Talk about frustrating…and a little scary. By the time I was admitted to a room, the neurologist had gone home for the day. “She’ll come by tomorrow,” I was told, as if she was a friend stopping by for a visit. The “squishy” feeling was spreading; I now felt it in my upper legs and abdomen. I was not allowed to get out of bed because I had become a fall hazard. Having to use the bedpan was demoralizing.

More lab work was ordered and the two nurses who came in to “find a vein” seemed to be enjoying each other’s company. They promised to make only two sticks before resorting to calling in their supervisor for assistance. Each took a turn – sticking, prodding, and prodding some more – to no avail. For some reason they seemed to find this amusing, snickering about their inability to draw blood. Maybe they were nervous. I was gasping in pain and had reached my limit of sufferance.

“This isn’t a comedy show!” I blurted. Immediately they stopped laughing and looked at me in dismay.

“We’ll go get the supervisor now,” one of them assured as they hurried out of the room.

The supervisor was successful on her first try. Then she hooked up some more IV fluids. “Let’s get these  into you and you’ll feel better,” she assured.

I wondered if it was still presumed that I was only dehydrated.

Repeatedly, I told the nurses, “I am getting worse,” to which they smiled, replied, “Okay” and walked out the door. I prayed myself to sleep, making sure in my heart I was ready if Jesus called me home. Remarkably, I was able to get a few hours of uninterrupted rest before waking with a start about 6 a.m. I told Rachel (who had stayed with me through the night) that I needed help. A sign on the mirror read, “Rapid Response Team” and included a number to call if a patient (or family member) felt they were not receiving the care they needed. Rachel called. My husband had just come in (I had convinced him to go home and get some sleep the night before) and my son-in-law Steven had stopped by on his way to work.

Feeling really strange, I decided to utter what I considered may be my last words. Grasping both Rachel and Steven’s hands, with Randy peering at me from the end of the bed, I told Randy I loved him and said I was sorry for not being a perfect wife. I declared my love for the children, children-in-law and grandkids and quoted one of my favorite scriptures, “I have no greater joy than to know my children are walking in the truth.” (III John verse 4) Rachel started crying and I tried to comfort her. She told me later that my skin was ashen, cool and damp and she thought that indeed, I was dying. I could hear Steven praying for me. Randy looked lost. At that moment a lovely female doctor of Indian descent came into my room and gave me hope. I implored her to do something. She did. Her first action was contacting the neurologist, who was with a patient requiring immediate attention, but would see me soon.

From this point, my memories of the next few days are indistinct. I vaguely recall hearing that a MRI had been ordered to which I replied that I don’t do well in enclosed quarters and would require some sedation. They took me seriously. Ativan was administered and I barely recall the next twelve hours that included two MRI’s and being transported by ambulance to the neurology center at Duke University Hospital. Guillain-Barre’ Syndrome was now being considered as a diagnosis and the local hospital stated they were not prepared to diagnose or treat that condition.

This was my first ambulance ride ever, and I slept through it, remembering only the grandkids waving good-bye to me in the parking lot. My new room was large and high-tech. Another MRI (my brain and neck had been covered; now they wanted my lower spine) was ordered. Nerve conduction study. Lumbar puncture. I refused the Ativan that was offered as I wanted my mind to be clear. Fentanyl was administered for the lumbar puncture (spinal tap).

Rachel held my hand throughout. Just in case you are wondering, Randy was also nearby but out of sight. Guess which one of them has the caregiving gift.

When the resident (Duke is a teaching hospital) who was administering the lumbar puncture advised me, “I’m in but not quiet there,” I prayed out loud, “Jesus help him.” Almost immediately he exclaimed, “I’ve got it.”

At that moment I was reminded that God was in control of this situation and there was purpose in my GBS journey; the ensuing days would support that comforting assurance.

The protein in the spinal fluid confirmed the diagnosis go GBS and the recommended and very effective treatment – IV immunoglobulin – was administered over several days.

Still unable to walk, I was thrilled with an incredible piece of equipment known as Sara Stedy that was used to take me back and forth to the bathroom. My head and arms still bobbled like Jell-O, but a bedpan was no longer required.

After five days in acute care I was transferred to their rehab facility for two weeks. GBS used to be treated in the ICU, but so many improvements have been made in treatment that is usually no longer necessary, except in advanced cases. The doctors told me that mine was detected early. And I just have to tell you this: that ambulance ride from the hospital to rehab – about 3 miles – came in at just under $6000. No joke. Definitely no joke.

I have been known to say, “I would rather die than be a patient in a long-term care facility.” That is a direct result of working in one and knowing what goes on. Fortunately, my knowledge and experience enabled me to be an advocate for myself; and besides, I really wanted to be able to walk again. That goal broke down my resistance. I cannot say enough good things about my rehab experience – not perfect, but I will share those thoughts next week.

Praise God! Prayers went up for me from around the world – our “family” at the orphanage in India fasted and prayed. Family (my granddaughter Adara told her mommy one day that she had gone to the mud room three times that day to pray that Grammy would again be able to walk down to her house), and friends not only prayed, but many actually wrote out a prayer and sent it to me. What an unbelievable blessing! I was able to share God’s love with hospital staff and other patients. I kept my Christian radio station on practically all the time – and received so many positive comments. You know, I don’t really believe that most people want to leave God out of our culture; they are hungry, although often do not realize what that hunger is for.

After only six days of rehabilitation therapy (physical, occupational and recreational) I had met my goals and was released with a walker “for insurance.” At my first outpatient physical therapy session two days later, I was thoroughly assessed and given an all clear. And again, I say Praise God! I know He touched me in answer to prayer and allowed me to return home, intact, from my GBS journey.

Next week – some important concepts for caregivers that I learned on my journey. Available November 12, 2018.