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.

Last Night....

First off, in the middle of the day Jack decided he was staying with me for the weekend rather than go with his dad. then he started to put on his snow pants.  I looked in horror and said "Jack, what are you doing??"  Thats when he told me about his sledding plan.  To which I said.. "Jack what you are thinking.. you might get hurt".  Jack just had this look on his face (when your kid looks at you like you just said the stupidest thing they had ever heard).  He followed the look with "and.. your point?"

What was my point?  What more could possibly happen to him.  After all he had been through.  It was my fear, my wanting him to stay.. stay with me.. home where he was safe.  But is he?  He got pancreatitis home with me.  His got a near fatal line infection home with me.  Off he went.. when he came home I greeted him at the door as if he had been gone for a decade.. and settled him in.

Later that night, after reading an email that made me cry, I decided to have a heart to heart with Jack.  Where exactly I was going with this.. the emotionally crippled giving life advice? Off I went determined to make sure he was alright with all we had been through.

Jack was the one who saved me last night.   Jack said "ya know mom, its been three years since my last pancreatitis attack and I am out of the hospital, no more picc line and this tube in my nose is ok.  I am ok."  He went to tell me he felt lucky.  And further discussed his plans for more sledding tomorrow.

Why is it so hard for me to move on?

Jack's friend Sam

Sam and Jack met at the skatepark and became fast friends.  When Jack got hospitalized in December, he was at Morgan Stanley for almost three weeks.  Unknown to me, one week in, Jack posted on Facebook that he had been in the hospital for one week and one day and still no visitors.  Sam, new to Westchester asked his mother to bring him.  His mother is new to the US and the area, yet she put Sam in her Car, put Columbia Pres in her nav system and brought Sam to Washington Heights (Harlem)  to visit Jack.  Love that.

Last night, Jack struggling to be back to normal, begged to go Sam's house.  At nine he wanted a sleepover.  For most boys that requires a phone call.  Jack has tube in his nose and pack on his back and mother that has a hard time letting go.  But 9 pm, friend in tow, I went to Sam's filled Jack's bag and kissed him goodnight.

I just could not sleep.  And at four am, my phone rang.  I picked up on the first ring.  It was Jack and he was in tears.  I went to get him.  I guess without the pole the bag kept clogging and the alarm kept going off.  Jack, who is never in tears, said "I am never going to able to have sleep over, and I am sorry you had to pick me up at this hour."  Now I was crying, but I brushed the tears from his cheek and told him I loved him.  I also said I admired his courage and would figure this sleepover thing out.

Now I am tired and teary eyed.  He never cries.  Never ..four weeks in the hospital excruciating pain, needles, endless stays in the ER.  He never cries.. so this made me cry.

While I would prefer to have him ten feet away from me at all times.. I know now I have to learn to let go and let him find his way back to being normal.

Back to school

This morning jack wants to go back to school.  And while I so admire his courage, I am afraid.  He has a tube that runs down his nose, is taped across his check and the the tubing goes into a back pack.  The back pack contains a pump and a bag full of "food" for Jack.  His friends have embraced him.  They have come by in a pack to hang out with Jack.  But now he is off the the halls of middle school.  I know everyone will not be as kind, and for me this is heartbreaking.

I have told his sister sam to look after Jack.  The cruelest part about having a chronic illness is that along with the pain and hospitalization, there comes this....

I wish I could go with him.  Stand next to him.  Look after him.  After spend weeks in the hospital with him, it is so hard to let him go.....

Jack's Sisters..

Jack is surrounded by woman in my house. I am a single mother.  Jack has an older sister Sam.  She is fifteen going on 35.  When Sam was two my father said "tilly (that was my nic name) samantha is beautiful, smart, athletic and fearless, she is nothing like you."   Thanks dad... maybe thats why I have had boy issues.. but thats another blog.   Sam is outgoing, she has been a competitive swimmer since the age of 6, an excellent student and a very pretty girl.  She is a handful and does not cut Jack any breaks.  Jack's younger sister Kate is a lamb.  She is built like her dad, lean.  She always has her head in a book and loves the theatre.  We love the theatre, the ballet and the nutcracker.

One of the hardest things about having a child in the hospital, when you are with the child in the hospital you feel like the girls need you and when with the girls I feel like Jack needs me.

Home, I spend the first few days picking up the pieces of my family.  I know the girls are sympathetic towards Jack.  But they let me know in no uncertain terms that they do not like being left on their own.  And I do not blame them.

HOME

And trying to figure out a new normal.  Jack has a tube down his nose and a bag in a pack pack.   I was up every three hours last night.. fear i was not doing it right, fear it was clogged, fear that it was empty.  Its like having a newborn.. and I am exhausted.  Happily exhausted as he is home.

He woke up demanding a bowl of corn flakes.. um no jack.  He is allowed clears... i started my day with starbucks and a donut (before Jack woke up).  He will start to gain weight with this NG tube but to date we have lost a combined total of 15 pounds.  I am wearing belts with my skinny jeans.

We will figure this out.. for now my beautiful boy is home and yes when the snow clears he gets to go to the skate park. tomorrow school, with a backpack and a tube down his nose that leads to a backpack that carries a pack with a creamy substance that looks kind of like formula.

Tonight

Tonight at 5:45 pm, I walked out the door of Morgan Stanley Children's Hospital with my beautiful boy in tow.

Before leaving Jack talked about the boy who would take his place.   Jack said "he will be so excited after spending days in the ER to be in this room".  To his mother, I wish you good speed, I wish your baby a short stay, not too many needles and peace.  And like me,  with all my heart I hope you leave with your beautiful boy in tow ....

All my cubs are home, and I am a very fortunate girl.  Jack's story is far from over, he has a tube down his nose and we have a long road ahead of us.   I will continue this journey on this blog...

Thank you for listening and being part of Jack's story....

To all of those mothers, with babies still in the hospital, and all those mothers whose fight is over... my heart is with you tonight...

xxx

Liz

More waiting.

Jack is still at Columbia... we are waiting... waiting for the insurance company to organize the home healthcare.  Jack is coming home with NG tube.  It goes down his nose, through his stomach and into the bowel.  We are opting for this to avoid another life threatening infection.

While the NG tube does not have the same risk of infection, it is less hard to hide.  Early on concerns about how Jack would handle going to school with a tube running down his nose.  Well apparently Jack posted on his FB page last night.. "yeah .. I have this tube in my nose".  I do love that child.

I am a lucky girl, he will hopefully be home tomorrow back with me and the girls... where he belongs.

Walking out the doors of Columbia

Every time I leave Children's hospital, ever time I walk through those doors, I think about having to walk out without Jack.  And I always say.. there no way I could do that, leave without him.

Tonight I was supposed to leave and to take care of my girls.  Jack's dad called and said.. I am not leaving my apartment till you leave.  I told "I will leave but hurry because he so sad"... his dad said every time you say that I get there and he is whistling.  I think its me.  I can not leave him.  And coming home, when he is here.. there is a huge whole here.  I need him...  So to all of you mothers who have to leave without your babies.. I know how that feels.  And I am so very sorry.   xxx,

My Beautiful Boy

Jack was blessed with a great head of hair.  Its blonde and thick and has the perfect wave.  He has had it from the start.  During his stay, many resident, attendings, docs and nurses have asked me about Her.  When I correct them and say Him.  They stare and say "he is beautiful".   And he is, green eyes, freckles and a big mop of hair...

When Jack was diagnosed with CF I made a promise to myself.  I wanted Jack to be known as Jack who by the way has CF.  Not the kid with CF .. Jack.   And for the most that has been the case.   So I want to talk about Jack.  Jack is a ball of energy, he has been from the start.  Surrounded by woman, he has always been all boy.. cars, trains, anything with wheels.  Early on the house was quiet, finally I went outside and there was Jack, he had taken the keys to the car off the rack, jumped into the car and started it, his younger sister Kate was riding shot gun, and he was trying to work the pedals.  he was four.

I love his spirit and his drive and determination... I love that the first question he had about getting a tube shoved down his nose as a way to feed him.. "can I go to the Skate Park".  I love my beautiful boy.

Waiting ...

I brought Jack to the hospital a week ago today.  We were in Emergency and right away they did a blood test and found that Jack had a blood infection, so serious that his white count was way off, and his plattltes were effected.  Then we started waiting..

The truth is, Jack's infection was so bad they had him hooked up to every monitor available.  It was life threatening.  And then we started the waiting game.  Waiting for test results, waiting to decide what to do, waiting to get an IV, waiting to get medicine, waiting for a room, waiting for more tests, and again based on those results waiting to decide what to do and then waiting for them to do it.

While you are waiting for an answer that never seems to come, you are left alone with your thoughts.  For all of you who have posted on my wall, inboxed me and sent there good wishes, thoughts prayers and positive energy .. thank you!  It means everything to me.

Waiting for a bed..

I have complained to anyone who would listen about our wait in the ER.. 40 hours this last time.  The truth, I feel terrible about that.. beds become available when children get discharged.. but beds also become available when I child loses his fight..

A Brief History

When Jack was a baby he seemed to have one horrible cold after the next.  After being told that I was over reacting by Dr. Brown, I took Jack to Dr. Cindy Hartz.  She immediately sent me to Columbia with Jack.  After a day of tests, it was determined that Jack had a collapsed lung, double ear infection, one had perferated and an eye infection.  Dr.  Lynne Quittell sent us home.  She asked me to bring him back for one more test.  A Sweat test given to determine if your child has Cystic Fibrosis.  She told me not to read about it on the internet, she did not think he had it.  Being the good catholic girl I am, I listened.  So when test came back positive and I was sitting in her office and she said.. "many kids live to their 18th birthday'.  I was heartbroken...  I had no idea it was fatal.

Now in the past decade, because of a wonderful organization so much progress has been made with Cystic Fibrosis.  Jack's main struggle has been his Pancreas.  This all started when Jack was six.  Suffering from what seemed to be a horrible stomach ache and told he probably just had gas by a local doctor, we took Jack to Columbia.  He had Pancreatitis.  Usually Alcoholics get this, as the consumption of too much alcohol leads to blockage and Pancreatitis.  We are not sure what causes Jacks.

After weeks in the hospital, many IVs, we could not get a handle on it.  Dr. Chabot a friend and neighbor is head of surgery at Columbia, his collegue Dr. Stevens did a surgery on Jack.  When he came he told me that he had never seen this in a child.  Jack had lots of damage to his pancreas because he had many episodes of pancreatitis.  I got jack settled into his room, back to the girls and burst into tears..

It took weeks and a provac port to get Jack home and we started down this path trying to figure out Jack's pancreas.   Through it all Jack has shown so much courage and hope and a love for life.  I admire him more than anyone I have ever met.  I have learned from Jack that this life is a gift and to live it.

So if you take away anything from this blog, make your life count, hold your children close but let them live.

Back track....

Jack spent three weeks in December at Columbia.. this is when he suffered his fifth attack of pancreatitis.  It had been three years, and in the beginning we were hopeful it would resolve itself with a few days rest.  That is not what happened, on the day he thought he was going home, his blood results came back, his numbers were up he would have to stay and have surgery and a picc line.  The picc line I tried so desperately to avoid because it gets infected. And if it does, it is life threatening.. and that is exactly what happened.

With Jack home days before Christmas, picc line in, Kate and I went to see Rain on Broadway.  When they played let it be.. i thought about Jack and all we had been through.. Jack .. "there will be an answer"..

And finally tonight.. to my honey bunny Jack...

Guess how much I love you?  I love you to the moon and back.  Stay Jack.  Stay with me.

A Heartfelt Thank You....

It takes a Village to raise a child.  And in Jack's case nothing could be more true.  I truly appreciate and cherish all the love and support I have received.  From posts and inbox messages, calls and offers from everything from an apartment in the city if I needed a rest or a shower, to help with my girls.

What I have learned is that I am blessed with three beautiful children and kind and generous friends.  Thank you,  all of you and know how much I appreciate your love and support...

Liz.

This is the infection Jack had...

http://emedicine.medscape.com/article/228816-overview

He seems to be reacting positively to the antibiotics thank fully.  We have decided not to with another Picc but have inserted a NG tube that goes through his nose.  Right now Jack is very uncomfortable and threatening to pull it out.....

Tomorrow can only be a better day....

home with my girls

But my heart is with Jack.  He has his NG tube.. but he hates it.  He tried to pull it out. He has called me no fewer than 20 times.  If I go to the hospital and I see him in tears I will pull it out for him.  His father is with him and trying to encourage him to give it time.

I keep waiting for a break, for a sign, for something....

I love you Jack.. with all my heart.. just stay with me..

Life in a Babies Hospital

Most do not know what it is like, and with all my heart I hope they never do.  Its a lot of sitting around and waiting.. waiting to find out if your child is going to live or die, waiting for tests, waiting for test results, waiting for doctors to make round for the two minutes they are going to tell you where you are.

Its hard to leave your child because often they need, they need you to find the doc because their line has blown, they need you because they are getting sick, they need help getting to the bathroom, they need to know they are not alone.

When finally they fall asleep you are left with just you and your fears. Some eat, some drink,  I am choosing to keep this journal.

Sunday Morning At Columbia

After staying up until midnight waiting for them to bring Jack for his MRI, we finally fell asleep only to woken up at 7 am Sunday morning.  We were on our way to Milstein finally for Jack's MRI.  Jack has a hard time with IVs.  Getting the one currently in place, took many attempts and from the start it burned.  The MRI required Jack to lay still in the machine for half an hour, while contrast was injected through his IV.  The contrast caused an intense burning sensation, I watched as tears ran down his face, but he held still and got through it.  The MRI guy loved Jack and said he was better than most his adults.

Once back in the room it was obvious his IV was blown.  His hand was swelled to twice its size and he needed another IV.  Charlene from the IV team came and Jack held out his other arm for yet another IV.  Later in the day a resdent came to insert a NG tube through Jack's nose that would go into his bowl.  I asked repeatedly how often she had done it.  She did not want to answer.  She got the tube in but was unable to take the "guide out"  making it extremely painful for jack.  Tears streaming down his face, and begging them to take it out .. finally they did.  The resident finally copped to never having done it before.

So now we are waiting for someone with experience to try.  Nothing ever comes easy for Jack.  But he held his own and watched "man against the wild" on his iPad.  We laughed about how his sister sam would fair "out in the wild".  We both agreed she was too much of a diva to do it.  However, Kate my youngest, said "if a film crew was following her she might give it a try".    We all laughed...

Today jack is on day five of IV antibiotics to clear up this life threatening infection.  He needs seven in total.  And we are waiting for the results of the MRI and another attempt at the NG Tube.

Some say Jack is lucky to have me.  Its the other way around, Jack has shown me courage and a passion for life that I have never seen in anyone before.   xxx Jack.

January 2011

The past post is from today.  I am spanking new and do not know how to change the date.  This morning Jack is going to get a tube that will be inserted down his nose, through his stomach to his colin.  This will allow us to give him the nutrients he so desperately needs.  Prior to this Jack had a picc line.  Every night I would prepare a bag and feed him through that line.  However, Jack developed  life threatening infection and the picc line had to be removed.

This was after a 48 hour stay at Columbia's ER.  Because of the lack of available health care to the uninsured and the poor, these families have no choice but to go to their local ER.  Columbia Pres. is one of the top Hospitals in the country.  However it is located in Washington heights.  During our 48 hour stay, jack slept mostly.  I sat in chair with the following companions..  a 15 year old girl, clearly a gang member, holding her hand with huge puncture wounds.  She had been bitten.  No not by a dog, by another 15 year old girl.  There were three of four teens who had overdosed.  Two 17 year old boys, clearly felons, under 24 hour police watch and numerous screaming babies with pnemonia.  Ten different doctors came in to talk to me about Jacks infection, they had ten different recommendations on how best to treat.  John, my nurse who has seen me through many of Jack's struggles once told me  when I complained that no one seemed to have an answer to Jack. "Liz thats why they call it practicing medicine."