everything?

Mark’s fever persisted over the next few days and despite the intravenous antibiotics, he developed pneumonia and was moved to the Special Care Unit. The respiratory therapists were giving Mark breathing treatments and regularly rolled him on his side while rhythmically patting him on the back, trying to get him to cough up the mucus. Unconscious, with a feeding tube and oxygen in his nose, I could see the difficulty in his breathing as I observed his rapid chest movement. I knew pneumonia could take his life. He had already lived eleven weeks longer than the neurosurgeon expected, surviving a shunt surgery and a tracheotomy, which both had now been removed. Could he survive another surgery and was it absolutely necessary? He successfully fought the liver infection, why couldn’t he overcome this one? I’ve heard pneumonia called “the old man’s friend” in cases when it cuts short the suffering associated with lingering illnesses or injuries. Was Mark tired of fighting infections while trying to heal from broken ribs, a collapsed lung and most concerning to everyone, his traumatic brain injury? I couldn’t blame him if he wanted to give up. I was tired of being stuck on this roller coaster myself. Not enough ups and too many downs. This definitely wasn’t the ride we wanted or expected. How much more can we endure with no end in sight? Where do we get off and how can we do it?

The only thing I could think of to make Mark more comfortable was to rub lotion on him. I was raised in the dry air of Utah and being an Avon Representative, I was familiar with their skin care products and a believer in their benefits. I rubbed his feet and hands regularly. Like a snake shedding skin, Mark’s callouses were peeling off. His new skin felt baby soft. A nurse walked into the room to take Mark’s vitals and she admired how well the product was working and how good his skin looked. Impressed, she asked me to order her some of that lotion. As soon as she walked out of the room, Mark spontaneously said, “Way to go.”

Where did that come from—my imagination? I stopped rubbing his foot and asked, “Did you just say way to go?”

“Ya. On your sell.”

This was typical of Mark, usually a supporter and cheerleader of mine, but I was shocked by his matter-of-fact reply. He heard and understood the conversation. Although his response was delayed, it came naturally. I wanted to call the nurse back so she could see and hear Mark, but I was afraid he would drop back into unconsciousness before she arrived. I took advantage of the moment by asking questions that required more than the typical yes, or no answers he was used to hearing and answering with the blinks of his eyes.

“Who I am?”

“Barbara.”

“How are we related?”

“You’re my wife.”

“How many kids do we have?”

“Two.”

“Can you tell me their names?”

“Christopher and Katie.”

“What pets do we have?”

He closed his eyes without an answer. I knew he was sick and exhausted. This was the most he’d spoken in months, but I didn’t want the discussion to end. Frantically, I shuffled through the Reader’s Digest I had been reading to him earlier and found the picture of a cat that looked just like ours.

“Look at this picture,” I said as I nudged him. “Who does this look like?”

He opened his eyes again, looked at the picture and said, “Tom.”

“Yes, you remember.”

His eyes closed and he fell back into his deep sleep.

I knew the questions were simple with obvious answers from my husband of twelve years, but still, I was so relieved. He knew my name. He remembered the kid’s names and recognized a picture of a cat similar to one of ours. I literally jumped for joy and ran out of the room to find the nurse.

Anxiously, I told her the extent of our dialogue. “He knew and answered every question. He’s going to be okay; I know he will.”

“Yes he will,” she said, accepting my hope and excitement without trying to change a thing.

I was ecstatic, not only for Mark’s awareness and answers, but that someone besides family believed in us. Just when I didn’t think I could take another moment of the twists and turns and our lives being turned upside down on this roller coaster, I was blessed with reassurance that it would be a worthwhile ride. I just needed to continue holding on for dear life.