Saturday, February 7, 2015

Day 7 - Rachel Hope McCary

Her Own Kind of “Normal”…

( To start from the beginning of Rachel's story 2013 & 2014 )

The Bible says, “Laughter is good medicine”.  In fact, it’s the very kind of medicine we need these days!  After almost three years of waiting on the transplant list for Rachel’s new heart, our entire family could use a little happy remedy now and then. 

Actually- laughter is not a drug we’re short on in our house!  We love to laugh and are sometimes accused of doing so at the most inappropriate times!  But I hope you’ll allow me to share some of the hilarious happenings of yesterday without thinking us to be the most “abnormal” family you've met in the heart community.  We are, after all, our own kind of “normal” and we like it that way!

It would be fair to say that the circumstances that might alarm the most normal of “normal” people just don’t phase us anymore!  It seems Rachel missed the memo that her heart is really, really sick, and she just simply refuses to stop living!  She goes to school.  She patrols the school bus aisle and keeps everyone in line.  She takes ballet classes and dances more than she walks a straight line.  She plays foursquare and football and every other kind of ball, but her favorite, by far, is basketball!!! 

Rachel came to us last year and asked if she could play with the basketball league in town.  We started to break the news to her she had obviously missed!  Little girls in end stage heart failure don’t play basketball!  We decided to keep it to ourselves…  Of course she could play basketball!  (grimace)  Oxygen would be available for her parents in the stands and we would need it!!!! 

Occasionally (well… maybe a little more than that!) I worry about the beating her heart is taking with all this living! (Pun completely intended!) I often resist the urge to follow her around with an oxymeter.  Often I do NOT resist, and I will force her to pause long enough to check her oxygen levels in between baskets.  Her lips are blue… very blue… but that’s ‘her own kind of normal’ and I’m used to that!  Even digesting supper makes her lips blue!  I don’t even see blue anymore… I only see Rachel! 

Rachel has come to accept a very abnormal mother that runs after her and makes her pause for oxygen readings when ‘her own kind of normal’ seems to be getting out of hand.   But even a reading of 51% doesn't stop Rachel from asking if she can return to the fun now!?!?

I decided that maybe I should report these abnormally low findings to her cardiologist.  “What should I do???”  I texted him and asked.  I hoped he might give me some answers to relieve my stress levels or prescribe a new drug to prop up her oxygen saturations during ‘her own kind of normal’ activities…  His suggestion???  “Stop checking her SATS!!!”  It appears her doctor has thrown in the towel on expecting anything less than “normal” from Rachel and has just decided to let her live!  In this case, he says that ignorance is bliss, and I've decided to join him in that for now!

 Since my writing last February, Rachel has gone through some really rough patches.  Last spring we really thought we would lose her if a heart was not found quickly.  A PICC line and the supposed miracle drug, Milrinone, were tried, but did not help the way we hoped it would.  Several infections later, we pulled the PICC line and allowed Rachel to return to living ‘her own kind of normal’ again.  She was thrilled and hasn’t stopped since!  We were supplied with an AED at home (just in case!) and Hospice began spending time with us on a regular basis.  While others gasp at our new kind of normal, we are growing more and more OK with it!  Talk of heaven is sweet around our table and Rachel is not afraid.  She has made her wishes well known to all of us!  She will wait for a new heart, but she will not wait to live.  This is plain to everyone she meets! 

There is one thing she is not willing to do- and that, too, she has made plain.  She does not want to live OR die inside the four walls of a hospital!  Period.  As her parents and the people that love her in the medical community and around our home and school, we have agreed to honor those wishes.  While it may seem crazy to allow a 10 year old to dictate such life or death decisions, we understand that they flow from the heart of a little girl trapped inside the walls of an orphanage for the first 7 years of her life!  She is just discovering what it means to be “normal”… at least ‘her own kind of normal’ and she is thriving in it!!!  There is simply no way any of us will stand in between Rachel and the “normal” life she has come to love!  We will do everything we can to allow her to really live until her dying breath!

This means that the doctor that loves her so much was forced (through Rachel’s insistence) to sign a DNR to have available for paramedics, should they be called to come to help here at home- at church- dance class- or at school.  She was not to be transported to the hospital for life-saving measures if her heart stopped beating while she lived the life she only dreamed about before her adoption 3 years ago.  Done.  This is Rachel’s “normal” and she loves it!

But yesterday afternoon my “normal” was interrupted by a phone call from the school principal.  Rachel was not well.  Her lips were blue.  Her oxygen levels were low. (Yup!  Sounds like Rachel!) Paramedics had been called to transport her to the hospital.  (Wait!  What?)  I needed to come!  What in the world had happened?  How did ‘Rachel’s own kind of normal’ become so abnormal???

I tried to beat the paramedics to the school to make sure things were handled according to our very thoroughly laid out plans in any event such as this one.  But obviously things had gone terribly awry if paramedics had been summoned to take a still conscious Rachel to the hospital!

Unfortunately- the fire truck and ambulance, with blaring, blinking, obnoxious red lights, were already at the front entrance to the school when I arrived!  The 5th grade classroom windows (including Ellie’s) that faced the parking lot were lined with faces pressed to the glass to see what the commotion was about!   Oh my…. 

I ran to the nurses office where 5 paramedics and 3 school nurses hovered over Rachel.  One of the nurses even had mud-covered knees from falling while trying to get from the other side of the campus for this “apparent” emergency of blue lips and low oxygen rates. 

“Thank goodness!  Mom is here!”, they announced as I ran in.   

I was instantly relieved to see Rachel sitting there in ‘her own kind of normal’ way, begging me to remove the massive oxygen mask they had placed over her mouth and nose.  She looked stunned by the attention she had drawn when her teacher brought her to the office with a very “normal” headache intended to tell Rachel to take a break.  Now they were getting her ready to go to the hospital, and away from the normal life we had promised!  I could tell by the look on her face that wanted me to fix this situation before it got any worse!  This was the last kind of tender, loving care she wanted!

My eyes darted to her heart rate and oxygen levels being monitored on the machines from the ambulance, expecting numbers to explain this unwanted intervention.  An oxygen saturation of 82 was amazing for Rachel!!!! No wonder her eyes were begging from behind that mask for me to rescue her from the oxygen she didn't need!  I gave her permission to remove the mask, in spite of the nurse’s insistence that she “needed it”!!!!  Maybe Rachel could tell me exactly what had happened to warrant flashing lights and the life-saving equipment surrounding her! 

“Do you feel sick?  Any vomiting?  Diarrhea?  Feel faint?  Heart feel funny????”  I think I covered everything…

“No…No…No,” she shook her head.  “I just had a headache and my teacher brought me here.”

I must have looked terribly confused, because the school’s substitute nurse leaned over to introduce herself…  The look on her face said that she obviously thought I was crazy!  This child clearly needed medical treatment and any good mother would see that.  She had blue lips and oxygen levels far below normal.  Any normal human being could see that her condition warranted an ambulance ride to the ER.   She had not yet heard that neither Rachel, nor the family that loved her, were “normal” or anything close to it!!!

I tried to explain in as few words as possible that for Rachel, blue was “in” and that any oxygen level over 50% meant that she was ready to pick up a basketball and go!  It was obvious that everyone in the room found what I was saying too abnormal to believe.  Didn't I want the ambulance to at least take Rachel to the hospital to get a “professional” opinion on her well-being? 

Rachel knew I was trying, but she was also clearly unhappy that things had not gone as planned.  She was ready to go back to class or just get in the car and go home!!!!  She wasn't about to lay on a gurney and head for the hospital!  These strangers had obviously never watched Rachel play basketball!!!!  Blue lips and an O2 SAT of 63% happen to be Rachel’s own kind of normal, and she was ready to get back to it!!!!  

I agreed to sign a “Denied Treatment” statement and I swooped Rachel up and headed home.  Rachel instantly felt better and reminded me that today was Wednesday. That meant there was ballet class and church later on.  She wanted to go!  Doug advised me against taking her to dance.  How could I deny 9-1-1 treatment one minute and take her to dance the next?  That would NOT be normal!!!  I caved and kept her home from dance, but she insisted that she go with her sisters to Wednesday night church.  I agreed.  Why should I force her to act “normal” when she is perfectly fine with ‘her own kind of normal’? 

I picked her up from her class that night and she sprang out of the room with bright blue lips!  She’d had a blast!  It was great to see her back to “normal” again!  I grabbed her hand and we skipped toward the car. 

“Your lips are really blue, Rachel!” I teased her… 

 “I know, Mom!” she chirped back, as she smiled from ear to ear, “Maybe you should call 9-1-1!” 

The medicine of laughter spilled over!  No way, no how!  I wouldn't dare stand between that precious girl and living!!!  Who decides what “normal” is anyway?  Rachel is living ‘her own kind of normal’ and she’s loving every minute of it!    


Andrea O. said...

Oh my friend, such a beautiful testament to Rachel's indominable spirit!

Denise said...

She is so precious. I pray for her every night.

Jan J. said...

What an amazing young lady you have there!

LisaE. said...

Miss Rachel you are amazing and inspiring. Your love of life is contagious. It makes people want to do more. Prayers for you sweet girl as you wait!!! You have touched so many lives.

Sarah said...

Couldn't have said it any better!

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