Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 , Just remember how much these little CHARGErs are fighters, not to mention stubborn! We will all be sending positive thoughts your way and hoping for her lungs & heart to get well really soon. I am so sorry you are having to spend your holidays in PICU, please give Sue & na our love and thanks for keeping us posted, I have been wondering how she has been. Lots of love, Mom to Kennedy 22 mos old CHARGEr, 10, 8, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716 ICQ #1426476 na Update 12/22/99 From: johncampanale@... To all, Just a quick update on na... She is still in the hospital, many more of the problems that I spoke about before. But the RSV is over. She is very ill, I would term it very critical but stable. She is on the vent still and on an experimental drug for her lung/heart problems. We have been lucky that Nemours in ville, Fl is testing Nitric Oxide for Pulmonary hypertension. When they spoke about this to us, they didn't give her much hope without it. Her lungs have been sick for soo long that they have no compliance anymore. On top of that her Pulmonary pressures are so high, like 90% of cuff systolic that they didn't give her much to go on. They have said that she is in right sided heart failure now because of the lungs being so sick.. They cannot tell if the heart caused the lung problem or the other way around. It was so bad that Sunday or Monday(the days are running together), they asked what we thought about a limited DNR as if her heart was to give out because of the Pulmonary hypertension that running a code wouldn't any good. They will do everything they can without chest compressions or defibrillator. She is holding her own right now but has been on very high vent settings and on the expermintial drug, that if she makes it (I beleive she will) she has a long way to go. She is sedated and parilized so not to fight the vent but now she has blown up like a ballon. They hope that they can get the fluid off of her lungs and body but that has been a battle as well. I am staying in the hotel in the hospital and Sue is staying in the PICU room with na. I got the laptop working for now so I should be able to keep in touch better with you all, I did get to read most of the replies that you sent before the crash. Thanks so very much for all the words that you have sent. Have a thoughtful and happy holiday, ours will be spent in the PICU.... Thanks again Campanale --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 JUST WANT YOU TO KNOW MY PRAYERS ARE WITH YOU. KEEP FIGHTING BRIANNA. > na Update 12/22/99 > > From: johncampanale@... > > To all, > > Just a quick update on na... > > She is still in the hospital, many more of the problems that I spoke about > before. But the RSV is over. > She is very ill, I would term it very critical but stable. She is on the > vent still and on an experimental drug for her lung/heart problems. We > have been lucky that Nemours in ville, Fl is testing Nitric Oxide > for > Pulmonary hypertension. When they spoke about this to us, they didn't > give her much hope without it. Her lungs have been sick for soo long that > they have no compliance anymore. On top of that her > Pulmonary pressures are so high, like 90% of cuff systolic that they > didn't give her much to go on. They have said that she is in right sided > heart failure now because of the lungs being so sick.. They cannot tell > if the heart caused the lung problem or the other way around. It was so > bad that Sunday or Monday(the days are running together), they asked what > we thought about a limited DNR as if her heart was to give out because of > the Pulmonary hypertension that running a code wouldn't any good. They > will do everything they can without chest compressions or defibrillator. > She is holding her own right now but has been on very high vent settings > and on the expermintial drug, that if she makes it (I beleive she will) > she has a long way to go. She is sedated and parilized so not to fight > the vent but now she has blown up like a ballon. They hope that they can > get the fluid off of her lungs and body but that has been a battle as > well. I am staying in the hotel in the hospital and Sue is staying in the > PICU room with na. I got the laptop working for now so I should be > able to keep in touch better with you all, I did get to read most of the > replies that you sent before the crash. > > Thanks so very much for all the words that you have sent. > Have a thoughtful and happy holiday, ours will be spent in the PICU.... > > Thanks again > > Campanale > > > For information about the CHARGE Syndrome Foundation or to become a member > please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 JUST WANT YOU TO KNOW MY PRAYERS ARE WITH YOU. KEEP FIGHTING BRIANNA. > na Update 12/22/99 > > From: johncampanale@... > > To all, > > Just a quick update on na... > > She is still in the hospital, many more of the problems that I spoke about > before. But the RSV is over. > She is very ill, I would term it very critical but stable. She is on the > vent still and on an experimental drug for her lung/heart problems. We > have been lucky that Nemours in ville, Fl is testing Nitric Oxide > for > Pulmonary hypertension. When they spoke about this to us, they didn't > give her much hope without it. Her lungs have been sick for soo long that > they have no compliance anymore. On top of that her > Pulmonary pressures are so high, like 90% of cuff systolic that they > didn't give her much to go on. They have said that she is in right sided > heart failure now because of the lungs being so sick.. They cannot tell > if the heart caused the lung problem or the other way around. It was so > bad that Sunday or Monday(the days are running together), they asked what > we thought about a limited DNR as if her heart was to give out because of > the Pulmonary hypertension that running a code wouldn't any good. They > will do everything they can without chest compressions or defibrillator. > She is holding her own right now but has been on very high vent settings > and on the expermintial drug, that if she makes it (I beleive she will) > she has a long way to go. She is sedated and parilized so not to fight > the vent but now she has blown up like a ballon. They hope that they can > get the fluid off of her lungs and body but that has been a battle as > well. I am staying in the hotel in the hospital and Sue is staying in the > PICU room with na. I got the laptop working for now so I should be > able to keep in touch better with you all, I did get to read most of the > replies that you sent before the crash. > > Thanks so very much for all the words that you have sent. > Have a thoughtful and happy holiday, ours will be spent in the PICU.... > > Thanks again > > Campanale > > > For information about the CHARGE Syndrome Foundation or to become a member > please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 JUST WANT YOU TO KNOW MY PRAYERS ARE WITH YOU. KEEP FIGHTING BRIANNA. > na Update 12/22/99 > > From: johncampanale@... > > To all, > > Just a quick update on na... > > She is still in the hospital, many more of the problems that I spoke about > before. But the RSV is over. > She is very ill, I would term it very critical but stable. She is on the > vent still and on an experimental drug for her lung/heart problems. We > have been lucky that Nemours in ville, Fl is testing Nitric Oxide > for > Pulmonary hypertension. When they spoke about this to us, they didn't > give her much hope without it. Her lungs have been sick for soo long that > they have no compliance anymore. On top of that her > Pulmonary pressures are so high, like 90% of cuff systolic that they > didn't give her much to go on. They have said that she is in right sided > heart failure now because of the lungs being so sick.. They cannot tell > if the heart caused the lung problem or the other way around. It was so > bad that Sunday or Monday(the days are running together), they asked what > we thought about a limited DNR as if her heart was to give out because of > the Pulmonary hypertension that running a code wouldn't any good. They > will do everything they can without chest compressions or defibrillator. > She is holding her own right now but has been on very high vent settings > and on the expermintial drug, that if she makes it (I beleive she will) > she has a long way to go. She is sedated and parilized so not to fight > the vent but now she has blown up like a ballon. They hope that they can > get the fluid off of her lungs and body but that has been a battle as > well. I am staying in the hotel in the hospital and Sue is staying in the > PICU room with na. I got the laptop working for now so I should be > able to keep in touch better with you all, I did get to read most of the > replies that you sent before the crash. > > Thanks so very much for all the words that you have sent. > Have a thoughtful and happy holiday, ours will be spent in the PICU.... > > Thanks again > > Campanale > > > For information about the CHARGE Syndrome Foundation or to become a member > please contact marion@.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 , Our hearts and prayers are with you all as na recovers from this very, very difficult illness. Please know we are thinking of you and sending strength and love. keedy@... Portland, OR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 , Our hearts and prayers are with you all as na recovers from this very, very difficult illness. Please know we are thinking of you and sending strength and love. keedy@... Portland, OR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 johncampanale@... wrote: > > From: johncampanale@... > > To all, > > Just a quick update on na... > > She is still in the hospital, many more of the problems that I spoke about before. But the RSV is over. > She is very ill, I would term it very critical but stable. She is on the vent still and on an experimental drug for her lung/heart problems. We have been lucky that Nemours in ville, Fl is testing Nitric Oxide for > Pulmonary hypertension. When they spoke about this to us, they didn't give her much hope without it. Her lungs have been sick for soo long that they have no compliance anymore. On top of that her > > > Thanks so very much for all the words that you have sent. > Have a thoughtful and happy holiday, ours will be spent in the PICU.... > > Thanks again > > Campanale , I am so sorry for what you're all going through! na's a fighter. Please know that we're all thinking of you over this difficult holiday season. Jeanie Colp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 johncampanale@... wrote: > > From: johncampanale@... > > To all, > > Just a quick update on na... > > She is still in the hospital, many more of the problems that I spoke about before. But the RSV is over. > She is very ill, I would term it very critical but stable. She is on the vent still and on an experimental drug for her lung/heart problems. We have been lucky that Nemours in ville, Fl is testing Nitric Oxide for > Pulmonary hypertension. When they spoke about this to us, they didn't give her much hope without it. Her lungs have been sick for soo long that they have no compliance anymore. On top of that her > > > Thanks so very much for all the words that you have sent. > Have a thoughtful and happy holiday, ours will be spent in the PICU.... > > Thanks again > > Campanale , I am so sorry for what you're all going through! na's a fighter. Please know that we're all thinking of you over this difficult holiday season. Jeanie Colp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 and Sue: Just wantde you guys to know that I have been and will continue to pray for na's recovery Ana Saruski Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 You are all in my thoughts and prayers. Hang in there, na.... Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 1999 Report Share Posted December 23, 1999 , Our prayers are with you and your family. The Ginns Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 1999 Report Share Posted December 24, 1999 Best wishes to you all. Our prayers and thoughts are with you. Love from Marea Maurie and Ellen Howe na Update 12/22/99 >From: johncampanale@... > >To all, > >Just a quick update on na... > >She is still in the hospital, many more of the problems that I spoke about before. But the RSV is over. >She is very ill, I would term it very critical but stable. She is on the vent still and on an experimental drug for her lung/heart problems. We have been lucky that Nemours in ville, Fl is testing Nitric Oxide for >Pulmonary hypertension. When they spoke about this to us, they didn't give her much hope without it. Her lungs have been sick for soo long that they have no compliance anymore. On top of that her >Pulmonary pressures are so high, like 90% of cuff systolic that they didn't give her much to go on. They have said that she is in right sided heart failure now because of the lungs being so sick.. They cannot tell if the heart caused the lung problem or the other way around. It was so bad that Sunday or Monday(the days are running together), they asked what we thought about a limited DNR as if her heart was to give out because of the Pulmonary hypertension that running a code wouldn't any good. They will do everything they can without chest compressions or defibrillator. She is holding her own right now but has been on very high vent settings and on the expermintial drug, that if she makes it (I beleive she will) she has a long way to go. She is sedated and parilized so not to fight the vent but now she has blown up like a ballon. They hope that they can get the fluid off of her lungs and body but that has been a battle as well. I am staying in the hotel in the hospital and Sue is staying in the PICU room with na. I got the laptop working for now so I should be able to keep in touch better with you all, I did get to read most of the replies that you sent before the crash. > > Thanks so very much for all the words that you have sent. >Have a thoughtful and happy holiday, ours will be spent in the PICU.... > >Thanks again > > Campanale > >>For information about the CHARGE Syndrome Foundation or to become a member please contact marion@.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 1999 Report Share Posted December 24, 1999 Just know that the Ogans are also thinking of you and praying for the best for na. These kids can do amazing things, but that is up to God to give them the strength. We will continue to pray for your family that, in this season of hope, na continues to bless your lives. Friends in CHARGE, Marilyn, Rick, Ken & (CHARGEr) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 1999 Report Share Posted December 24, 1999 , I am behind in my emails and just read this this AM (12/24). Our thoughts and prayers are with you and na. Janet Wife to Matt Mom to & (CHaRGEr) 7 1/2, nne 2 3/4 Mom to 19 months. Weymouth, Massachusetts, USA <A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</ A> Quote Link to comment Share on other sites More sharing options...
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