What a week.
After an amazingly “stable” (for us) month with very few drop episodes (faints), we are in a storm! R. was 12-days episode-free when she went down Monday afternoon, the first of eight document-able drops in these past 4 1/2 days.
We’ve been in one ambulance, and two emergency rooms, for her. My baby girl (age 16) got poked and prodded with 10 needles over two days, just to get one tiny blood sample and run a single liter of fluids. (More tiny needles too, because EMTs always do a finger prick to verify stable blood sugars, but those are nothing like the 7 failed IV attempts!)
We managed to create emergency code calls at school every day we attended school this week. The one day we didn’t go to school, we visited the hospital for a planned procedure, and she passed out in the food court there, creating a hospital code call with six emergency responders immediately jumping into action.
The school also had to call an ambulance for me on Monday after her first event. (I couldn’t find her when the emergency announcement went out Monday, so ended up “running” – if you could call it that in my post-stroke condition – down five different long school hallways before I got to her.) I spent three hours in urgent care, had a steroid shot, two breathing treatments, and am now on a week of home Prednisone and a shiny new inhaler, for exercise-induced brochio constriction. God has been gracious in allowing me to be there for R. all week, in spite of steroids that typically are emotionally crippling, and ongoing asthma attacks.
What we are thankful for today:
1. R. can still see.
2. R. can still hear.
3. R. continues to wake up.
Fifty-eight times over the past 8 months and 3 days, she’s gone down, but regained awareness within an hour and a half or less (sometimes in as little as seconds, often within minutes) each time.
Every time we see those beautiful brown eyes flutter open, or hear her tired and frustrated “Hi,” upon comprehension of what has happened again, I breathe a prayer of relief and utter thanks.
Every. Single. Time.
1. This situation is progressing. We have some of the very best doctors in the world currently trying to crack the mystery. God already KNOWS exactly every detail of what and why. He can bring hidden things to light. In a word, He can heal.
2. R. is a trooper, but she is hurting.
This is a brilliant, talented, funny, amazing young lady, who no longer is allowed independence to even shower or use the restroom alone (as she has gone down doing both). Driving, preforming, babysitting, summer camp, pretty much any normal teen activity, is totally out of question right now.
Our historically straight-A student has missed so much school this year, that school administration and teachers are working creatively to help her even earn high enough grades to even qualify for course credits so that we can count some of her sophomore studies toward graduation requirements.
Physically, she has a migraine headache that has not dropped below a 4 pain threshold (often much higher) since February 18.
She is utterly discouraged, embarrassed, and overwhelmed, in addition to the terrifying unknown and bodily suffering.
3. Our entire family is feeling hard pressed. R’s bothers (19, 13) are watching their sister get worse and worse. We all are feeling helpless, are fighting hopelessness. It is scary and confusing.
Our oldest has his own mystery medical struggles that have kept him primarily bed-bound since last fall. While the battle isn’t as intense, it is a continual struggle, without many more answers for J. than R.
Rick and I feel at such loss for the next steps God would have us take. In one sense, our marriage has been driven closer than ever, as we cling to each other at the foot of the cross. In other ways, the pressure on our marriage is so incredibly intense and we struggle in many ways!
“Restore” has been my word for this season. It is my heart’s cry. Would you please join us in praying for this?