Number Four

Excuse the absence of posts please.  Rest assured, there is much good stuff that’s gone on and that I will not forget to talk about in a whole lot of detail very soon, but all that’s been put on brief hold.  Priority shift, if I may.

Ari had her fourth (post-NICU) seizure on Sunday.  She woke up crabby and feeling mildly feverish, so I gave her some children’s Ibuprofen and we set out to run some errands as a family.  Thankfully, Ari doesn’t get sick a lot.  Like my other children, she catches what’s going around and we push on through, encouraging liquids and more rest, but generally not putting life on hold.  Every once in a while, life puts us on hold.

We had a late lunch at Paradise Bakery, and Ari ate like she hadn’t tasted anything that delicious in her life.  Ari sometimes eats well, but more often has to be bribed with singing and silly games and fruit to eat her sandwiches.  This time, she pounded those ripped pieces of sandwich into her mouth before she even had time to swallow the previous one.  I was so excited to see her with such an appetite that I didn’t remember until later that she had a comfort-eating binge just before her last seizure in June 2010.  And then, just like the last time, Ari threw up just as she began seizing.  In case of seizure, Ari is prescribed Klonopin wafers and a Valium suppository by her neurologist, and I am authorized to administer them in lieu of calling the ambulance as a first resort.  I had the meds at home.  Live and learn, right?  So we knew we were in for it, and I called 911 from the restaurant.  The EMTs gave her Versed IM, and we thought that the seizure had stopped, but by the time the ambulance arrived at Phoenix Children’s Hospital, she was (still?) seizing.  They gave her Ativan and Versed again in the ED, and she finally rested after about a 30-45 minute seizure. 

You’d think that I would be used to the drill by now. In a way, it’s true that I am. Certain things fly on autopilot. But, I’ll tell you, there are some things that I’m sure I’ll never get used to. For one thing, the blue. There is something in a mother’s composition that instinctively panics when they see their baby looking blue. If I had to choose, I’d take the terrifying repeated movements of a seizure any day over a blue face. For another thing, the reminder of the fragility of our mortal lives is something that is always there… it’s an awareness that I’d shun if I could, but I just can’t.

Because of the length of Ari’s seizure, she was admitted to the ICU.  She slept the rest of the day on Sunday and awoke for just a couple hours before going back to sleep again for the night.  She was very weak and exhausted and still post ictal, but she enjoyed the company of her visitors and the few sips of water that she was allowed to drink during her short time awake.  Her cultures all looked fine, as did the rest of her blood work, other than a slightly elevated white blood cell count (likely due to the stress of the seizure).  We assumed that we’d be out by the next day, which was silly of us, because we’ve never had a one night stay in the hospital that I can remember.  In the hospital, there’s always something.

On Monday, the something was that Ari had elevated creatinine levels in her morning blood work (normal for her size is about .75, her baseline coming in to the ED was .81, which rose to 1.05 in the morning).  This made sense to me, seeing as this is a common result of dehydration and illness.  She had both, as she was still running a low grade fever and she had been NPO (nothing by mouth) except for a few sips just before bed.  But on the grounds that elevated creatinine also could be an indication of kidney failure, she needed to stay one more night so she could prove that she was able to eat and drink enough to cause it to drop in a 24 hour period.  Prove herself she did, three big meals and nearly a half gallon of liquids later.  She brought her levels down to .50 and kicked her fever in the process!

Gabe and Bella were so worried about Ari, protective of her things (her crayons, stickers, bed), and genuinely missing her during her entire absence.  I thought they would be crying for their mama, but instead they were begging for Ari’s return, which truthfully was so much more rewarding than if they had missed me terribly (even though I was missing them like crazy).

Ari was discharged on Tuesday at 3 pm, which was not a moment too soon for any of us.  I might have lost my marbles if it weren’t for all the support we had too from Nana, Auntie (Nurse) Marci, Auntie Leah, my friends (thank you Erin!), our nanny Rachel, and my amazing husband, Jake.  I often hear myself talking about how life passes you by too quickly.  Two days can fly by in the blink of an eye.  But then we have a couple days like these, it makes you stop and think about how two days can have such an impact too.  For better or for worse.  These two days were hard, but it made me stop my fast-paced life and devote energy to what matters.  It allowed me to stop and care for my child, not just take care of my child, if that makes any sense.  It also made me so grateful for  having my whole family together, when I got to be reminded of the horrible feeling of a fragmented life with pieces of my heart separated by necessity.  I felt blessed to be their mom, not like I normally do, but really honestly grateful and happy.  And for a silver lining, that ain’t too bad.