What an eventful month!
Our 16-year-old and I spent two weeks in Arizona, five days of that as a hospital inpatient, three days doing daily hospital pain IV infusions on an outpatient basis, and a bunch of time running from one outpatient specialist to the next. We left with a long explanation of the “perfect storm” of exceedingly rare conditions and circumstances that piled upon one another to cause our past six months of terrifying medical issues.
In short, R has a “spot” in her brain that is stable, non-aggressive, and has likely been there for years (possibly since birth). As her body has grown and changed, the migraines she had had at least since toddler-hood, have been exacerbated by altitude, so when she started regular drop episodes (faints) in September, this was actually a very rare migraine complication!
In fact, every one of her symptoms, up through temporary (minutes-hours) deafness and blindness can be accounted for by migraine, according to her neurologist at a major medical center. The migraines have messed havoc with her autonomic system, so the prior diagnoses of POTS and autonomic nephropathy stand, we just finally can add the “why” behind these diagnoses.
That brings us around to elevation. We only live at 4,700 feet above sea level, not like Denver, the “Mile High City” or anything. She was conceived, born, and has lived her whole life here. So why the sudden onset of symptoms of this magnitude?
According to our doctor, who treats astronauts for both NASA and JAXA (Japan’s aerospace program), as well as mountain climbers who brave heights like Mount Kilimanjaro, their practice starts seeing chronic altitude sickness in folks who live at as low as 3,000 feet. He measured R’s blood gasses and found they were scarily out-of-balance, even a week and a half after being down at low altitude.
The poor kid has likely never handled this altitude properly, and as her body has grown and changed, her blood gasses finally became so imbalanced that the only way her body could signal the need for help was to take her migraines and create a huge mess. Pair this with that brain “spot” and a couple other more complicated issues, and all her symptoms are accounted for.
We came home from this trip both on higher doses of her existing migraine medication, and on high altitude medication designed to bring her blood gasses back into balance.
She has not fainted once in the nine days since she started the altitude treatment. Her eye sight and hearing (the longer stretches accounted for by altitude) are continuing to improve as well.
Folks, with both blindness and deafness, R was one step away from coma, two steps away from death. As my pastor put it, “there was only one direction this thing was going.” With cortical symptoms like this, the organs and nerves are still fully capable of function, but the brain looses the ability to process or recognize the information it is receiving. The spontaneous regaining of her sight and hearing on February 18, was all God!
We missed her morning dose of medication yesterday and she had a hard (head-achy, nauseous, moody) day and a horrific night last night (hardly able to sit up in bed, much less stand or call for help). Her pulse never dropped below 120 between 11pm and 7am, with spikes as high as 159! Thankful for the pulse monitor her doctor has her on recording her nights now. There is now no doubt, whatsoever, that these new meds are making a tremendous difference!
In the meantime, my in-laws accompanied our 19-year-old all the way back to Rochester. He received a diagnosis last week – Chronic Fatigue Syndrome, but he tests clear of all the viruses I chronically carry that trigger my CFS. While I have astounding results with anti-viral medication, his battle has no medication available.
We continue to pray for renewal for our first-born. J’s and R’s symptom are quite different, but in many way he is more debilitated than his sister, unable to attend church, job, school, or drive a car. He has been physically devoid of strength, often unable to walk through the house from bed to kitchen, since Thanksgiving. We plan to have him tested by our high altitude doctor in July, just in case there is any causative overlap for our son.
I will be leaving for Mount Hermon Christian Writers Conference tomorrow morning. I’m SO EXCITED! I’ve been counting down to this, our 50th anniversary, for two years now.
A little over a week ago, it was looking like I would have to cancel because of R’s health. Later that day, we started on new meds and our life made a dramatic change for the better. I will be teaching a workshop on Praise, Worship, Jubilee! and co-teaching another workshop, on writing critique groups, with one of my dearest friends, Deb Gruelle.
- Rick, as he does the “single dad” thing for ten days (the conference itself doesn’t start until Friday, but Deb and I are spending a couple days together before hand, because we haven’t been able to work together on our presentation yet, due to all my medical trips over the past six months, plus travel days).
- My older kids as they struggle with health issues.
- R and younger J as they return to school on Monday, after spring break. Since Thanksgiving, I’ve gone to R’s school every day so that I could immediately respond to all her medical crises, so it’s a stretch for me to not only not be at the school, but to be out of state.
- Deb and I as we prepare our workshop, travel, and present. Physical strength, protection from illness, mental clarity, spiritual receptivity to God’s leading.
- For God’s Holy Spirit to work mightily throughout the entire conference and in the hearts of all who attend.