Re: update on my and my daugher

[Guest guest]

,

Sorry to hear about 's lungs. Please know that you are both in my thoughts and prayers.Hugs, Kim

[Guest guest]

, stay strong. Let her see her mother's strength. I know it has to be harder than I could ever imagine, but I pray that God touches her sickness and makes her well. And I pray for you and your family as you struggle to do your best for her.

Jon

"Do not wait for ideal circumstances, nor the best opportunities; they will never come." - Janet E. Stuart

-----Original Message-----From: Jensen Sent: Tuesday, July 06, 2004 12:52 PMTo: OURWEIGHTLOSSJOURNEYYAHOOGROUPS (DOT) COMSubject: update on my and my daugher

I know I haven't been much of a support to you all here lately. I have read most of the emails but haven't responded much and for this I'm sorry. I received all of your well-wishes when my daughter was in the hospital and I thank you for them. They really helped me.

I wanted to let you all know what is going on with me and my daughter. She has a very complex anatamy with her heart and lungs. She doesn't have a direct connection between her heart and lungs and she has several heart defects as well. She has had 5 heart surgeries starting when she was 5 months old - 7 yrs old. She has had 2 major strokes and hemorraging with these surgeries. They have run out of things to do for her and an heart/lung transplant is out of the question with her history of bleeding and having strokes. So for about 10 years we have known that she would eventually die of her heart defects. The specialists have told us some of the ways she could die but of course nobody (but God) knows when or how.

I need to tell you that most kids whose anatomy's are like 's and as severe as hers usually don't live this long so we are treading new waters here. Part of 's main problems is that her pulmonary arteries (that go from lung to lung - her's don't even connect to the heart like they are supposed to) are extremely narrow and they don't connect to all of the lungs. The branches only reach about 1/3 of each lung. She grew blood vesels from her aorta (the artery that is high pressure and takes blood from the heart to the body) to her lungs and that's how she gets most of the blood to her lungs. (I hope I haven't confused you too much yet - I have to draw diagrams for doctors sometimes! lol)

Anyway... some of these blood vessels are getting too big and were causing the right lung to bleed because the lungs are low pressure and the blood coming through those vessels are high pressure. During 's procedure 2 weeks ago they looked at everything and they saw many of these blood vessels that could potentially bleed. They normally deal with this type of problem with children with cystic fibrosis and they close off all collaterals (these high pressure blood vessels) to prevent them from bleeding. The problem with doing this is on that she doesn't have blood supply coming through her pulmonary artery and these other blood vesels are essencial to the survival of her lungs. We received devistating news that she has already lost 1/3 of her right lung. She no longer has use of it so they can't afford to lose any more lung tissue. On the other hand, they didn't want to let her hemorrhage.... so... They closed off two very large blood vessels. has stopped coughing up blood - which is GREAT! But she is extremely fatigued, has constant stomach aches and headaches and her oxygen saturation seems to be lower than her normal. My gut feeling is that her body is not happy with the decreased amount of blood supply to her lungs.

To sum things up: we're in big trouble. She is much sicker than we originally thought and I feel like she is slipping away. She had an extremely tough weekend. She is a teenager and has those horrid hormones and all the "poor me" and "it's not fair" feelings and she was just crying most of Saturday. She was yelling at her brothers and even at me... it just broke my heart. She was fighting having a nap and she got way too tired. She did finally nap and she slept on Sunday as well. We had plans as a family to go watch the 4th of July fireworks - which she always looks forward to seeing... so we went and she was so exhausted she didn't even hardly enjoy it. :-( She slept most of the day yesterday and is in bed this morning. I'm taking her to the doctor in a little while but I sure don't know what they can do for her.

Please keep us in your prayers. We are on a very tough road - one which I feel may be extremely hard. I don't know if we are nearing the end or if she will be this ill for a long time to come. I keep hoping that maybe she is just fighting something or is just not quite recovered from her procedure... but my gut feeling is that she is deteriorating quickly.

I appreciate your emails and I'll try to continue to read and respond when I can. IF things calm down a bit here I really want to get back OP but I know I'm stressed out enough already. I don't need to try to stick to a strict eating and exercise plan.... especially when I'm up at 2:00am with Jess and my tummy is growling as I'm getting her some crackers for her tummy ache.

(((((Hugs)))))

~, mom to 16!!! (pulmonary atresia, VSD, severe PA stenosis & considered hypoplastic, nonconfluent PA branches, overriding aorta, hypertrophied RV, moderate aortic valve leak, pulmonary hypertension and pulmonary bleeds, 5 heart surgeries, 2 strokes, Di, extra fingers and toe- surgery to remove them, recent bronchoscopy and cath to coil some collaterals, reflux, developmental delays from strokes, asthma, cyanotic, now terminal - huge Power Ranger and Harry Potter fan), Justen 18 ( ADD and the absent-minded professor- Graduate!) , 10 (depression, anxiety & ADD - awesome kid and webelo scout) and Austin 8 (asthma - fun loving and outgoing) , wife to Karl (best woodworker in the SouthWest!) See us at www.angelfire.com/oh4/jensenland

[Guest guest]

, stay strong. Let her see her mother's strength. I know it has to be harder than I could ever imagine, but I pray that God touches her sickness and makes her well. And I pray for you and your family as you struggle to do your best for her.

Jon

"Do not wait for ideal circumstances, nor the best opportunities; they will never come." - Janet E. Stuart

-----Original Message-----From: Jensen Sent: Tuesday, July 06, 2004 12:52 PMTo: OURWEIGHTLOSSJOURNEYYAHOOGROUPS (DOT) COMSubject: update on my and my daugher

I know I haven't been much of a support to you all here lately. I have read most of the emails but haven't responded much and for this I'm sorry. I received all of your well-wishes when my daughter was in the hospital and I thank you for them. They really helped me.

I wanted to let you all know what is going on with me and my daughter. She has a very complex anatamy with her heart and lungs. She doesn't have a direct connection between her heart and lungs and she has several heart defects as well. She has had 5 heart surgeries starting when she was 5 months old - 7 yrs old. She has had 2 major strokes and hemorraging with these surgeries. They have run out of things to do for her and an heart/lung transplant is out of the question with her history of bleeding and having strokes. So for about 10 years we have known that she would eventually die of her heart defects. The specialists have told us some of the ways she could die but of course nobody (but God) knows when or how.

I need to tell you that most kids whose anatomy's are like 's and as severe as hers usually don't live this long so we are treading new waters here. Part of 's main problems is that her pulmonary arteries (that go from lung to lung - her's don't even connect to the heart like they are supposed to) are extremely narrow and they don't connect to all of the lungs. The branches only reach about 1/3 of each lung. She grew blood vesels from her aorta (the artery that is high pressure and takes blood from the heart to the body) to her lungs and that's how she gets most of the blood to her lungs. (I hope I haven't confused you too much yet - I have to draw diagrams for doctors sometimes! lol)

Anyway... some of these blood vessels are getting too big and were causing the right lung to bleed because the lungs are low pressure and the blood coming through those vessels are high pressure. During 's procedure 2 weeks ago they looked at everything and they saw many of these blood vessels that could potentially bleed. They normally deal with this type of problem with children with cystic fibrosis and they close off all collaterals (these high pressure blood vessels) to prevent them from bleeding. The problem with doing this is on that she doesn't have blood supply coming through her pulmonary artery and these other blood vesels are essencial to the survival of her lungs. We received devistating news that she has already lost 1/3 of her right lung. She no longer has use of it so they can't afford to lose any more lung tissue. On the other hand, they didn't want to let her hemorrhage.... so... They closed off two very large blood vessels. has stopped coughing up blood - which is GREAT! But she is extremely fatigued, has constant stomach aches and headaches and her oxygen saturation seems to be lower than her normal. My gut feeling is that her body is not happy with the decreased amount of blood supply to her lungs.

To sum things up: we're in big trouble. She is much sicker than we originally thought and I feel like she is slipping away. She had an extremely tough weekend. She is a teenager and has those horrid hormones and all the "poor me" and "it's not fair" feelings and she was just crying most of Saturday. She was yelling at her brothers and even at me... it just broke my heart. She was fighting having a nap and she got way too tired. She did finally nap and she slept on Sunday as well. We had plans as a family to go watch the 4th of July fireworks - which she always looks forward to seeing... so we went and she was so exhausted she didn't even hardly enjoy it. :-( She slept most of the day yesterday and is in bed this morning. I'm taking her to the doctor in a little while but I sure don't know what they can do for her.

Please keep us in your prayers. We are on a very tough road - one which I feel may be extremely hard. I don't know if we are nearing the end or if she will be this ill for a long time to come. I keep hoping that maybe she is just fighting something or is just not quite recovered from her procedure... but my gut feeling is that she is deteriorating quickly.

I appreciate your emails and I'll try to continue to read and respond when I can. IF things calm down a bit here I really want to get back OP but I know I'm stressed out enough already. I don't need to try to stick to a strict eating and exercise plan.... especially when I'm up at 2:00am with Jess and my tummy is growling as I'm getting her some crackers for her tummy ache.

(((((Hugs)))))

~, mom to 16!!! (pulmonary atresia, VSD, severe PA stenosis & considered hypoplastic, nonconfluent PA branches, overriding aorta, hypertrophied RV, moderate aortic valve leak, pulmonary hypertension and pulmonary bleeds, 5 heart surgeries, 2 strokes, Di, extra fingers and toe- surgery to remove them, recent bronchoscopy and cath to coil some collaterals, reflux, developmental delays from strokes, asthma, cyanotic, now terminal - huge Power Ranger and Harry Potter fan), Justen 18 ( ADD and the absent-minded professor- Graduate!) , 10 (depression, anxiety & ADD - awesome kid and webelo scout) and Austin 8 (asthma - fun loving and outgoing) , wife to Karl (best woodworker in the SouthWest!) See us at www.angelfire.com/oh4/jensenland

[Guest guest]

, stay strong. Let her see her mother's strength. I know it has to be harder than I could ever imagine, but I pray that God touches her sickness and makes her well. And I pray for you and your family as you struggle to do your best for her.

Jon

"Do not wait for ideal circumstances, nor the best opportunities; they will never come." - Janet E. Stuart

-----Original Message-----From: Jensen Sent: Tuesday, July 06, 2004 12:52 PMTo: OURWEIGHTLOSSJOURNEYYAHOOGROUPS (DOT) COMSubject: update on my and my daugher

I know I haven't been much of a support to you all here lately. I have read most of the emails but haven't responded much and for this I'm sorry. I received all of your well-wishes when my daughter was in the hospital and I thank you for them. They really helped me.

I wanted to let you all know what is going on with me and my daughter. She has a very complex anatamy with her heart and lungs. She doesn't have a direct connection between her heart and lungs and she has several heart defects as well. She has had 5 heart surgeries starting when she was 5 months old - 7 yrs old. She has had 2 major strokes and hemorraging with these surgeries. They have run out of things to do for her and an heart/lung transplant is out of the question with her history of bleeding and having strokes. So for about 10 years we have known that she would eventually die of her heart defects. The specialists have told us some of the ways she could die but of course nobody (but God) knows when or how.

I need to tell you that most kids whose anatomy's are like 's and as severe as hers usually don't live this long so we are treading new waters here. Part of 's main problems is that her pulmonary arteries (that go from lung to lung - her's don't even connect to the heart like they are supposed to) are extremely narrow and they don't connect to all of the lungs. The branches only reach about 1/3 of each lung. She grew blood vesels from her aorta (the artery that is high pressure and takes blood from the heart to the body) to her lungs and that's how she gets most of the blood to her lungs. (I hope I haven't confused you too much yet - I have to draw diagrams for doctors sometimes! lol)

Anyway... some of these blood vessels are getting too big and were causing the right lung to bleed because the lungs are low pressure and the blood coming through those vessels are high pressure. During 's procedure 2 weeks ago they looked at everything and they saw many of these blood vessels that could potentially bleed. They normally deal with this type of problem with children with cystic fibrosis and they close off all collaterals (these high pressure blood vessels) to prevent them from bleeding. The problem with doing this is on that she doesn't have blood supply coming through her pulmonary artery and these other blood vesels are essencial to the survival of her lungs. We received devistating news that she has already lost 1/3 of her right lung. She no longer has use of it so they can't afford to lose any more lung tissue. On the other hand, they didn't want to let her hemorrhage.... so... They closed off two very large blood vessels. has stopped coughing up blood - which is GREAT! But she is extremely fatigued, has constant stomach aches and headaches and her oxygen saturation seems to be lower than her normal. My gut feeling is that her body is not happy with the decreased amount of blood supply to her lungs.

To sum things up: we're in big trouble. She is much sicker than we originally thought and I feel like she is slipping away. She had an extremely tough weekend. She is a teenager and has those horrid hormones and all the "poor me" and "it's not fair" feelings and she was just crying most of Saturday. She was yelling at her brothers and even at me... it just broke my heart. She was fighting having a nap and she got way too tired. She did finally nap and she slept on Sunday as well. We had plans as a family to go watch the 4th of July fireworks - which she always looks forward to seeing... so we went and she was so exhausted she didn't even hardly enjoy it. :-( She slept most of the day yesterday and is in bed this morning. I'm taking her to the doctor in a little while but I sure don't know what they can do for her.

Please keep us in your prayers. We are on a very tough road - one which I feel may be extremely hard. I don't know if we are nearing the end or if she will be this ill for a long time to come. I keep hoping that maybe she is just fighting something or is just not quite recovered from her procedure... but my gut feeling is that she is deteriorating quickly.

I appreciate your emails and I'll try to continue to read and respond when I can. IF things calm down a bit here I really want to get back OP but I know I'm stressed out enough already. I don't need to try to stick to a strict eating and exercise plan.... especially when I'm up at 2:00am with Jess and my tummy is growling as I'm getting her some crackers for her tummy ache.

(((((Hugs)))))

~, mom to 16!!! (pulmonary atresia, VSD, severe PA stenosis & considered hypoplastic, nonconfluent PA branches, overriding aorta, hypertrophied RV, moderate aortic valve leak, pulmonary hypertension and pulmonary bleeds, 5 heart surgeries, 2 strokes, Di, extra fingers and toe- surgery to remove them, recent bronchoscopy and cath to coil some collaterals, reflux, developmental delays from strokes, asthma, cyanotic, now terminal - huge Power Ranger and Harry Potter fan), Justen 18 ( ADD and the absent-minded professor- Graduate!) , 10 (depression, anxiety & ADD - awesome kid and webelo scout) and Austin 8 (asthma - fun loving and outgoing) , wife to Karl (best woodworker in the SouthWest!) See us at www.angelfire.com/oh4/jensenland

[Guest guest]

,

I am so sorry to hear about Jess. Please know Jess, you and your family are in my prayers. I wish there was something I could do to help, if there is...please let me know! *hugs*

~Coco~

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6/21/04