Not Another Trip to the ER at Columbia!

I am beginning to feel like I am a frequent flyer.  Quite honestly, I would rather have that status anywhere but here.

Jack has an NG tube.  I feed him through it.  Which means mixing powder like baby formula.  I am very unfamiliar to this as I breast fed all three of my children exclusively.  Monday night the tube became clogged.  The clouds rolled in.  Emotionally and physically exhausted, I thought I will not make it through another trip to the ER.  I called Jack's dad.  He said he was traveling.  He is always conveniently out of town.  Two weeks ago, the time I spent five days straight at Columbia, his dad was unable to come because he had to take the key to our house in Vermont to the realtor.  I later found out he took his new girlfriend on a ski vacation.  In December he was on the west coast with his new girlfriend.

So yesterday morning I packed Jack and went back to the ER.  Determined to get out in record time I bullied my way through.  Business as usual the ER was filled with kids from the area whose parents refused to get a primary doctor with fevers of 98.  Hardly something that should bring you to one of the top teaching hospitals in the country's ER.

This trip had a happy ending.  They decided to pull Jack's NG tube and let him try a low fat diet.  Jack and I were giddy on the car ride home.  Jack no longer has a tube running down to his nose.  He does not need to be fed every three hours through the night.  I actually got to have a night out.

He put on his back pack and for the first time in a month headed out the door to school  As I write this I find myself wondering how his day is going, sitting next to the phone waiting for a call.  So far so good...

My baby boy is out of the hospital, without a pic line or an NG tube.  All is right with the world, for now.

I CHOSE JACK

Two weeks ago, I left the house and told my girls I would be back in two hours.  I was just taking Jack to Columbia, he had a fever and we needed to culture his line.  The girls did not see me for four days, when I stopped in for a change of clothes.  Note to self, parenting is not that hard, just show up.   I chose Jack.  I know most would say I had no choice.  But I did.  I chose Jack. Others will say I made the right choice.  Did I?  Only time will tell.

Sam, my first, and I have been together for fifteen years.  From the start she let me know who was in charge.  I purchased this gorgeous stroller and waited for her arrival.  She came alright, all 8 lbs and 22 inches, but when I put her in the stroller she screamed.  She was in the baby bjorn from that day on.  She started swimming at six.  Seven years later, I have bags of ribbons, many miles on my car and she has trophies, articles and a thirty year old record that she broke.   Recently Sam has been rethinking swimming. This last month, the month when I chose Jack, Sam needed me.  She acted out the Saturday night I was gone and her father said she was taking advantage of Jack being sick.  I knew better.  She needed me, I was not there, I let her down.

Today Sam embarked on her latest thing.... I found this wonderful talented photographer, Catherine White. She agreed to shoot Sam.  The pictures she took brought me to tears.  Here are just a couple

shhh do not tell jacks docs.

The Good, The Bad and the Ugly

Our trip to Morgan Stanley's Babies Hospital


Jack and his dad.. Who is the patient?

The Good


Jack's results.  His platelets back to normal, cbc normal, and enzymes normal.  The life threatening infection that was racing through his blood,  suppressing his white count causing him to be septic was gone.  


The enzymes being normal, his pancreas is settling down.  He still has his tube in his nose and we are still waiting and resting his pancreas.  Either we are seeing the light at the end of the tunnel or its the lights on the train coming in the other direction, never sure.


The bad.  


I called Jack's home health care supplier today, I am out of the formula I put in the bag attached to the tube that goes down his nose and feeds my son.  It seems that our insurance will cover the tubing and empty bags but not the food that goes in it.  Excuse me?  WTF.  Car insurance is so much more effective than medical.  We pay our medical insurance religiously.  When it comes time to pay, no they seem to have a hard time letting go.  You know to pay for life saving surgery, medicine, tests, all the things that will give my child a fighting chance against this disease.  Honestly, jail.  


The Ugly


Insurance executive who refuse to pay out for surgery, supplies, tests etc.  Either jail or a two week stay at Columbia Pres. I read an article today that if you are treated at a hospital that is more aggressive in their care you have a far better chance of surviving.  The only reason hospitals are not aggressive, they do not want to risk not being paid by the insurance company.  That is heartbreaking..


I left Morgan Stanley's Babies Hospital today, Jack in tow,  and took a picture.. the doors.

Jack waiting to go home...

Sam

To my beautiful daughter,

I am so sorry that I have let you down, that I have left you on your own and during the past two months when you have needed me the most.  I have not been here.  But know how much I love you and how very proud of you I am.  As a baby I never put you down.  You soared at an early age.  You were beautiful, bright and fearless.  Yes, you are an excellent student, beautiful and a wonderful friend.

Of course I want you to continue to swim.  Since six we have traveled the east coast to your meets, we have gotten lost too many times to count, stayed in beautiful hotels, stayed in hotels where we feared for our lives walking out the door.  I have admired the hard work and commitment along with you talent that brought us to huge meets in NC, Boston, FL and LI...  Every time you swim, I am so proud of you.

Know I love you with all of my heart Sam and I am home.. and all yours.. NC in April?

Your mother...

Its a long road home...

While in his heart Jack is so excited to get back to his life, his friends, his school.  So far he has been unable to muster up the courage to walk through the doors of Rye Middle School with a tube down his nose, taped to his face and his back.  I walked through those halls today.  Is every preteen in this school tall and stunning.  Middle school was really hard for me and I was just short with bad hair.

Today I met with his guidance counselor and nurse.  First of I have never talked about the community we live in and the School he attends.  It brings me to tears.  To all of you how have reached out to me and my family.. thank you and we would not be doing this well without you.  To the Middle School staff, thank you for all of your help and guidance with Jack.

To my beautiful boy, I am going to bring you to school and you are going to walk through those doors and your friends will walk with you...

sleep tight my beautiful boy.

Jacks...

Jack's sister Kate followed her brother Jack by 13 months.  She too was diagnosed with CF.  Sam turned 3 a month after Kate arrived.  Fortunately Sam was big and mature for her age so I put her to work immediately.  She was in charge of grabbing blankets, passys and books.  Often while  I was preoccupied with the babies, Sam would march over to Marsha's house.  Usually dressed in only a diaper.  Marsha, from the midwest had one daughter who had a better clothes than me.  So Sam a the door in only her diaper.. well..   I had other things to worry about.

Two children with CF can be a rough in that children with CF get each other sick.  But the bond they shared from the start has proved pricelss.  I often dressed them in matching outfits from Best and Co.  They ate at the same time, slept at the same time, played at the same time and took a bath at the same time.  Note To Self: one of my all time favorite Jack stories... once, after Jack and Kate had been bathing together for years.. they popped out of the tub and ran around naked.  Jack stopped in his tracks.. looked at kate and asked "Kate where is your Penis?"  Kate, the younger of the two looked at him like he was a complete idiot and walked away....

That bond has served them well.  When Jack goes to the hospital, so does Kate.  She plays games with him, or quietly reads if he is sleeping, we have watched all the Pirates of the C movies, the Bourne movies and endless episodes of the Simpsons.

This past stay at Morgan Stanley we took up the game of Life.  Kate continued to play even after Jack when forced to get a wife made her ride in the trunk of the car.  Sued her ten times for 10,000 each time. And with millions in cash, purchased a double wide for his wife, saying he only did it because he was forced to buy a home,  otherwise he would have left her in the trunk.  Needless to say he won every game.  Which says a lot about our culture...

Kate is Jack's companion...