Just saw this thread and I'll have your brother in my prayers still. Outstanding to hear he will recover, the strength of how the body can recovery from severe illness still amazes me.
Peace
*We CAN bomb the World to pieces, but we CAN'T bomb it into PEACE*...Michael Franti
*MUSIC IS the expression of EMOTION.....and that POLITICS IS merely the DECOY of PERCEPTION*
.....song_Music & Politics....Michael Franti
*The scientists of today think deeply instead of clearly. One must be sane to think clearly, but one can think deeply and be quite INSANE*....Nikola Tesla(a man who shaped our world of electricity with his futuristic inventions)
Now that I am back in Chicago and on my lap top, I can write a little better of an update.
First off I want to say a HUGE thank you to everyone here who has wished my brother well. I truly believe the love and support he and my family receives plays a large part in recovery.
Here is the Thursday 11/15 update: Today Scott was scoped to see if they could remove his tubes, but they weren't ready yet. They are going to look again tomorrow because they are really trying to get him off. But on a happy note, his skin is GREAT! all of the blisters have been replaced by new bright pink skin. He is itchy, but the doctors say there will be no scarring long term. This is excellent news. He's only a jr in high school, and I'd hate for him to have to battle being scarred or something over taking antibiotics. He is coughing up a lot of stuff now and clearing out his chest. He was trying to communicate with my mom today but he was so confused and out of it that they didn't get anywhere, and obviously he can't talk still because of the tube. Once they get the tubes out, they hope to have him start PT and Speech therapy so he can get back on track. Since steven johnsons makes you shed all of the linings inside as well, his mouth is very bad off still, and might have problems talking for a while let. But he is going to make a full recovery, and hopefully will be back to school in 2008. He will most likely miss thanksgiving this year, but he should be good by Christmas.
Again you people have been amazing. I will keep you updated as to when he finally gets his tubes out, and when he gets to go home.. but it will be a while.
And if you think about it, I'm sure he'll play a pretty HUGE part in the REAL bit of thanksgiving... hmm... maybe you can bring some thanksgiving to him?
The Astoria??? Orgazmic!
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
wow this is soo scary! ive heard about this disease/syndrome before as it as been a possible side effect of some meds i have taken in the past. What a horrible thing to have to deal with!! im glad your bro is starting to do better and should make a full recovery by christmas. Best wishes to you and your family in getting thru this and to your brother for being so strong to continue to fight off this awful condition!
Seems that needlessly it's getting harder
To find an approach and a way to live
Are we getting something out of this
all-encompassing trip?
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
Well here is the update you've all been waiting for. Scott got all of his tubes out this morning at 10:45am!!!!!!!!!!!!!!!!!!!! He is no longer on oxygen, or his feeding tube, and is doing great without the vent. He is extremely paranoid and weired out though.
Here are some highlights my mom told me about on the phone:
Scott told my parents that the "Scientists were turning up the voltage in his brain" and my dad said "I know a lot about electronics and you don't have any in your head" and Scott started screaming "LIARRRRRRRRRRRRRRRRRR"
Scott woke up and told his nurse he was and Asian American
The nurse told Scott "You're gonna be just fine" and he turned around and went "ne ne ne neeeeeee" and rolled his eyes as he made fun of her
He got into a fight with the nurse about remembering me being there at the hospital, and called her a liar.
He thought it was December
My parents told him that his school closed out his semester grades with what he had so far, and his response was "Lies lies lies LIESSSSSSSSS"
He asked the nurse to turn off the Mario Brothers game. After some confusion they figured out that he thought all of his machines beeping was a video game.
He didn't want to sit up in his chair for Physical Therapy so he started to making airplane noises and pretended he was a plane.
The nurse told him that she was going on lunch break and she'd be back later and he said "Please take me with you, I'm hungry too"
He also told my mom that he believe they are trying to kill him by putting things in his IVs.
And then he announced that he "Needed to take a Sh*t"
So all in all he's a little one the nutsy side today but thats totally his personality. I am SO freaking happy that he is off the tubes. My mom thinks maybe in like 5-6 days he could go home, but who knows.
Tonight he is getting a big dinner of ice chips, and if all goes well, then he gets some water ice. Lucky boy.
Thank you all for your continued support and thoughts. I will still keep you updated!
My husband was very paranoid right after his open heart surgery. I think it's all the medications. Hopefully this, too, will be food for fun a few weeks from now.
So happy about the good news
... and the will to show I will always be better than before.
Great news!!!! Thank you so much for the update! Going to be a very happy Thanksgiving for your family!
oxc
~*LIVE~LOVE~LAUGH*~
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
My mom called today to tell me that Scott is being released on Thursday!!!!!!!!!
While he is not completely healed and needs 24/7 supervision he will be discharged. My mom's job is wonderful, and she is on family leave for as long as she needs to be, so she is able to be his 24/7 nurse from here on out.
Again you people have been wonderful, and I can't thank you enough for all of your support.
Happy Thanksgiving to you all. Please remember your health this Thanksgiving and all of your loved ones!
My mom called today to tell me that Scott is being released on Thursday!!!!!!!!!
While he is not completely healed and needs 24/7 supervision he will be discharged. My mom's job is wonderful, and she is on family leave for as long as she needs to be, so she is able to be his 24/7 nurse from here on out.
Again you people have been wonderful, and I can't thank you enough for all of your support.
Happy Thanksgiving to you all. Please remember your health this Thanksgiving and all of your loved ones!
All my best,
Sarah
OMG, what an amazing gift! That is wonderful news. Congrats and continued good blessings to you and your family. Happy T-giving to you too!
"...like a word misplaced, nothing said, what a waste.."
"Sometimes life should be consumed in measured doses"
6-01-06
6/25/08
Free Speedy
and Metsy!
Good news about your brother! I hope you all had a wonderful Thanksgiving.
How's everything going? Is he still recovering well? And how are you doing with it all?
I was just thinking of you is all.
Jeanie,
Thanks for thinking of us! My brother did come home on thanksgiving day. I wasn't there :( though... I promised my husband that we could go to Michigan for thanksgiving so I could go home to Philly for Christmas. That way I would get to spend more time, and my brother should be much better by then to be able to enjoy company.
Anyways, so Scott lost 33lbs in the hospital bringing him down to 125lbs, and he is 6 feet tall, so he is SOOOO skinny my mom says. He has been trying to eat, but he isn't that interested. My mom has made it her personal mission to fatten him up. He has a hard time sleeping at night, and feels pretty out of it in the mornings. He will start tutoring with his teachers on monday, and hopefully be back in school after the christmas break. I am actually talking to him on Instant Messenger right now. He is in good spirits, and is his foul 16 year old boy self. Haha. My mom says his teachers have all pooled money together to get him gift cards, and sent him gift baskets. Which I thought was awesome. He is losing his toenails nows, but that was to be expected. He is off all meds, and only takes motrin. My mom didn't want him taking hardcore pain meds and getting addicted, so he's been really good about that.
But anyways, this year was a true blessing. He sounds amazing, and I can't wait to see him since I am left with the image of him on a breathing tube. 3 more weeks!
Thanks for thinking of us! My brother did come home on thanksgiving day. I wasn't there :( though... I promised my husband that we could go to Michigan for thanksgiving so I could go home to Philly for Christmas. That way I would get to spend more time, and my brother should be much better by then to be able to enjoy company.
Anyways, so Scott lost 33lbs in the hospital bringing him down to 125lbs, and he is 6 feet tall, so he is SOOOO skinny my mom says. He has been trying to eat, but he isn't that interested. My mom has made it her personal mission to fatten him up. He has a hard time sleeping at night, and feels pretty out of it in the mornings. He will start tutoring with his teachers on monday, and hopefully be back in school after the christmas break. I am actually talking to him on Instant Messenger right now. He is in good spirits, and is his foul 16 year old boy self. Haha. My mom says his teachers have all pooled money together to get him gift cards, and sent him gift baskets. Which I thought was awesome. He is losing his toenails nows, but that was to be expected. He is off all meds, and only takes motrin. My mom didn't want him taking hardcore pain meds and getting addicted, so he's been really good about that.
But anyways, this year was a true blessing. He sounds amazing, and I can't wait to see him since I am left with the image of him on a breathing tube. 3 more weeks!
Thanks again for your thoughts
Sarah
Well it's just I mentioned your brother's situation to my Mum back when you started the thread and we were both so upset and appalled that something so awful could happen and we were both wishing so much that he'd be ok. Anyway, she asked me if I'd had an update this morning and I remembered that I hadn't come back to thread since you guys had Thanksgiving and I forgot to post congrats then. So thought I'd better ask while I remembered! Mind of a goldfish here!
That's great that he's home and a good to know you'll be seeing him at Christmas too. Can your Mum supliment his diet with Sustegan for a while? It's got a lot of protein and stuff in it and we gave it to my gran a couple of times a day when she was struggling to eat and losing weight when she was ill. It's pretty useful. They even have a hospital formula with extra nutrients I think. And of all those kind of things it's actually one of the most pleasant tasting. Well I think anyway. Just a thought, but your Mum's probably got it covered anyway!
I'm so glad that it's all getting better and that he's feeling well enough to be a teenager again!
Anyway, it's all good news and I'm really happy to hear it.
How is he doing a week out of the hospital? I have a 16 year old son, it is not an easy age to be, and then to be sick on top of it!!! My son is 6 foot too, and 137 pounds...so your brother has got to be very thin. I hope all that TG food is fattening him up!!!
oxc
~*LIVE~LOVE~LAUGH*~
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
Comments
Peace
*MUSIC IS the expression of EMOTION.....and that POLITICS IS merely the DECOY of PERCEPTION*
.....song_Music & Politics....Michael Franti
*The scientists of today think deeply instead of clearly. One must be sane to think clearly, but one can think deeply and be quite INSANE*....Nikola Tesla(a man who shaped our world of electricity with his futuristic inventions)
"Sometimes life should be consumed in measured doses"
6-01-06
6/25/08
Free Speedy
and Metsy!
That is so great!
And if you think about it, I'm sure he'll play a pretty HUGE part in the REAL bit of thanksgiving... hmm... maybe you can bring some thanksgiving to him?
Verona??? it's all surmountable
Dublin 23.08.06 "The beauty of Ireland, right there!"
Wembley? We all believe!
Copenhagen?? your light made us stars
Chicago 07? And love
What a different life
Had I not found this love with you
8/08 - Ed solo in DC, 6/09 Ed in B'more,
10/10 - Brad in B'more
To find an approach and a way to live
Are we getting something out of this
all-encompassing trip?
damm this place is great .......
oxc
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
Well here is the update you've all been waiting for. Scott got all of his tubes out this morning at 10:45am!!!!!!!!!!!!!!!!!!!! He is no longer on oxygen, or his feeding tube, and is doing great without the vent. He is extremely paranoid and weired out though.
Here are some highlights my mom told me about on the phone:
Scott told my parents that the "Scientists were turning up the voltage in his brain" and my dad said "I know a lot about electronics and you don't have any in your head" and Scott started screaming "LIARRRRRRRRRRRRRRRRRR"
Scott woke up and told his nurse he was and Asian American
The nurse told Scott "You're gonna be just fine" and he turned around and went "ne ne ne neeeeeee" and rolled his eyes as he made fun of her
He got into a fight with the nurse about remembering me being there at the hospital, and called her a liar.
He thought it was December
My parents told him that his school closed out his semester grades with what he had so far, and his response was "Lies lies lies LIESSSSSSSSS"
He asked the nurse to turn off the Mario Brothers game. After some confusion they figured out that he thought all of his machines beeping was a video game.
He didn't want to sit up in his chair for Physical Therapy so he started to making airplane noises and pretended he was a plane.
The nurse told him that she was going on lunch break and she'd be back later and he said "Please take me with you, I'm hungry too"
He also told my mom that he believe they are trying to kill him by putting things in his IVs.
And then he announced that he "Needed to take a Sh*t"
So all in all he's a little one the nutsy side today but thats totally his personality. I am SO freaking happy that he is off the tubes. My mom thinks maybe in like 5-6 days he could go home, but who knows.
Tonight he is getting a big dinner of ice chips, and if all goes well, then he gets some water ice. Lucky boy.
Thank you all for your continued support and thoughts. I will still keep you updated!
Sarah
So happy about the good news
oxc
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown
San Diego 2003
Grand Rapids 2004
Grand Rapids 2006
Detroit 2006
Columbus 2010
"With my own two hands I can change the world."
My mom called today to tell me that Scott is being released on Thursday!!!!!!!!!
While he is not completely healed and needs 24/7 supervision he will be discharged. My mom's job is wonderful, and she is on family leave for as long as she needs to be, so she is able to be his 24/7 nurse from here on out.
Again you people have been wonderful, and I can't thank you enough for all of your support.
Happy Thanksgiving to you all. Please remember your health this Thanksgiving and all of your loved ones!
All my best,
Sarah
"Sometimes life should be consumed in measured doses"
6-01-06
6/25/08
Free Speedy
and Metsy!
Good news about your brother! I hope you all had a wonderful Thanksgiving.
How's everything going? Is he still recovering well? And how are you doing with it all?
I was just thinking of you is all.
*~You're IT Bert!~*
Hold on to the thread
The currents will shift
Jeanie,
Thanks for thinking of us! My brother did come home on thanksgiving day. I wasn't there :( though... I promised my husband that we could go to Michigan for thanksgiving so I could go home to Philly for Christmas. That way I would get to spend more time, and my brother should be much better by then to be able to enjoy company.
Anyways, so Scott lost 33lbs in the hospital bringing him down to 125lbs, and he is 6 feet tall, so he is SOOOO skinny my mom says. He has been trying to eat, but he isn't that interested. My mom has made it her personal mission to fatten him up. He has a hard time sleeping at night, and feels pretty out of it in the mornings. He will start tutoring with his teachers on monday, and hopefully be back in school after the christmas break. I am actually talking to him on Instant Messenger right now. He is in good spirits, and is his foul 16 year old boy self. Haha. My mom says his teachers have all pooled money together to get him gift cards, and sent him gift baskets. Which I thought was awesome. He is losing his toenails nows, but that was to be expected. He is off all meds, and only takes motrin. My mom didn't want him taking hardcore pain meds and getting addicted, so he's been really good about that.
But anyways, this year was a true blessing. He sounds amazing, and I can't wait to see him since I am left with the image of him on a breathing tube. 3 more weeks!
Thanks again for your thoughts
Sarah
Well it's just I mentioned your brother's situation to my Mum back when you started the thread and we were both so upset and appalled that something so awful could happen and we were both wishing so much that he'd be ok. Anyway, she asked me if I'd had an update this morning and I remembered that I hadn't come back to thread since you guys had Thanksgiving and I forgot to post congrats then. So thought I'd better ask while I remembered! Mind of a goldfish here!
That's great that he's home and a good to know you'll be seeing him at Christmas too. Can your Mum supliment his diet with Sustegan for a while? It's got a lot of protein and stuff in it and we gave it to my gran a couple of times a day when she was struggling to eat and losing weight when she was ill. It's pretty useful. They even have a hospital formula with extra nutrients I think. And of all those kind of things it's actually one of the most pleasant tasting. Well I think anyway. Just a thought, but your Mum's probably got it covered anyway!
I'm so glad that it's all getting better and that he's feeling well enough to be a teenager again!
Anyway, it's all good news and I'm really happy to hear it.
*~You're IT Bert!~*
Hold on to the thread
The currents will shift
oxc
*May the Peace of the Wilderness be with YOU*
He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion.
— Unknown