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.

 

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7 thoughts on “Looking for Inspiration

  1. Abs of steel. I loved that part. And thanks for sharing how you made your way through yet another crucial decision. I’m glad you didn’t really have to make it alone.

  2. Pingback: Finding the Silver Lining | Uniting Caregivers

  3. As I was reading your words I was thinking back 9½ years when the Oncology Doctor told me if I don’t start maintaining my weight I will need a G-Tube. After a month of radiation and Chemo I wasn’t eating enough and lost 50 lbs. For several days I was dragging into my radiation appointments from the lack of nutrition. I walked into the Oncology doctor’s office and told him I needed the feeding tube we talked about. Within two days I had my new feeding tube. I’ve had one ever since. My biggest obstacle was dealing with aspiration. I drank my food every four hours and when I tried to go to sleep, I would wake up every 15 minutes coughing up crap. I finally learned that I had to sit up for 30-60 minutes after I ate to keep from aspirating. I finally took over a comfy chair in the living room and that’s where I slept every night for more than a year.

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