#BeatingCowdens #NoMatterWhat

The week was tough.  The pain was real.  The reflux was persistent.  The fatigue, bone crushing.  There were three missed practices and a missed school day, simply because she couldn’t.  That NEVER happens.

By Thursday, when she had clocked too many hours of sleep for me to count, I started trying to pull some things together.  My “Mommy Senses” were tingling.  Things were going downhill fast.

I checked through the files.  When was that last brain MRI?  She should probably have another because the headaches won’t quit.  And, if I want to blame the hormones, which my instincts do, we have to rule out any other possibility.  But, we fired the neurologist.  UGH.  How I dread training new doctors almost as much as I despise working with rotten ones.  On the hunt…

And the GI.  She is a wonderful woman, but she is on a personal leave.  We can’t keep at this level of reflux meds.  It will start to hurt her bones.  But, I can’t imagine letting her try a day without some attempt to shield her stomach from all this crap.  I hated all the GIs.  As Pop would have said, “I’m difficult to work with.”  And, THAT was on a GOOD day,  When someone isn’t doing right by my girl, I’m IMPOSSIBLE.  Hunting again…

New doctors.  Tough to find.  Take up hunks of time while we get used to each other… and in the mean time, we wait.

But waiting seems like such a bad idea.

Saturday she dragged herself out of bed for the CYO meet at CSI.  She swam three events, beautifully.  But, before the 50 fly, her favorite, she was struggling.  She motioned to her head.  I made a mental note.  She swam like an all-star, turning in her best time again.  And then it all went quickly.

She was on the deck obviously struggling to breathe.  I grabbed her stuff, and had Felix get the car.  We switched seats at the house and I drove her to Urgi Care.  By now she was feeling better, but still weak, and tired, and full of reflux.  At least she could breathe.

Urgi Care triaged and told me to get her to the Emergency Room.  90 minutes past the swim meet her heart rate was still at 120+.

 So in went the IV.  Out came just about enough blood, but not exactly enough to cover the blood tests the pediatrician wanted.  Then the order for the abdominal CT, and the contrast dye to be swallowed.  Two hour wait in a tiny crazy room.  Heart monitor, IV fluids.  No dehydration.  No obvious signs of infection.  And a negative CT scan.

 There was a ticket to the Peds. ICU for monitoring overnight.

 Some dinner from Daddy at 10 pm.  ICU monitors everywhere.  Medical history to the resident.  I come with three typed pages of summary in tow.  Medication and history in the computer.  Heart rate coming down.  No real ideas.

The night passed and I spent more time than I should have ALONE in the PICU.  No nurse.  Nobody.  Made me wonder why we were there.

I watched the heart monitor like it was my JOB.  I took notes.  I watched the 120+ heart rate hit the mid 40s.  I watched the blood pressure dip to 92/37… I walked and watched and walked some more.

 In the morning when they showed up again, they told me a heart rate in the 40s was ok for an athlete.  Not to worry.  Then I asked how 120 could be “mildly tachycardic” if 40 was “normal.”  Can’t have it both ways.

The evening resident blew the meds.  Even with the cheat sheet.  The overnight nurse dosed her with illogical concoction of thyroid meds, despite my cheat sheet.  The day resident paid more attention.  Definitely more than the dietician who served her a tray with milk AND soy.

There was a negative chest x-ray as they grasped at straws.

The thyroid numbers were all in range.

What would you do?   I challenged the resident.  What organ do you pick to save?  What medication do you give up?  I didn’t expect any answers, but I wanted to get in her head.  Just a little.

 Time to discharge.

With a list of new doctors to find on my own.  And absolutely NO answers.  So the next time she goes to swim, or play, or do anything, I have no way of guessing if this will be our new normal.  Can’t keep a 12-year-old in a bubble.

Onward.  Focused.

#Beatingcowdens #nomatterwhat

 

The Storms of Life

As we prepared for Hurricane Sandy as best we could on Monday morning, we stopped by my grandparents house to tie up their barbecue and a few other things.  Wind precautions.

We stayed for about an hour.  We had comfortable conversation in the living room.  The same living room they have occupied my whole life, and for years before I was born.

We spoke about the storm, the trees, and being ready.

We spoke for a while about some of the storms they have seen in their lives.

I am always amazed when I stop and really think of all the changes that have taken place in the world since they were born in 1919 and 1920.  They have done such an admirable job keeping up – with everything.

They have been a  constant source of strength, support, and pillars of faith for our family in the midst of many storms.

So as the wind picked up, we kissed them and headed home.

Some time around 3:30 I started to hear of power outages.  I instinctively picked up the phone to check on them.  Pop answered with a concerned voice.  “Your grandmother fell in the basement. Your Mom and Ken are here.  The ambulance is coming.”

Suddenly Hurricane Sandy didn’t scare me as much.

These were the storms I worried about when I wrote this Sunday night…

“The greatest storms of life aren’t the ones that threaten our things, they are the ones that threaten those we love.”

Grandma‘s 90th birthday in 2010

Hours ticked by.  Shoddy cell phone service kept the updates brief.  Pop went in the ambulance.  Mom and Ken followed behind.  Head CT for the trauma to the head, confirmed no bleeding inside the brain.  Stitched and stapled, they waited for more confirmations – no broken bones.  A significant bruise on her hip earned her a bed in ICU as they are waiting to just confirm that it’s not bleeding either.  Strong vitals.  Strong woman.  That’s my Grandma.

Four generations of strong women!

I went to visit her in the hospital.  She was itching to get home.  Annoyed by all the fuss.

The hospital, which had lost power was running on generators.  The storm was wild and raging all around.

The nurses in ICU were calm and patient.  Attentive.

I listened as they recounted medical history and was impressed and almost stunned to hear Grandma at 92 has NEVER had surgery.

Guess the Cowden’s Syndrome didn’t come from her!

Trees crashed all around us.  Storm surges cost so many nearby their homes and their possessions.  It was hard to stay upset for long about the inconveniences of lost power.

Local Hurricane Damage

I spent a few hours last night with Grandma again in ICU.  We are hoping she is released to home soon, and hoping her power is on REALLY soon.  I watched my grandfather, still a pillar of strength at 93, by the bedside of his bride of almost 67 years, and I once again was awed by their ability to weather the storms of life -together.

At Pop’s 90th birthday in 2009

No need to remind me how lucky I am.  I already know.  No need to remind me that angels exist in this life – several were clearly softening Grandma’s fall Monday.  No need to remind me that the storms will pass.  I have seen the models of resilience.  I have been blessed with them for each day of my life.  I will cherish them always.

I will pray.  I will pray for grandma, and her health.  I will pray for those devastated by hurricane Sandy.  I will pray prayers of gratitude for those who weather the storm to help others.  And, I will offer prayers of thanks… lots of them.