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...

Naive

Before having a sick child, I naively believed if there was a disease, there were teams of doctors working tirelessly to cure it.  I did not think about funding, but why would the government not pay for cures.  I could not have been more wrong.  The truth is its you and me and my friends and friends of friends that are left with the responsibility of finding a cure.

If your child is fortunate enough to have a disease which many others have, chances are there is a lot of funding for it and a lot of progress being made.  While CF does not effect a large amount of children, the organization and there is one, is very well run.   The overhead, 95% of the money they raise goes towards the disease, I have seen their offices and would have put it at 98%.. this is an good thing.

Others are not so fortunate as we are.  Their children have diseases that are rare.  Rare means, not many people raising money. No money no cure.  What makes it even more unfair is that the government makes the process for finding a cure very very expensive.  A great deal of money at the CF foundation is put toward getting medicine approved, through a very difficult and expensive government buearacracy.

First thank, thank you to all of you who donate.  If you have friend with a child with illness, make donation to that particular disease.  Attend fundraisers for childrens diseases and hospitals, they raise money you have fun and bid on trip or a spa day and go, everyone is happy.

I do not even want to talk about insurance companies, except to say our children get healthy or stay healty in spite of insurance companies.  Shouldn't it be the other way around?

So thank to all of my friends and friends of friends, who have walked in the rain, danced in a club, listened to endless speeches,  met the mets in order that we can find a cure for CF... your efforts working they are getting closer to a cure and have given children with CF a chance at a longer more productive life..

Thank you one and all....

Cystic Fibrosis

When Jack was first diagnosed with Cystic Fibrosis I called his lung doctor daily with questions and cures I had found on the net.  Silly to think she had just overlooked them.  Finally, Dr. Quittell said "Liz go home and live your life, I will call when there is a cure."   So thats what I did, I went home and took care of my babies.  I had three in three years.  Sam, my first was big and beautiful and bright, 20 months later she had a brother.. I still think there are days she has not forgiven as she truly enjoyed her Only Child status.

Jack came into the house like a lightening rod.  He was a ball of energy from the start, and his sister Kate followed thirteen months after.  I went home to take care of my babies and wait for that call.

In the years that followed I have been pretty good at doing just that.. when Jack gets sick, my world stops and I get scared.  When he was a baby, I would just hold him and rock a him and whisper in his ear "do not leave, stay with mommy Jack.. do not leave me."  I still kiss him goodnight, when he is sick and say Jack stay with me.

I am here, taking care of my babies and waiting for that call.

No Dinner for Jack

The only cure for Pancreatitis is no food and no drinking.  During an attack the Pancreas becomes inflamed and attacks itself.  The only solution.. bed rest.   Jack's last meal was December 1st.

He is allowed clears.. its the nursing home diet, applesauce, chicken broth, apple juice.  And slowly you introduce more food back in. So tonight, I am cooking for Jack.  I am making chicken noodle soup from scratch.  Sadly I will have to strain the past part out before giving it to him.. but it feels so good to be able to cook for him.