It has been 7 weeks at 2 days since our 15-year-old’s saga started. We’ve been in local ER 4 times, twice resulting in 2 night local admissions, once sent home, and most recently the local ER visit resulted in her getting ambulanced to an out-of-state hospital for a 3-night stay last week. (The ambulance made it in 4 1/2 hours in the middle of the night with clear weather, but drive has taken as much as 8 hours with bad weather and traffic.) We also flew ourselves to a different children’s research hospital three weeks back, where she spent two full days in about 10 1/2 hours of outpatient appointments, followed 3 nights inpatient.
Between all these hospitals, I’m happy to say we have ruled out pretty much every imaginable life-threatening issue we would need to take imminent action to address.
We know a ton of things that are NOT wrong with our girl, and for each we are very thankful!
She has been off medication for over a week (last dose was a week ago Wednesday) and fainted again Sunday night, twice Tuesday (instigating the ER trip that resulted in Stanford ambulance), but not at all since. Perhaps we are dealing with something in the autonomic world??? (Yes, we started with a tentative POTS diagnosis on our very first hospitalization, then that has been repeatedly questioned, medications have been tried with severe complications, and now we seem to possibly be circling back around to something potentially related to the original diagnosis.)
We anticipate about three more months of intensive testing, likely to unfold in about four different states, before we expect to have clear answers. I’ll probably not talk much about specifics, or answer most questions, as it is all rather overwhelming, confusing, and medical advice is often contradictory.
What I do know, what we cling to now more than ever before, is that God is sovereign, that He has a good plan for our daughter and for our family, and that He is loving, just, and wise.
Current issues are fainting (though not in the past six days – thank you Lord!), blindness, hair fall (but most of her bald patches are filling back in with new growth), some recent hearing loss (as of a week ago Sunday), and fairly intense cognitive/memory issues (since Tuesday, Oct. 23rd). Tuesday morning our daughter initially did not even know her own name, when the school was trying to wake her from her first faint. After that, she knew one classmate, but only the name and not why she knew the name or who this person was. It was a hard struggle, but she could piece together who Rick and I, and both of her brothers (though one only by nickname and not given name) were.
The one and only name she did not struggle to identify, came about an hour after initial faint. I asked, “Who is your Savior and Lord?” Without a moment’s hesitation she beamed, “Jesus!”
Our girl has gradually regained more and more grasp on reality, remembering a few past events. She currently has about an 80% grasp at retaining most new-to-her information as we tell it to her. She remembers next to nothing of this entire past couple of months, does not remember having had either surgery earlier this year, or that she has ever broken any bones – she’s broken 8 for the record.) She does not know her favorite color (Rick says blue, I think it was green) so has decided (remember, she is blind, so this is a memory choice) that she now prefers yellow.
We eat soup and tacos each several times per month; she did not know either word and we had to explain both. In most things she acts like a mature nearly 16-year-old. Random words and memories are totally non-existent to her. And we are dealing with a lot of breakthrough 4-year-old type questions and emotional behavior.
Please pray as Rick and I and her school, as we start arranging accommodations to face these newest challenges.