Thursday, January 28, 2010

2010


I am a single mother of three living in Rye New York

This is my story.

Samantha, 15 going on 25.. nickname HRH. Jack, skateboarder, and Kate always has her head buried in a book. Jack and Kate have Cystic Fibrosis a terminal disease.

Jack is no stranger to hospitals. At six Jack we learned Jack, in addition to his CF, had Chronic Pancreatitis. He spent 9 weeks in the hospital.  He went through numerous invasive tests to try and determine the cause of his Pancreatitis,  and finally a Provac port. While this port enabled us to bring him home. 

Since then Jack has been hospitalized seven times. This blog will start with the most recent. In early december Jack started to show signs of another pancreatic attach. After being up all night, and a 15 hour stint in Columbia's ER, Jack was diagnosed with another episode of Pancreatits. He spent two weeks in the hospital trying to get it under control. Finally with no sign of the attach ending we put a Picc Line in. A picc line goes from his arm, through a main vein to his heart. It by passes his digestive system, so the pancreas can rest and heal. The drawback it is highly suspetable to infection.

After two weeks home developed a fever and cold. I at first thought, hoped he had the flew. Two days later and 48 hours in Columbia's ER Jack was battling a life threatening Picc Line infection. I have never seen Jack so very sick. He is currently at Columbia on high doses of IV antibiotics. We are going to attempt a NG tube rather than another picc line (the last one has been removed due to his infection). Through this all Jack amazes me. He is strong and thoughtful and accepting of everything coming his was. 48 hours into our stay at Columbias ER (No beds available), Jack turned to me and apologized to me. I asked why he was apologizing.. he said I am sorry you have to sleep in a chair. I had been strong up until then.. but at that point I burst into tears. I love child with all my heart, and will do anything and everything for him. That he felt responsible.

This blog is not for everyone so stop reading if you do not want to hear how I truly feel. I often wonder how I will ever be able to leave that hospital without Jack. I do not think I can walk out the doors without my son.


BOOKNOTE: This is the first I have read this post in two years.  Its hard for me to read this.  It brings me straight back to those long nights first in the ER,then in the  towers of Columbia Presbyterian Babies Hospital. Let me explain, at Columbia the only way to get admitted is through the ER. The ER is in Washington Heights in NYC.  Legally anyone who shows up gets treated. The result, it is a mad house.  So when Jack gets sick, we know we are going to spend a time in the ER. My shortest stay was 1 day, my longest was 4.  The ER is hell.  There is no privacy, very little care provided and no place to go. You sit in a chair, next to your child's bed and wait. Wait for those beautiful "Mrs. Clark we have a bed for Jack in the towers."

Then its off you go the towers.  Its really hard to explain what life is like for a chronically ill child and his family.  When I am with Jack I feel guilty for not being with the Girls.  When Im the girls I feel guilty for not being with Jack.

The hardest part for me, in going back to read this blog that I wrote is that through out it all I can feel my fear.  My fear that like other mothers before me I would have to walk out those doors without him.

I am happy have this.  It's a record of our story and there are so many others like us.  Its a mothers natural instinct to protect her child at all costs.  To have no control over their this.  To be faced with the fact you will lose this battle, its just a question of time is overwhelming.

I try to be like Jack and live everyday to its fullest, especially the days we are NOT at Columbia.  But its not always easy.

Thank you for reading our story.