“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…

Swimming Upstream

sardines

The phrase “packed in tighter than sardines” was in my head as Meghan and I tried to navigate the overcrowded local middle school fair tonight.

It was hot.  Hotter than it should be October 9th, but exactly as hot as an overcrowded Public High School cafeteria is on your average fall day.  It was stuffy, humid, and uncomfortable.

As we traveled from table to table, remarking how much easier it would be to see over the never-ending crowds if there were some signs indicating which school was where – we just tried to get a feel for the place, and for each table.

We went interested primarily in two schools, but open to read and learn about more.  One school is small.  It works off a lottery and opens only 150 seats a year.  The other school has over 1100 students.

And as I pondered some pros and cons based on size alone, I was reminded of something a friend from work said a few months back. I may not have her exact words, but it was something to this effect,”The problem with where we live is that something becomes popular, just because a few people go there.  Then it gets more popular, and more people go, but no one ever investigates the quality.   It develops a reputation based on one feature, and people don’t look farther.”

lottery

There I was, one of those people.  I kept saying I wanted my kid in the lottery for the school, “because its small.”  I was not impressed by the people at the table.  I was not impressed by the lack of information about the school.  I was not impressed at all.  I may still go to their open house, but it will be with a very open mind.

Then there was the other school. The one with 1100 kids and the principal himself standing in front of a well constructed information board.  He answered questions, clearly, honestly and patiently.  He spoke with confidence about the school.  He invited parents in during the school day for tours.  He looked every parent in the eye and spoke as if their child was the most important thing on his mind right then.  And, even if he doesn’t remember any of them tomorrow, he proved himself to me.  It’s difficult to fake the sincerity involved with shaking someone’s hand and looking them in the eye.

And we were about an hour in to this ordeal when Meghan’s knees began to give her trouble.  Still pressing on – because that’s what she does – I knew time was of the essence.

I also knew it was time to have the conversation about “barrier free” schools.  See, in the city of New York, most schools have multiple floors.  This is fine for most kids, and for general physical fitness.  But when your 10- year -old has already endured 4 knee surgeries…

There will be discussions about the IEP, about the 1:1 health paraprofessional, about the physical therapy, and about the appropriate placement for Junior High for my girl.  Because wherever she goes, the Cowden’s Syndrome goes too.  So we need to find a place where they are BOTH welcome.

whatplan

Every which way I turned tonight I ran into old friends.  There were some I haven’t seen since preK, and others we connected with at various points along the way.  The kids are older now, almost young adults.  I can still see them running on the lawn after PM session, or on the soccer field.

All of us looking, somewhat stunned, somewhat unsure of what the right place will be for our child.

deer_headlights

As I drove past Lowe’s this weekend I saw a Christmas tree and almost got sick.  “Wishing our lives away,” I thought to myself.  Except tonight several hundred parents and children stood, on October 9, 2013 contemplating placements for September, 2014.

I find this just so ironic, considering mine is clearly not the only life that can’t plan a week in advance.

I put Meghan in a chair to rest her knees while I finished the last of my conversations with two lovely, helpful women.  And as we began the trek back to the car I had a million questions racing through my head.

Question-mark-sign

There is clearly a lot to do, and a lot to think about.

But, that will have to wait.  Tomorrow’s appointment is in Long Island, and even when they try to fast forward my life, it reminds me that we can only travel one day at a time.

 

Thinking outside the box

iep5

 

And so began the week that was.

A “simple” annual review – not so much.  But that’s OK.  Mamma Bear remained calm.  I am most strategic that way.

I am however exhausted, and facing another battle.

It was a bit of a struggle to keep the chin up this week, as I often felt like her:

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But, I didn’t act like her.  Not even once.  (Well once I cried – but I got yanked past it.) And that’s about all of that story I can share here, for now.

But these last few weeks  months, have left me with a lot of questions.

See, there is this constant battle to do what is right, or what I perceive to be right, as I advocate for Meghan, and for my family.  But inevitably, because I am so introspective – I am left with a ton of questions at every fork in the road.

questions

 

Last week when we took her to 4 doctors and an ER about her shoulder, I ended up being told I went to the wrong ER – that we didn’t belong there.  But it is a cancer center, she is already a thyroid patient there, and my child grows things.  While we are blessed that none have been cancer yet – I am not of the “wait and see mentality.”  But, still I paused and wondered if I had done something wrong.

In the end, the rheumatologist gave her a muscle relaxant.  We began rehabilitative PT and I am seeing progress.  The shoulder and neck remain wickedly sensitive – but she has back almost full range of motion.

Still we watch the lump behind her shoulder blade, in hopes it continues to decrease in size and doesn’t turn out to be the “soft tissue tumor” we were advised to look out for.

what if

Really – no one has even a bit of a clue.  And it is often just downright exhausting.

Physical Therapy this week was refreshing.  At least I deal with professionals who have made themselves aware of Meghan’s needs and focus with a goal of eliminating, or severely managing, her pain.  Thank God we found them.

Because of them, Meghan will swim in her meet tomorrow.  No freestyle – it hurts the neck.  But that was OK with her.

i love backstroke

Backstroke seems by far to be her favorite. I love watching her swim.  She seems so at peace.

It gives me a time to break from all the questions.  The wondering.  The worry.

It is easy to doubt yourself sometimes when so many things are changing at once.  Whether you are precipitating the change, or reacting to it out of necessity, when there is so much at once I think it is normal to wonder.

We are not super difficult to get along with.  Yet we go through doctors like a toddler goes through shoes.  We have very few close friends – confidants to be trusted.  Those who will be honest and open minded.  We spend a lot of time alone.  We get along really well – thank goodness.

I think what we look for is doctors, friends, associates, people who can practice:

Thinking_Outside_The_Box_by_mclelun

 

I just wish there were more.  No one really fits in a box.  And that’s not just us, and our “rare disease.”  Everyone is unique, and special.  Everyone needs to be looked at with a fresh pair of eyes.  Everyone needs to be viewed through the perspective of the other person.  Only when we start to look at things through someone else’s point of view do we solve anything.

It is the outside the box thinkers that solve IEP problems, medical problems, friendship concerns, desires to make the world better…

Daring to think outside the box is risky.  It is hard.  It is necessary.

Especially in this season of “test prep” where I have seen this scenario one too many times…

test prep

 

Mine, yours, all of them – they are individuals.  They have specific needs.  We should never be discouraged when advocating for them and their needs.

In many cases – we are their only voice.  We MUST think outside the box for them.

 

Serenade

I am sitting in the basement on the computer trying desperately to ignore the cricket serenading me from some other corner of the room.  My family has been asleep for hours.  Silently I have struck a deal with this insect, that if he stays far from me, I won’t try to squish him. 

Not a big bug fan, and since a quick google search shows me a photo of one of his distant cousins, I have strengthened my resolve not to meet the cricket tonight.  I don’t mind bugs, when they live outside where they belong.  I just don’t like them taking residence in my house!

So, he continues to sing, as I put 4 stamps on the CD of the sonograms of my abdomen from April and last Novemeber.  I included the reports and a cover letter to the oncologist.  Off they will go tomorrow, and hopefully they will safely arrive.  See I am really and truly ready to hear the definitive word that the spleen stays.  One more week…

Week – what a week it was.  I swear I am still sore from the boxes earlier in the week.  A true sign that I lost a lot of strength post operatively.  But, I am moved in.  And, after 2 hours on a Friday afternoon after the students, and most of the teachers had left – I am largely set up.  Finally!

Meghan loved her 4th grade teacher, even if it isn’t the one she originally wanted.  This one has all the skill, kindness and compassion of the other.  It will be a great year for her – academically.

Still so many medical questions unanswered.  I am so intrigued as to how a pituitary that is over working can be too small.  I am even more intrigued that this keeps only me, and apparently the cricket, up at night.

Answers.  I need answers instead of more questions.  But I fear it just isn’t to be.  So, I will head to bed before I am forced to meet the insect that has been singing my lullaby for the last 2 hours.