Wednesday, October 10, 2012

Flippy Fish Chest

Gosh, there is so much on my mind and heart.  First, on a serious note:
Friday was Wendy's follow-up appointment at Texas Children's, and it was good, similar to the visit six months prior.  Her handful of low blood sugar readings came up, and so we were taught how to use the glucagon shot "just in case," but not as an expected need.  We were prescribed one for the home and one for her school nurse.  Leaving Dr. V, we were en route to a restaurant for lunch when Wendy began to cry because she was so hungry and thirsty.  We checked her blood sugar, and it read, "LO," which is an alarmingly low value, demanding immediate treatment.  It had been about 4-5 hours since she'd had breakfast, and she is a girl we normally feed constantly.  Still, she was conscious, so I was not sure what was going on.  We called the nurse who said firmly that Tic Tacs wouldn't cut it (all we had in the van) and to "get juice into her right now."  We rushed her into the restaurant, gave her Coke, her bg was 163 but then 5 minutes later, was "LO" again.  I called the rep/tech for the glucometer brand, we trouble-shooted, and meter was calibrated, strips weren't expired, were stored properly and my practice was right, but still I struggled to understand how she could have been alert with a bg under 20!  And how the sugar could escape her blood stream that fast!  The nurse told me to monitor her bgs throughout the weekend, with meals and at 2 am, and to call Monday, which I did. 
Yesterday Dr. V called and explained that the nurse did not page her.  The plan is that this Friday, if a bed is available, Wendy will be admitted for a fasting test in a unit a tier below ICU.  She'll eat dinner there, sleep there and throughout the night and into the next 24 hours or longer if needed, her blood glucose will be checked every 3 hours, and more frequently when she reaches a certain low or is symptomatic, at which point they'll draw blood for testing.  She'll get glucagon and will be evaluated for her reaction. 
This is an emotionally difficult test as the studied child goes without fuel for an entire day and is poked often.  But it's safe, medically supervised in a controlled setting, and is necessary to remove the mask that obscures her diagnosis.  We want to understand her body and how to avoid dangerous lows and highs in the future. 
My heart flips like a dying fish, I feel nauseated and have cried on more than one loving friend's shoulder.  Am strong and cheerful for the kids though---she does not know yet.  Stocking up on borrowed movies and new toys for her to get every hour on the hour, hoping time will pass more quickly. 
I love her so much and this trial is the one that has aged me so rapidly this year.  It has given me insight into the whole grey-hair phenomenon.  It has lit afire empathy for all parents going through this heartbreaking ordeal of not knowing what is wrong with their child. 
A friend encouraged me to read the end of Matthew Chapter 6.  I realize now that I mistakenly read Verse 6, and it goes like this, "But when you pray, go into your room and shut the door and pray to your Father who is in secret.  And your Father who sees in secret will reward you."  I have told a few that my praying place, my solitude, is in my bedroom closet.  This verse truly comforted me.  Another friend told me to listen to "There Will Be a Day" by Jeremy Camp, which I love.  God is working.  He does feel closer to me in times of serious concern and sorrow. 
On a happy-bo-bappy note, our parent-teacher conference with Miss Woo Loo's teacher went smashingly!  Her reading is already as if she were at the END of first grade, so soon, she'll be on to second grade level books.  She reads words like enormous, sanctuary, university, etc, on signs without hesitation.  Her writing, however, is BIG!  And her words run together. And there isn't punctuation yet!  She gives us love notes, and I have to kind of fudge it by saying, "Oh, YOU read it to me in your cute voice!"  In math, "She's with us all the way!"  So math is easy for her, too!  Yeah!  She's got James' dual-lobed brain strength!  I have one lobe.  The artsy-fartsy, creative, expressive, emotive, verbal lobe.  The math lobe is about the size of a shriveled prune.  Or raisin.  But I'm okay with that!  Wendy has James' mother's ga-orgeously shaped cheerleader legs, and his two brain lobes.
Lincoln is LOVING school and LOVES Miss Tony.  He goes only Monday and Wednesday mornings, as Wendy did.  He calls his classroom "Miss Tony's house!"  He has two buddies, Tex and Matthew, with whom he is having many play dates!  Sometimes they play together, sometimes parallel, and sometimes, they fight over a toy.  Eh, par for the course, play dates at this age.  He is OBSESSED with Halloween.  Tells us daily, "I wan go HalloWEEN now!"  And we have to say, "Not yet. Not for a few more weeks."  I drive around neighborhoods with the windows down so we can look at houses and declare aloud if they're Halloween houses or not (the ones that are decorated or not).  He wants to be Thor.  He also talks about his birthday often.  He wants a blue choo-choo cake, bubble gum (it'll be Starburts since he doesn't spit gum out--it goes into his food world), Model Magic, Play Dough, Lemonade and a play date.
James is beautiful.  He is worn out with work, allergies and life, but he is beautiful.  He's more handsome, more precious to me than ever, and he's a light.  He comes in from a jog, panting with lips all red, smiling, and I thank God for him.  He's a good man.  A mighty good man.
Pics to be posted later.  They won't work right now.  God bless y'all!

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