Be Joyful in hope, Patient in affliction, faithful in prayer. Romans 12:12
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Thursday, August 23, 2007

It takes a pharmacy......

Tonight the timer went off or should I say this morning? It's actually 3:31 a.m. so yea I think that constitutes morning. No matter because this reoccuring event is nothing new nor spectacular in and of itself.

Its just an egg timer afterall given to me by Katy(Another one of my dear friends who also happens to be one of Jophies aides)



It was 7 years ago that we received this little gift and would you believe the battery is still going strong? Jophie had just gotten home from a 6 month long hospital stay housing not only his two most recent resident tenants at that time(Meet Super Bugs Staph E. and Enterobactor) but, he was also sporting his newest accessory in the form of a Triple Lumen Central line. It is aftearall the latest fashion for all special little boys.

It became apparent to not only me but more importantly to the wonderful girls that help me care for Jophie that...

  • I was very tired
  • That hanging THREE different kinds of bug juice every 2 hours around the clock was not going to be an easy task by no means
  • Did I mention I was tired? Ah yes I hadn't slept more than an hour at a time for nearly 6 months......really
  • And more importantly....The bug juice was not his only medication

Thats when Katy brought me the timer.

That little timer has become vital to his survival as it faithfully heralds the need for not just the occasional Bug Juice(It is liquid gold you know?) but also for the many medications which he requires numerous doses of daily.

Just to survive

To say our little timer gets a good workout would be a vast understatement. It is rarely set for less than 20 minute intervals. Yes thats every 20 minutes just in case your having trouble wrapping your brain around that one. It's ok though because even after 14 years my brain is still trying to wrap itself around that reality.

And after staring(NO I was Fixated) for what seemed like hours at this....

I was humbled and then terrified at the same time when I realized it wasn't all there. I could not fit all of his medications in the picture.

It really does put things into perspective wouldn't you say?

So tonight as I sit here trying to write this update that little timer continues to herald the need for yet another dose of something.....

Be it medication, nourishment or even all the machines he requires for survival heralding their own set of alarms which go without mention and rightly deserve a place of recognition all their own.

Another day

It makes no matter for the need and reality still remain regardless if I can wrap my brain around it.....or not

It does take a pharmacy to keep my baby alive.........

And that to me is just plain scary


2 comments:

Anonymous said...

Proof that God exists...He placed Jophie in the hands and heart of the most special mom on earth. You are a source of strength and inspiration to me.

My prayers for you and Jophie, always.

katy said...

That timer is a miracle all by itself. How many times would we have forgotten meds and food if it wasn't for that annoying alarm going off;-0
I hope jophie gets to come home tomorrow...hospitals stink. I also remembered about Aid that I was supposed to get you something to eat before I left....I'm so forgetful.

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