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.
Thursday, January 27, 2011
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.
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.
Wednesday, January 26, 2011
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
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.
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.
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.
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