Thursday, March 6, 2014

Bringing Home Chocolate Milk and a Diagnosis...Again.

We have been in the trenches as of late.

My brain is already fogged with pregnancy, home building, and being uncharacteristically unorganized in ALMOST every area of my life.

On top of all of that, there are the dealings and stresses that come with having two small children who require food, clothes, baths, attention, and frequent rides to various activities and appointments.  Not to mention, breaking up fights, picking out movies, changing dress up clothes, playing "Hungry Hippo" referee, and trying to make sense of the random tear-filled, complete and utter meltdown; happening in public, in private, or (my personal favorite) in front family members whom we currently "room with".

To say that I expect a high blood pressure reading at each pre-natal check up is an extreme understatement.  (my BP is fine, by the way.... as of yesterday)

If you know me, at all, you know I am a bit of a germ-a-phobe.  Which at this point in time, I would like to say is a misnomer.... I like to think of myself as having more of an appreciation for germs than a fear.  I get them.  I know how mean, strong, lasting, and scary they can be.  I appreciate how awful they can be.  My germ awareness came about after a few years teaching small children, followed by my baby being diagnosed with a condition that compromises her immune system.

After her diagnosis at 9 months and our 6 night hospital stay, we left with a lot of information, books, gear, toys and clothing from the gift shop, and with one bit of information that stood out to me like it was surrounded by a flaming hoop, in neon letters, with fireworks and glitter and a soundtrack:

"You should be fine unless she gets strep throat or the stomach virus... those two could send you to the ER pretty quickly."

Enter: my hand washing, Clorox wiping, and Lysol spraying regimen.

Five years later, we have survived multiple bouts with the stomach virus, among many other illnesses so, please don't allow yourself to think my efforts have kept us illness free thus far.  Although, I think it has kept us from getting sick often; even with a weak immune system and a little sister that HAS TO touch everything... every.thing.

This Winter has been nasty for everyone, I know.  The snow, the ice, the germs, the doctor visits... gross gross and more gross!  (My husband always says I'm reptilian, and I've never felt more so than Winter 2014.)  As expected the dreaded stomach virus started it's tour around Bug's school about a month ago.  I was on *high alert*... level Red, or whatever the worst color is for a terror attack alert.  We had our armor in full effect.  We did probiotics, Lysol the backpacks, wash hands, wash clothes and coats VERY often.... ALL the crazy person things you are thinking of, I did them and found comfort and pride there in my wintertime crazy person place.


*Diabetes Education Moment:  When people with type one get a virus it makes their blood sugar go up.  They still need insulin to combat the high blood sugar, but with strep and GI issues they are usually unable to eat so it gets tricky when deciding to give insulin.... worrying that giving insulin to correct a high blood sugar will give her a low that you won't be able to fix because she can't keep down the juice or the sugar to bring her back to normal.  When the blood sugar is high, her body makes something called ketones:

(from webmd)
Ketones are substances that are made when the body breaks down fat for energy. Normally, your body gets the energy it needs from carbohydrate in your diet. But stored fat is broken down and ketones are made if your diet does not contain enough carbohydrate to supply the body with sugar (glucose) for energy or if your body can't use blood sugar (glucose) properly.

Ketones leave your body through urine, and to make urine you require hydration.  If you are dehydrated from a virus and your body doesn't make any urine, the ketones just camp out and make ACID in your body.  (does that sound as scary to anyone else as it does me?!)  If you can't get rid of the ketones and you can't rehydrate, your blood becomes very acidic and starts to break down the fatty acids, and your body begins to break down.... everything in your body hurts, your heart rate elevated, your breathing is labored, you start to vomit and you have now gone into a complication called Diabetic Ketoacidosis: DKA.  

DKA untreated results in death.  

This concludes our Diabetes Education Moment.* 

There will be a time in your life when all at once, a great fear is realized and materialized too quickly for you to blink and understand.  And when you do finally blink; it's a slow blink.  When your eyes are closed, it's gone; the fear, the sadness.  And then your eyes open to a your life in front of you.  And you see it differently; the awful and sad, scary, great realized fear.  For me, this is a reminder of the promise of Heaven and the end of all the heaviness and the grey that you want to ignore and forget with every fiber of your selfish being.  Breathing DEEPLY with something along the lines of "I didn't want this cup Lord..."  or maybe if you're me: "this is awful and I hate it and it's really just not fair".

On Sunday, Bug woke up with a stomach virus.  One I had been awaiting due to the amount of cases going around her Kindergarten class.  All the other moms were saying "It's not a big deal, she got sick one or two times and then it was over."  So I was ready.  And true to trend: she got sick two times and then was fine!  Her blood sugars were not crazy high, her mood was great, she seemed fine and by lunch time she wanted to go for a walk.  I left her in front of a movie and went downstairs to work on the laundry and attend to the other human I raise, whom I had sequestered to another TV watching situation, in hopes of keeping the virus in one location/human.

When I got back to the patient 30 minutes later, things had turned drastically.  Her face was grey, she looked listless and was asleep.  I checked her blood sugar and it had jumped up almost 100 points in an hour.  I gave her some insulin via her pump and watched and prayed and waited.

Over the next 12 hours she got sick every 15-30 minutes as her blood sugar climbed quickly; not responding to the insulin corrections we were giving every 2 hours.

I called the Endocrinologist on call to make sure we were doing everything right.  I was so confused!  How could this quick "not a big deal" virus have turned into THIS?!  He said we were doing everything right but if her blood sugar continued to not respond to insulin, we would need to go to the ER.

Doesn't that sound so drastic?!  Of course I brushed it off (slightly) and decided she needed a shower and we'd be fixed!  The Emergency Room seems so serious and final!  The ER is where you go when you aren't breathing, or you break a limb, or your bleeding so badly they have to cut your clothes off to get to the wound to hold your body together.... too much TV watching on my part???

3:30 AM rolled around and Bug woke to get sick and I checked her blood sugar, getting a 595 reading. (normal blood sugar is 180)  I woke my husband to look at her.  She looked so skinny and her skin all over her body as a weird grey color.  Her nail beds were blue and purple and there were circles under her eyes that were a dark grey/navy color.  Her blue eyes were more blue than I've ever seen them; (another side effect of a high or low blood sugar in her specific case.)  She was completely out of it and making no sense... babbling about random things and asking for warm milk.  Her breathing was labored and quick.

We packed a bag and carried her to the car, too weak to walk.

By 6:30 AM we were settled in our room in the ICU and I finally felt relief in a strange way.

I can't fix it.  But all these lovely smiling people in matching clothes seem to be extremely confident and have it all under control.  I sat at the edge of her bed, remembering how tiny she was when we were there the first time 5 years before.

She laid still, almost lifeless, with her eyes closed while they poked and prodded and asked her what day it was and what her name was.  She was completely emotionless but managed to open her eyes long enough to ask for chocolate milk multiple times and "is it almost time to go home?"

A full day of worry, number and level quoting, advice and questions, doctors and nurses, visits from friends and so very much hand washing.  I laid down to sleep that night on the foam-cushion-bed provided, feeling the same emotion I felt 5 years ago, in that same spot.... total and complete defeat and exhaustion.  I did everything right!  How did we get to this point?!  All at the same time, grateful to be safe and no longer in charge of keeping her alive.  I watched the nurses come in every hour to take labs and check blood sugars while she slept, amidst the beeps and honks and constant noises of the ICU.

If you have ever reached the point of total defeat, it's hard.  It's hard to admit you are not enough.  It really really stinks to know and feel inadequacy on an (almost) daily basis.  But as soon as you do; as soon as you throw your hands up and say "TAKE IT, LORD, BECAUSE I CAN'T",  as soon as you stop trying to do it all, or be enough, or make it work for you... as soon as you just flat out lose and submit to the mystery of the Will of God; that's when you win.  You WIN.  You close your eyes.  You let go.  You breathe again.  Your heart remembers to beat.  You find rest in your loss and in knowing Someone else, Someone greater controls your days and nights, and will take on your great fears for you.

I finally gave in at 4:30am and went to sleep.

With the morning she woke with pink cheeks, asking for food and her daddy.

The rest of the day was full of more tests and pokes and blood draws, naps and jello, scrambled eggs, and yes, chocolate milk.

By the afternoon we were packing up to leave the ICU, and the hospital all together.  Still weak but happy to leave, she asked to get her nails painted on the way home.  Her daddy, of course, obliged.  We arrived back at her grandparents' house with red sparkly nails, flowers, balloons, and big hugs.

We got home and I jumped back into laundry and cleaning up all the things we brought home from the hospital; for fear that if I stopped to think, it would all come tumbling down and I would melt.  I tried to take it all back again.  The control, the order, the need for a normal.

My husband could sense I was on the edge, gave me a huge hug and I finally cried.  I couldn't breathe or talk or stand and could only get out the words "that was awful".

That is the only way I can describe it.  Watching your child's body be taken over by a condition you thought you knew and could control.  It was almost like being diagnosed all over again.  To re-feel the fear and uncertainty.  To remember it all again.  Remembering how serious it is.  Remembering how much I hate it.  Remembering that she will be living with it forever.  Remembering I can't fix it or take it on my own.

It WAS awful.  But it's over now.  I hate that it happened and that she has a "chronic illness" but I'm thankful in the midst of it ALL.

Still weary of germs and a do-over, and conscious of my defeat and my limits; I am grateful for the reminder of Heaven, thankful for the opportunity to see a light in a dark place, and in awe of how the Lord shines through those bright blue eyes.

He cares.  He loves. He takes it all because I can't.

Not that for one second I deserve it; but challenge accepted.