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..