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.
Wednesday, January 26, 2011
Tuesday, January 25, 2011
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,
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.
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.
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.
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"..
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"..
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