Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 Suzanne, I am sorry that has been so sick. I have been on TPN for 7 yrs and have traveled all over the country multiple times with it. Anyone who knows me knows keeping me in one city for more than a few months is hard to do! Last year I even went on the Disney Cruise with some friends with all my TPN and had a blast. Don't let TPN stop you from traveling. It is completely do-able. AND... will benefit greatly from getting away. Has ever had a wish before? The Starlight Foundation and the Sunshine Foundation grant wishes to chronically, disabled, and terminally ill children. I got a wish when I was 16 from the Sunshine Foundation and it was gave me something to look forward to. They grant wishes for computers, trips, meeting celebrities, etc....the sky is the limit! Sunshine Foundation goes through age 21 and I am sure that any kids/young people with chronic pancreatitis would qualify. www.starlight.org www.sunshinefoundation.org Also, do you see Dr. Berde in pain management at Boston Children's? I heard he is one of the best with children's pain. Also, there is a TPN support group for parents of children on TPN...I can't remember if you had joined that awhile ago or not...it is through yahoo groups and called TPNsupport. It's a great group for anyone (including adults) to join if they are on TPN. Everyone is very supportive and informative. Hope feels better and have fun on your trip!!! -Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 Malisa Thank you very much for your encouragement. We are getting all of our extra supplies together so we can leave tomorrow night. has not had a wish granted, but thank you for the information. We will look into it. And yes, does see Dr. Berde at Children's, but we deal mostly with his partner, Dr. Neville Sethna. He is wonderful too! Dr. Berde is very busy and travels alot. Dr. Sethna has done epidurals and nerve blocks on . They are talking about repeating the celiac plexus block when we come back, if is not any better. We will be travelling with his Demerol PCA as well. We're hoping that he can do without it for short periods, so that I can pull his needles from his port and he can swim. We'll just have to take it one day at a time. Suzanne On Thu, 12 Apr 2001 20:45:42 EDT Malilibear@... writes: > Suzanne, > I am sorry that has been so sick. I have been on TPN for 7 yrs > and have traveled all over the country multiple times with it. > Anyone who knows me knows keeping me in one city for more than a few > months is hard to do! > Last year I even went on the Disney Cruise with some friends with > all my TPN and had a blast. Don't let TPN stop you from traveling. > It is completely do-able. > AND... will benefit greatly from getting away. > > Has ever had a wish before? The Starlight Foundation and the > Sunshine Foundation grant wishes to chronically, disabled, and > terminally ill children. I got a wish when I was 16 from the > Sunshine Foundation and it was gave me something to look forward to. > They grant wishes for computers, trips, meeting celebrities, > etc....the sky is the limit! Sunshine Foundation goes through age 21 > and I am sure that any kids/young people with chronic pancreatitis > would qualify. > www.starlight.org > www.sunshinefoundation.org > > Also, do you see Dr. Berde in pain management at Boston Children's? > I heard he is one of the best with children's pain. > Also, there is a TPN support group for parents of children on > TPN...I can't remember if you had joined that awhile ago or not...it > is through yahoo groups and called TPNsupport. It's a great group > for anyone (including adults) to join if they are on TPN. Everyone > is very supportive and informative. > Hope feels better and have fun on your trip!!! > -Malisa > > > PANCREATITIS SUPPORT NETWORK > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: > Pancreatitisegroups > > To subscribe to this e-mail group, simply send an e-mail to: > Pancreatitis-subscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 Malisa Thank you very much for your encouragement. We are getting all of our extra supplies together so we can leave tomorrow night. has not had a wish granted, but thank you for the information. We will look into it. And yes, does see Dr. Berde at Children's, but we deal mostly with his partner, Dr. Neville Sethna. He is wonderful too! Dr. Berde is very busy and travels alot. Dr. Sethna has done epidurals and nerve blocks on . They are talking about repeating the celiac plexus block when we come back, if is not any better. We will be travelling with his Demerol PCA as well. We're hoping that he can do without it for short periods, so that I can pull his needles from his port and he can swim. We'll just have to take it one day at a time. Suzanne On Thu, 12 Apr 2001 20:45:42 EDT Malilibear@... writes: > Suzanne, > I am sorry that has been so sick. I have been on TPN for 7 yrs > and have traveled all over the country multiple times with it. > Anyone who knows me knows keeping me in one city for more than a few > months is hard to do! > Last year I even went on the Disney Cruise with some friends with > all my TPN and had a blast. Don't let TPN stop you from traveling. > It is completely do-able. > AND... will benefit greatly from getting away. > > Has ever had a wish before? The Starlight Foundation and the > Sunshine Foundation grant wishes to chronically, disabled, and > terminally ill children. I got a wish when I was 16 from the > Sunshine Foundation and it was gave me something to look forward to. > They grant wishes for computers, trips, meeting celebrities, > etc....the sky is the limit! Sunshine Foundation goes through age 21 > and I am sure that any kids/young people with chronic pancreatitis > would qualify. > www.starlight.org > www.sunshinefoundation.org > > Also, do you see Dr. Berde in pain management at Boston Children's? > I heard he is one of the best with children's pain. > Also, there is a TPN support group for parents of children on > TPN...I can't remember if you had joined that awhile ago or not...it > is through yahoo groups and called TPNsupport. It's a great group > for anyone (including adults) to join if they are on TPN. Everyone > is very supportive and informative. > Hope feels better and have fun on your trip!!! > -Malisa > > > PANCREATITIS SUPPORT NETWORK > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: > Pancreatitisegroups > > To subscribe to this e-mail group, simply send an e-mail to: > Pancreatitis-subscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2001 Report Share Posted April 13, 2001 Malisa Thank you very much for your encouragement. We are getting all of our extra supplies together so we can leave tomorrow night. has not had a wish granted, but thank you for the information. We will look into it. And yes, does see Dr. Berde at Children's, but we deal mostly with his partner, Dr. Neville Sethna. He is wonderful too! Dr. Berde is very busy and travels alot. Dr. Sethna has done epidurals and nerve blocks on . They are talking about repeating the celiac plexus block when we come back, if is not any better. We will be travelling with his Demerol PCA as well. We're hoping that he can do without it for short periods, so that I can pull his needles from his port and he can swim. We'll just have to take it one day at a time. Suzanne On Thu, 12 Apr 2001 20:45:42 EDT Malilibear@... writes: > Suzanne, > I am sorry that has been so sick. I have been on TPN for 7 yrs > and have traveled all over the country multiple times with it. > Anyone who knows me knows keeping me in one city for more than a few > months is hard to do! > Last year I even went on the Disney Cruise with some friends with > all my TPN and had a blast. Don't let TPN stop you from traveling. > It is completely do-able. > AND... will benefit greatly from getting away. > > Has ever had a wish before? The Starlight Foundation and the > Sunshine Foundation grant wishes to chronically, disabled, and > terminally ill children. I got a wish when I was 16 from the > Sunshine Foundation and it was gave me something to look forward to. > They grant wishes for computers, trips, meeting celebrities, > etc....the sky is the limit! Sunshine Foundation goes through age 21 > and I am sure that any kids/young people with chronic pancreatitis > would qualify. > www.starlight.org > www.sunshinefoundation.org > > Also, do you see Dr. Berde in pain management at Boston Children's? > I heard he is one of the best with children's pain. > Also, there is a TPN support group for parents of children on > TPN...I can't remember if you had joined that awhile ago or not...it > is through yahoo groups and called TPNsupport. It's a great group > for anyone (including adults) to join if they are on TPN. Everyone > is very supportive and informative. > Hope feels better and have fun on your trip!!! > -Malisa > > > PANCREATITIS SUPPORT NETWORK > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: > Pancreatitisegroups > > To subscribe to this e-mail group, simply send an e-mail to: > Pancreatitis-subscribeegroups > > Quote Link to comment Share on other sites More sharing options...
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