Thursday, August 16, 2018

This post is from 2010... This is the beginning...

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 genetic terminal disease.

Jack is no stranger to hospitals. At six 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 get it under control.  He was on TPN.  He could not eat or drink.  Every line they started, failed, he was losing weight, he was in pain and no one seemed to have an answer.  He finally had Dr. Stevens from the Adult side of Columbia do an ERCP.  There was nothing he could do for Jack.  They made the decision to put in a Provac Port and send him home. While this port enabled us to bring him home, if it caused an infection because it was not properly prepared, the infection could be fatal.  I was assured we would have round the clock nursing.  So we left the hospital one day before Christmas.  Round the clock nursing was not available, it would be me, with no medical training whatsoever, that would take care of jack and this port for the next six months.  Tears rolled down my face as John, my favorite nurse in the universe, came to my house to show me how to take care of Jack.  I was terrified.

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. Only in the US can you leave the hospital with a Picc line.  Whey?  If they cause an infection, the infection can be fatal.

Jack developed a fever two weeks after the picc line was put in.   I at first thought, hoped, he had the flu. Two days later and 48 hours into our stay at  Columbia's ER Jack was battling a life threateng infection. He had sepsis.  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 this child with all my heart, and will do anything and everything for him.

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, 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 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.

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