Never as planned

Life never seems to go as “planned”.

Yesterday was a good day. I felt accomplished. I got a new project underway, met with a client, who is fabulously nice, and wrapped up a lot of things at home. Bob got home late, but we still had time to watch Brooklyn 99 and giggle as Charles’ glasses (that are just like the ones Bob’s granny use to wear). We tucked into bed with a good day behind us and then…Bai….oh, Bai. Bai started seizing. Ok, one or two, no big deal, but she was continually seizing. I keep cool in these situations. Staunch and dutiful. I’m sure Bob wonders where my emotion is, but I simply don’t have time to let that clout my judgment as to what needs to be done.

So, I go to work doing the things that I hope will help her. Task to task to take my mind off the deep despair I feel every time I watch her body wrench  into another, uncontrollable, seizure. Since her little baby body did these I have watched her suffer these malevolent things, or as we call them “yuckies”, powerless. Too many yuckies came to pass last night. Seizure after seizure ravaged her body and then the vomiting started.  Her little body rung dry. Around 3 this morning, as a last ditch attempt to get her to snap out of this pattern, I put her in the shower. She sat like a rag doll, slumped, and lethargic. She didn’t even try to steal the water hose or spray me. Trust me, she loves to do this just to see and giggle at my reaction. Her arms laid lifeless at her sides.

She has not had this many consecutive seizures, since she had her brain surgery in 2001!

Now what. We pulled out an emergency medication, from the bottom of the diaper bag, called diastat. This is medication that you are to use in worst case scenario with seizures that last more than 5 minutes. We were defiantly in that stage. The stupid medication was expired. Of course, cause we have NEVER had to use it. I have spent today trying to attain a non-expired dose (should be here tomorrow).

We went to the internet and read what to do if we administer this medication. It is basically rectal Valium. We opted to not give it to her at that time. The side-effects seemingly to great. We placed her in our bed. Our giant, almost 16 year old, who was seizing and throwing up and we pretend to sleep next to her. Pretend. Key word. Her breath shallow, her eyes distant. Me in my staunch distant world to protect my heart and my brain and Bob in a fit of fury cause he can’t fix it, God love him, it is the most helpless feeling in the world. We are the only two people who really get this desperate feeling as a unit. WE suffer as she does. We wrench and break as she does.

Finally morning arrived. Morning allowed doctors to be contacted and many many options thrown at us. The ER was one. Nope, we knew if that was the option, it would have to be the one in Indy. During all the phone call fielding, we continue to watch her seize but now with her sister’s as an audience. A room full of broken hearts. After lunch we got the call that the local pediatrician would see us. A strep test done, influenza test, blood work taken, ears checked, and urine cathed out for a culture. We even did an x-ray of her chest to make sure she hadn’t aspirated during all her vomiting episodes and seizures over night. Her blood work came back with a high white blood count and way too low potassium level. Her urine was so thick, they opted to give her an antibiotic shot in BOTH HER LEGS! At least this made her mad. At least this got our out-of-it little girl to give some sign of fight. Nearly 3 hours after arriving at the Doctor’s office we emerged, starving, tired, no exhausted and all the “plans” for the day shot. We needed gas, Bai needed potassium and we all needed FOOD!!!

Here I sit at home, the strongest little girl I know laying in her bed. She has barely eaten today. She looks like she is swimming in and out of consciousness. Her eyes set in a far off place. Her typical joys, forgotten. She feels crummy and we have done all we can today to fix it. Antibiotics – check. Potassium – check. Every test we could think of – check. Monday. COME ON MONDAY! We need these festering things out of her back ASAP. No more fevers, no more seizures, no more vomit. Come what may with the consequences of these rods being gone. I want my happy little girl back.

So, we will head to bed (soon) tonight and possibly not have to pretend to sleep. Two consecutive hours of sleep at this point, would feel like a lifetime. We repeat blood work tomorrow to see if her potassium levels increase, but she has to EAT for that to happen (and keep it down). 3 more days to fight. 3 more days to get through.

Here’s to the “plans” we all make, may we laugh together as they fall apart.

For Her.
Bobbi