“Lucky” Number 13

People count all sorts of things.  Among the things we count are surgeries.

Lucky13

 

Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget the others that fit in.  And we don’t even try to talk about them without the three page cheat sheet detailing the most pressing medical information.  We don’t talk to over zealous residents without the 32 gig flash drive pulling up PDFs of old blood work and reports.  (Saved her another stick today when I could produce a recent normal liver enzyme panel!)

So today, surgery number 13, was not a surprise.  It was anticipated and planned very deliberately for months on end.

The day started before 5, scheduled for a 6 AM arrival.  But, in reality it started last night.  Bags were packed to include clothes, toiletries, snacks, electronics, chargers, and our shakes too.

We got up and out quickly.  No fanfare.  No time for a “selfie” of the three of us in our “Never Give Up” T-shirts.  We checked in just past 6 and shortly after were performing all the typical surgery routines.

It is funny.  There are two groups of people in my life- those who have similar numbers of surgeries to us, and the larger group – those who have had next to no surgeries.  The first group understands surgery “routines.”  The second group raises some eyebrows.  They are horrified at our use of the camera in the hospital.  But this is our reality, and I can pack for surgery as well as I can pack a carry on for vacation.

arrow through head

We were greeted in pre-op by about a half dozen people all asking exactly the same questions (even though they and I had the cheat sheet, we still had to play the question/ answer game.)  Several consent slips were tossed at me.  The anesthesiologist and Meghan made a deal involving the timing of the IV and the mask.  Felix was given the necessary garb to walk into the OR.  I stole a few extra minutes to clarify the plan with the orthopedist.

And I must confess there was some major anxiety.  See, the plan as I saw it was for her to have the AVM embolized while the orthopedist cleaned out and searched for the elusive “leak” in the artery.  That’s why we coordinated surgery times.  Except, as it was presented to me today – the vascular guy wasn’t touching the AVM unless it was absolutely necessary.  This was a far cry from the report after the MRI in January when we were told another embolization was necessary.  But, it was now in the moment.  They had a plan and I had to play along.  The orthopedist promised me the vascular guy would be there while he poked around at the beginning in case he was necessary.  He also promised me he would do his best.  What more was there to ask, I guess.

In the waiting room I thought.  Too much.  But, when I was just about insane with my thoughts, I let them wander to Ashton and Suzannah, and the number of hours involved in EACH of those procedures, and I tried to feel better.

After about three hours we were greeted by the orthopedist.  His words were varied, but included “not as bad as I expected,” “quarterized several spots that were leaking blood,” and, “cleaned out a good deal of scar tissue and debris.”  He gave us some pictures to see his work, and left us to meet up with Meghan in recovery.

She woke up slowly, but well, and soon she was alert.  While she spoke to her dad I fielded detailed questions from several more people who held the cheat sheet. I took out my copy and obliged them with answers.  She woke in the most terrible kind of pain, curtailed by a dose of morphine and some ice.  Lots of ice.  For Meghan.  And for me- as I managed to bang my head on the table.  Insert exhaustion here.

exhausted

The pediatrician on call was relentless reviewing the three sheet medical history.  Eventually we got our room, and some time around 2 we were greeted by friendly nurses, a nice bed, and some more pain meds.

Things were settling a bit until the “Inquisition” took place in the form of that previously mentioned pediatrician.  I have to tell you she succeeded on really aggravating my last nerve.  She actually handed me her copy of the “sheet” which had been copied to just about every department so she could ask me the same questions.  By now the fatigue was starting to set in.  I resented the implications that it was somehow my fault no one was “running” my daughter’s medical care but me.  I explained carefully that I was jaded by years of dealing with sub par medical professionals.  She did not take the hint and proceeded to contact my pediatrician to tell him she disagreed with one of Meghan’s medications.  Whatever…  Truly.  Spend some time learning about Cowden’s or ANY Rare Disease.  Then we’ll talk.

'I'll give it to you straight - This disease is almost IMPOSSIBLE to pronounce.'

Arrogant self- importance.  Ugh.

We were called down to radiology at 2:30 so the feet could be X-rayed.  The orthopedist believes, acknowledges, and is searching for an answer on the foot size discrepancy.  Results tomorrow.  In the mean time his caring makes him my current favorite.

Pain medications in place.  Crutches safely in the corner.  Lights are off.  Movie is on.  And the day is just about over.

cartoon-dog-holding-crutches-4589354

Tomorrow we SHOULD be home.

For now, number 13 is in the books.

thirteen

And my happiest news of the day came when the anesthesiologist said

my girl was “stable and strong” during surgery.

The little things are HUGE!

Thankful for the prayers and the guardian angels…

Tomorrow is a new day for BEATINGCOWDENS…

Now, we rest…

6 thoughts on ““Lucky” Number 13

  1. You are my CS mom twin! All of that is so very similar to so many of our sugeries (we stopped counting at 25 – weird because counting used to be important to us, but somehow after 25, we just didn’t care anymore what the number was ). Yeah for Miss Meghan to come through with such flying colors, and yeah mom for orchestrating that excellent outcome and not crushing the head of the 8th person who asked you the crap that you so carefully had already supplied on the sheet. We know, we know, we have the same problem. You can’t fit their information on the forms you have to fill out, so I have a Medication List, I have a Katie Health History (3 pages typed), and I have a Surgery List. All are provided to just about everyone at every appointment/surgery/procedure. And still we have to recite it all so often …..

    You are such a good writer – loved it……well, hated it too for all different reasons ……but loved your writing. Let us know how your girl is doing.

  2. Lori..I can never read any of your posts without feeling such an overwhelming sense of admiration for your entire family. The things you all endure and fight and beat..and you just go on each and every day like all this is somehow normal. Truly inspiring to everyone whose lives you touch. Prayers and love to all of you..you guys got this!!
    XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s