2016-05-10 - GBS Devotional
Prepositions and Guillain-Barre Syndrome
First, I would like to thank the many readers who wrote to tell me that God had used my first and frank GBS devotional to bless you. That is humbling, and I am grateful. Next, I would like to share some of Richard's and my experiences thus far. These devotionals will be what some would term our testimony.
We have not yet reached a point of being thankful for the daily nightmare that is GBS, as most people wouldn't have at this point, when they are in the thick of a slow and painful process. But when you look through the lens of another preposition, "in," there are some people and things for which we are thankful in the situation. Over my next few devotionals, I will share some of these gifts.
In the beginning, Richard thought he was having a stroke, so instead of driving to the Level 1 Trauma Center 45 minutes away, I drove him to our own small-town hospital, which was only 10 minutes away from our home. We knew that if this were a stroke, immediate treatment was vital. The ER physician in our little hospital did extensive manual test, interview questions, and several CAT scans of the brain area - and ruled out several conditions. After we had spent seven hours in that ER, going from one test to another, the doctor said "I'm not going to sugarcoat this. I believe that you have Guillain-Barre Syndrome, a serious neurological disorder. Most people do recover, but it's a very debilitating and slow illness." Most medical professionals are amazed to learn this is where he was first diagnosed. The odds were against a rural doctor diagnosing this; it's quite rare, with a 1 in 100,000 rate, and too often, patients aren't accurately diagnosed for a couple days or even weeks. This is a lifetime, for GBS. With GBS, a speedy diagnosis is imperative, in order to prevent the upward spread. Because of the unlikely diagnosis of this rural doctor and his phone calls to a major medical center and a neurologist, within 24 hours, Richard was connected a top-notch neurologist and had started plasmapheresis, a process similar to dialysis, except that all the plasma is replaced with healthy plasma. He already had some numbness on his tongue, that is just now decreasing. And we and our medical team believe that it was the instant diagnosis and speedy protocols (Plasmapheresis and IVIG), that prevented the upward spread, and thus kept Richard from ending up on a ventilator as 1/3 of GBS patients do. We are thankful that the doctor in the ER that Saturday, happened to be one who was courageous enough to "go out on a limb" and "get the wheels turning" with a rare condition - so that Richard could receive the care he immediately needed. The hospitalist at the big city medical center wrongly disagreed with this doctor, and treated Richard for low sodium until he saw a neurologist and got a spinal tap, so without our country doctor's intervention, Richard could have ended up in even worse shape.
After a stint in the otherwise awesome medical center, he was transferred to a rehab hospital. Some of the staff there treated him as if it were just a normal Physical Therapy patient; in our exit survey, I highly recommended that all caregivers be educated when a patient with an unusual and rare condition is present, and I hope that will benefit future patients. However, his Physical Therapist was someone who was very familiar with the condition of GBS, who understood and said that Richard's PT had to be different, with more breaks, and that he needed more assistance because of his paralysis. We'll always be thankful that of the PTs at the facility, Richard had the one the most familiar with Guillain-Barre, and who took a special interest in his case. Our current PT also has extensive knowledge, and we are thankful that he is honing in on the most important priorities at this point: Exercises to work toward standing.
Though we have a wonderful insurance company whose employees have "gone beyond the call of duty," once a GBS patient is released, there are plenty of out-of-pocket expenses, for supplies for everyday care until he can do things for himself again. Since I'm not supposed to leave him at all unless absolutely necessary (and I wouldn't want to), I can't afford to be driving all over the place for necessities, so we are thankful for the availability of online shopping (not to mention a better inventory than in person) and we're thankful for the ability to afford these items. I worry for those who are poor; I don't know how they can afford to deal with something of this nature. Those of us who are able to help others, need to be mindful of this responsibility, to reach out to those in genuine need, when we can help them. (See Philippians 2:4, 1 Timothy 6:17-19 and 1 john 3:17.)
To be continued.
Janice P. Moser
All scripture references are from the New American Standard Bible (NASB) unless otherwise noted.