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Learning that even when you’re prepared, you’re not.

We have spent untold numbers of days in hospitals over the years.  I have lists for going to the hospital, let alone just walking out the door.  Do you have her meds? Do you have extra clothing? Do you have everything but the kitchen sink -which would be handy sometimes?

And yet, it’s the waiting that gets to you.  The unknown outcome.  Will we have to stay due to some complication that no one could predict? Will she “crash”?  Waiting during surgery takes so much energy that sitting for 6 hours or more is exhausting-both physically and emotionally.  You would think I’d have a great excuse for resting, meditating, just taking a break.  But the pent up worry is an energy vampire.  You tell yourself not to worry, but you’ve been through this too many times not to go there.  Deep breathes, you catch up on the latest Hollywood gossip to find you really don’t care.  That’s for trips away, when you can get away (ha!) and come down from this crazy, ever-diligent world you live in.

I don’t sit well.  I’m used to a day so over-packed with things that need to be done that the house gets dusty, the laundry piles grow, and by the end of the day (if I have an end of the day) I’m not sure what I’ve accomplished. Ok I do know- she’s alive and relatively healthy and happy. When you live with and care for a medically fragile child,  there are times that even if it was possible to have 24/7 help, you can’t get it all done.  We, living in Illinois, have been told we  don’t have the level of care that we could get 24/7 help, let alone find the people for even a fraction of that time.  Sophie’s needs are so unique that there isn’t a box to check for that, so no box, no “credit” for requiring help.  We are thankful for the help we do get.  Don’t get me wrong.  Some of our helpers are so amazing they should be wearing capes. And they love my daughter, almost as much as we do.  Ok, some days (that should read nights)  maybe even more.

So I sit.  I fidget.  I pull out my computer that I brought along with the truckload of other things to keep a special needs teen occupied while they prepare her for surgery.  I try to start a blog note, check emails, look at Face Book.  “Minor surgery.”  She’s mostly healthy except for these teeth that need cleaning and x-rays and caps done and probable teeth extractions that they won’t know until they have her under general anesthesia.  “Day surgery”, except if she crashes then she’ll need to be admitted.  We’ve spent 4 hours in the pre-surgery area so she can get platelets and plasma because her numbers are so low everyone is worried her blood will not coagulate and clots won’t form in those gaps.  3 hours since they have taken her away.  Her oral surgeon comes out and we are told that she needs 3 extractions.  BUT.

HERE IT COMES.

Her platelets wouldn’t come up.  She’ll be under too long to get more blood products and wait her out to see if it’s enough.  She’s done, for now.  Now comes the regrouping, the re-thinking, the planning with doctors on next steps.  How long can we wait? Who needs to be involved? All the pre-planning , coordinating of people and things…failure to launch.  I take a breath.  Wait with Sophie in post-op for her to awaken and be sure she’s ok to take home.  We’re the last to leave, the intermediate care hospital floor is advised we are going home. HOME.

And in a few days we’ll start again.

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