Recovery – phase 3 = HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

At the end of the day… quite literally if you go by our arrival time last night… I guess all that really matters is that your little girl went through the surgery successfully and you get to arrive home, as a family to sleep in your own bed.

That’s why I refrained from saying too much in the midst of my Mamma Bear Rage last night.

mama bear

Because sometimes you need to sleep, and think carefully before you type.

The surgery went smoothly.  The surgeon did a fine job, and so did his team.  It was not their fault we were delayed by hours.  Someone else’s baby needed their attention.  And I can respect that.  He followed up personally, listened to Meghan, was cautious but not paranoid.  His attention is to the surgical incision. The follow up care needs to be guided by endocrinology.

Meghan’s largest discomfort, aside from the sliced neck muscles, appears to come from the “durabond” glue used to hold the incision together.  Things on her skin – even band-aids annoy her.  This is making it feel extra tight (doing its job,) and is making breathing and eating uncomfortable.

But we traveled to the hospital with our gluten, dairy, soy free cooler, and she was progressing on pretzels and our ginger ale, mixed in with a little “Ever Roast Chicken Breast.”  By the early afternoon she looked better.  The surgeon said to watch her till 5.  A fair number considering she didn’t hit recovery until 7 PM the night before.  If she was still good at 5 PM he would clear her to go.

And then there was endocrinology.  Perhaps spearheaded by the fact that Meghan’s endocrinologist is on vacation for all of January and February, or maybe just a poor information sharing structure, things fell apart at endocrinology.

When the thyroid comes out there is always the risk of surgical damage to the 4 small parathyroid glands that help regulate thyroid function.  That being said, even when they aren’t damaged, they are often traumatized for a bit.  Low blood calcium is OK for a few hours, but not a few days.  Like everything else, the body needs all things working together for smooth operation.  Originally it was explained to us, that it was not uncommon for the calcium to dip after surgery then recover.  They had to just see if it tanked out.  The decisions for her post op supplementation would be made based on these blood results.

So, she had blood drawn at midnight after surgery.  Then there was the draw at 1 AM for blood sugar.  Then there was a draw at noon.  Later in the afternoon one of the doctors/residents spoke as if Meghan had received a dose of calcium (2 pills and a liquid) prior to the blood draw.  I insisted that was not the case.  Then we were told the blood had to be redrawn at 6 PM and would be read at 7PM so discharge orders could be accurate.

Well, at 6:45 when I hunted someone down for the blood draw, again I thought it odd that the  calcium – that was supposed to be there before the noon draw, showed up 30 minutes AFTER the 6:45 draw.  I waited until 8PM and started hunting down results.  I was told that the ionized calcium had dropped from 4.8 to 4.3.  I picked up my copy to show them the midnight draw was at 4.8 and the noon draw was at 4.3,  Apparently the 6PM draw held at 4.3  There were two other tests, and I wanted the numbers.

Run around.  Run around.  Run around.  Finally after much work and some heated conversations we got the numbers from the other 6:45 tests.  The calcium held their own, indicating a drop off to be unlikely.

Originally we were told she had to stay overnight for a 1 AM and 7 AM blood draw.  Then we were told that since the labs were drawn with NO supplementation. ( I brought THAT to their attention) and she still did OK, that NO blood draws were ordered for one week.  NOTHING overnight.

Now it was after 10.

The day nurse, who was grossly overworked, and contrite and apologetic had missed the order for the calcium.  At least I was able to respect that she apologized right to  my daughter for muddying up the entire process and raising her anxiety.

The resident – 1st year who left because I was asking too many questions, and declared himself “off duty,” is the miniature version of why our medical system fails us.

The passing of the buck that took place around the endocrinology department – disgusting.

And this is the clean version.

Facilities.  Doctors.  People.  Can rest on reputations previously earned.  And then one feeds into another and that reputation carries them – sometimes too far.

We have been there, and done that.  And we are far from done.  So loyalty lies in individual treatment and care by individual doctors and nurses.  There is no one perfect facility.  There is no one perfect place.  Not even in Manhattan.

We gathered our things quickly.

We were in the car at 10:45PM.

My wise daughter asked what the lesson learned.

I said,”Trust your Mom.”

My husband said, “Educate yourself.  Advocate for yourself.”

I guess we are both right.

The ride home was tough.  Painful.  You use your neck for an awful lot of things.

But we got home in time to give her a well deserved Valentine’s Day Gift

Alex and ANI hero front

Alex and ANI hero back

She certainly is our Hero.  And as we travel down the road to recovery again – a road she is exceptionally good at – I hope she remembers both lessons from the car ride last night.  Especially the one to “Trust your Mother.”  For now I can be the advocate.  She has to find some time to be the kid.

Valentine's Day 2004 - our first hospital stay.
Valentine’s Day 2004 – our first hospital stay.
Valentine's Day 10 years later...
Valentine’s Day 10 years later…

These three remain….

these three remain

She walked away today.  She broke the rules.  She updated the plan.  On surgery number 11 she hugged us goodbye, and dry eyed walked through the secure area with two young nurses.  The doors barely closed before I dissolved, an exhausted puddle, into my husband’s arms.

That didn’t last long… You only get a moment or two to pull it together.  Then there was some really rotten cafeteria food, and WAITING.

They took her in at 3.  Three and a half hours after she was scheduled.  She was tired, and hungry.  And more grown up than I am at 3 PM when I haven’t eaten.

What a whirlwind!  Last Wednesday when we met the surgeon I was stunned by how quickly he wanted the entire thyroid removed.  Stupid Cowden’s Syndrome.  Makes people quick to pull out whatever seems to be misbehaving.  And (SIGH) they are usually right.

So as the week built, and the media started predicting the newest storm coming…. I brushed it away for a while.  I thought there was no way it could stand in the way.  The surgery was scheduled.  She was ready.  The throat clearing has reached epic levels.

Faith.

faith

Faith that it was going to be fine.  Initially faith that the storm would pass.  Faith that we would arrive on time to an early surgery Thursday morning.

Then, as happens so often I was reminded that FAITH, is not about me.  It’s not about my terms, or my time, or my way.  FAITH is knowing, trusting, believing. that God will provide what we need.  Whether it fits my plan or not.

So, as it became evident that there would be no safe way to travel Thursday morning, the phone calls began.

HOPE

Rare_Disease_Day_Logo_Hope_

So much talk about HOPE this month.  Rare Disease Day, and “HOPE – It’s in our genes.”  Hope became necessary.  The faith and hope working hand in hand, with a few mini meltdowns of worry mixed in.  (HEY, I never claimed to be perfect!)

Back and forth to the surgical team, to the social worker, the secretaries.  Pleading.  Help us.  Hotel rooms that were available running several hundred dollars.  Offers from loving people to pay the bill.  But in the end money wouldn’t have stopped us.  We would have paid whatever we needed.  Because we had to be here.  Right here.  Right now.

So finally around 2 O’Clock on Weds. the call came.  “We can put you up at the Ronald McDonald House for the night.”  The fee – incredibly reasonable.  The location- perfect.  The reality – it was time to pack us up and be out of the house by 8.

Packing to take Meghan away is an adventure.  It’s not the electronics, or the “stuff” but rather the food.  Not even a major hospital can safely prepare Gluten, Dairy, Soy free food.  So there has to be a cooler.  Dad made fried chicken and plantains.  I picked up a pound of a Boar’s Head staple.  Cookies, granola, ginger ale, and other necessities.  Showers for all.  And Grandpa picked us up at 8.

We brought our own sheets – because you need to wash theirs before you go, and I doubted we’d have time.  I have to admit I was worried.  Really worried about what I would find through the doors.  But what I found was… love.

s

love-inspirational-daily

I had heard of “The Ronald McDonald House- The house that love built.”  But I never gave it any thought.

Ronald McDonald House

I have a new charity on my favorite list.

We were welcomed – almost embraced by love and kindness.  There was a nonjudgmental compassion the radiated out of every staff member.  We were given keys to our rooms, and a tour with the rules of the “house.”  We were shown to our room only after Meghan was allowed to choose a few games to play – and keep – from their back room.  And, after she was given a backpack – with a special monkey, and a monkey blanket.

And on the return trip after the tour, before we saw our room – she was handed a warm, beautiful, blue and green blanket.  Her grateful smile. My heart – full of love in this house.

Our room was on the 11th floor.  Immediately I was at ease with the wood floors, foam mattresses, and EVERYTHING wrapped in plastic.  And there was the most beautiful view.

Lobby
Lobby
Lobby
Lobby
Our Room
Our Room
View out the window
View out the window

And as we each found our way last night into our own level of sleep, there was LOVE.  Everywhere in the room.

We checked out gratefully this morning, due to arrive at the hospital for an 11:30 surgery.

View out the window on this "Beautiful Day"
View out the window on this “Beautiful Day”
Waiting for surgery with the new monkey from the bag last night!
Waiting for surgery with the new monkey from the bag last night!

By 3:00 when she finally walked through the doors we had had to spend some time reminding ourselves that we were blessed.

A beautiful chaplain met us this morning, and clearly spoke Meghan’s language.  She compared God to a loyal dog… always there – forever understanding of our needs.

The doctors took extra time with someone else’s baby this morning.  I am glad they have that level of compassion.  I am glad they take their time.

Now they need to take their time with mine.

The last status update came 15 minutes ago.  They only began around 3:40.  Prep took a while.  She is stable, but its slow going.  What to expect from a Cowden’s Syndrome thyroid filled with 16 or more nodules?  Why make it easy.

Thankfully – she has some very special guardian angels on the case today.  And the prayers of countless others.

In our family of three its appropriate to remember “These three remain; faith, hope, and love – and the greatest of these is LOVE!”

More to follow as soon as I can…

Beating Cowden’s… With a Jingle of Hope”

Friends creep into your life at the strangest times, and under the most peculiar circumstances, but sometimes the people we are happiest to know are the ones who became friends when we weren’t paying attention.

My neighbor has a heart bigger than almost anyone I know – except maybe my daughter.  She has looked out for all three (five with Allie and Lucky) in this house more times than I can count.  She loves my little girl like she is her own blood.

Today she showed up with this ornament.

ornament 2

Apparently she made them, sold them. and brought the profits over for Meghan to donate to the charity of her choice.

She fills our lives with JOY – and is definitely an angel on earth.

Random acts of kindness.  LOVE!

Why worry?

That feeling.  The one where the doors are about to close, and you have to make a decision.  Are you going to fight your way out… or give in and let them trap you?

The pile of bills and papers on my desk increases by the moment.  I am usually more on top of it than I have been these last few weeks.  When I say bills, don’t misunderstand.   We can pay our bills just fine.  The ones I am referring to are the countless ones from doctors and hospitals who have billed incorrectly, or have not billed our insurance carrier at all.  I am not the type to write the check until they have exhausted all options.  I need to get to the bottom of that pile.  Make those phone calls.  Do their job for them.

Ok so it’s not quite that bad, but its getting there!

I could say I lack the time, and to some extent that would be true.  They want to speak during business hours. I am available ideally, from about 8 PM until 2AM.  But, I think I also to some extent lack motivation.  It would be prudent to address this cycle of bills before our next round of appointments next month.  Meghan has a few critical appointments during the winter break, and a few at the beginning of December.  Not to mention the eye doctor that I still haven’t rescheduled.  And the orthodontist – UGH, have to call the dental carrier too!

I am used to this to some extent. I have never known any different.  It has been my whole life and Meghan’s too.  Only during the last year did it get a name.  But the reality is still very much the same.  Constant appointments, hoping for no new tumor growth anywhere, followed by a cycle of bills that need to be rebilled and corrected.  It always works out.  But it does get a bit old.

This month it has been especially hard to focus.  Hurricane Sandy rocked Staten Island so hard that you would have to be living under a rock to be unaffected.  We are guiltily grateful that we were safe and blessed – but it is hard to get the images out of your mind, or the reality of the people that need help.  We all do what we can. Certainly a time to “Pay it Forward” here.

Then there is my dears sweet Grandma.  Grandma fell on the day of the hurricane, and spent the week recovering from head trauma in ICU.  She is home now, improving daily.  She is walking with a walker, weary of her time in bed, and anxious to move as much as she can.  She is such a fighter.  I am so incredibly impressed by her determination, but that is nothing new.  At 92 she is blowing expectations out of the water.  She is amazing, and inspirational.

And, so is my Pop.  He loves Grandma so very much that it is almost breathtaking to watch.  I have had the privilege of spending lots of time with them these last few weeks, and I am inspired.

Ok – December 30th it will be 67 years, but the concept is perfect!

I was lucky enough to spend the night on Thursday.  After everyone was ready to sleep and I was settled in on the couch, Pop brough his chair over to Grandma and held her hand as she fell asleep.  True love at its best.

Today, a VERY kind nurse.  A stranger to us, but a friend of a dear friend came and took the stitches out of Grandma’s head.  Like an angel sent to us, she lovingly removed the sutures, and later thanked me.  She was awed by the love she witnessed between my grandparents.  She would take no money.  She just was so thrilled to help.  She was our angel on earth today, saving us a potentially dangerous trip to Urgent Care.

Grandma doesn’t have Cowden’s Syndrome.  As a matter of fact I am increasingly certain I am the first in my family to inherit the PTEN mutation that causes Cowden’s Syndrome.  That genetic defect was handed over to my daughter as well.  But Grandma doesn’t have it.  I am sure.  What she has is an intense, loving, fighting spirit, and a desire to be well.   That – I did inherit!

The piles are larger than I like.  They are everywhere, and I admit to feeling a bit stressed about the lack of control.  But, I am smart enough to be aware of the blessings around me.  To be thankful, and have a heart full of gratitude.  For it is the little things that make all the difference.

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.

Realizations…

I love my family. Especially when we get some time away from the nonsense of daily life and just get to enjoy each other.

Vacations are necessary. Big or small, they are critical food for the soul.

Our life isn’t easy, but I am extremely proud to be the mother of a graceful, articulate and well mannered young lady who is learning to take a lot in stride. She isn’t perfect. None of us are, and there will be growing pains as she defines who she is, but I am already proud to be her Mom, and I know that pride will continue to grow.

I have spent  the last 5 days amongst thousands of people and there is not one who I would willingly trade places with. I have seen kids…oh so ill and the anguish in their parent’s eyes. I have seen whiny, bratty kids, with parents who I am glad not to know.  I have seen kids who struggle, making every attempt to fit in, in a world that is overloading their senses.  I am grateful for our struggles, they have made us who we are. I do not want anyone else’s.

It is nice, and necessary to spend a few days with no doctor’s appointments.

I am glad to have a Mom to watch my dogs and give them the royal treatment for me.

I miss writing every day.  This bog has been therapeutic for me.

I can not stand the touch screen on my daughter’s IPad…and likely won’t write again until we are safely home.

These are my realizations for today.

Be well all!

 

Father’s Day

Some days it’s not about Cowden’s Syndrome, or tumors, or doctor’s appointments.  Some days life just is about life.

Father’s Day.  A day to celebrate the fathers in our lives.

My husband is the best dad in the world.  I mean it.  And he is a pretty amazing husband too.  There aren’t enough words to describe how lucky I am.

My Dad, tries his best.  He and my mom divorced when I was 5.  He has struggled with his own life through the years, but we have stayed in contact.  He does the best he can.

My stepdad, married my mom 24 years ago.  He inherited 2 bratty teenagers and has loved us as his own from the beginning.  He has put us through college, paid for 2 weddings, fixed houses, and been there through it all.

My Pop, my mom’s Dad is 92.  A WWII veteran, and a retired firefighter, he is amazing.  He and Grandma still live on the second floor of their own house.  We lived in their house for 15 years, and they became a second set of parents for us. Now they are Great Grandparents.  They pick up my daughter on half days, and love spending time with her.

Today my heart is heavy though. My stepdad’s father is suffering.  When his son married my mom 24 years ago, they had no grandchildren.  They didn’t expect to start out inheriting two teenagers, but they did.  And they handled it gracefully.  Over time Grandpa came to love us in a very special way.  He is especially attached to my daughter, who he calls “Sapphire.”  He even made sure she had a special sapphire necklace to always remember her name.  He has been brave his whole life and has fought cancer in more places than I can count.  He has been in the hospital for a month now, and this is it.  He is ready.  He has had last rites.  He has asked his boys to take care of their mom.  He has told God he is ready to go.  So we wait.

Today we remember the fathers, grandfathers, and great grandfathers that have touched our lives.  We hug some, and we miss some.  We acknowledge their impact on us.

And today in my house, we whisper constantly a prayer to God.  Today it’s not about test results or surgeries.  Today we ask that He be merciful.  Grandpa is ready to rest…