it sounds like you need to stongly evaluate where you are. the difference between hospitals can change outcomes dramatically. the knowledge and experience and care from doctors can make or break a situation, look into going somewhere else, and ask for help if you need to, but make sure you find the right place and then get help with the finances.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
Graysons huge step back
- Thread starter Tcole
- Start date
it sounds like you need to stongly evaluate where you are. the difference between hospitals can change outcomes dramatically. the knowledge and experience and care from doctors can make or break a situation, look into going somewhere else, and ask for help if you need to, but make sure you find the right place and then get help with the finances.
it sounds like you need to stongly evaluate where you are. the difference between hospitals can change outcomes dramatically. the knowledge and experience and care from doctors can make or break a situation, look into going somewhere else, and ask for help if you need to, but make sure you find the right place and then get help with the finances.
it sounds like you need to stongly evaluate where you are. the difference between hospitals can change outcomes dramatically. the knowledge and experience and care from doctors can make or break a situation, look into going somewhere else, and ask for help if you need to, but make sure you find the right place and then get help with the finances.
it sounds like you need to stongly evaluate where you are. the difference between hospitals can change outcomes dramatically. the knowledge and experience and care from doctors can make or break a situation, look into going somewhere else, and ask for help if you need to, but make sure you find the right place and then get help with the finances.
Your daughter is in the same hospital that my son has been in many times. It sounds like you aren't getting the answers you need. Have you tried to contact the Patient Liaison yet? I've never had to use them, but from what I understand they'll listen to your concerns and mediate between you and the doctors. I can PM you the phone number if you need it or the nurses should be able to get it for you also.You can also tell the nurses that you need a consult with a Nutritionist. They should be able to make that happen. The Nutritionists are not doctors and they don't wear a special uniform, so it's possible you may have spoken to them and not even known it.Hope your little one gets to go home soon!!!
Your daughter is in the same hospital that my son has been in many times. It sounds like you aren't getting the answers you need. Have you tried to contact the Patient Liaison yet? I've never had to use them, but from what I understand they'll listen to your concerns and mediate between you and the doctors. I can PM you the phone number if you need it or the nurses should be able to get it for you also.You can also tell the nurses that you need a consult with a Nutritionist. They should be able to make that happen. The Nutritionists are not doctors and they don't wear a special uniform, so it's possible you may have spoken to them and not even known it.Hope your little one gets to go home soon!!!
Your daughter is in the same hospital that my son has been in many times. It sounds like you aren't getting the answers you need. Have you tried to contact the Patient Liaison yet? I've never had to use them, but from what I understand they'll listen to your concerns and mediate between you and the doctors. I can PM you the phone number if you need it or the nurses should be able to get it for you also.You can also tell the nurses that you need a consult with a Nutritionist. They should be able to make that happen. The Nutritionists are not doctors and they don't wear a special uniform, so it's possible you may have spoken to them and not even known it.Hope your little one gets to go home soon!!!
Your daughter is in the same hospital that my son has been in many times. It sounds like you aren't getting the answers you need. Have you tried to contact the Patient Liaison yet? I've never had to use them, but from what I understand they'll listen to your concerns and mediate between you and the doctors. I can PM you the phone number if you need it or the nurses should be able to get it for you also.You can also tell the nurses that you need a consult with a Nutritionist. They should be able to make that happen. The Nutritionists are not doctors and they don't wear a special uniform, so it's possible you may have spoken to them and not even known it.Hope your little one gets to go home soon!!!
Your daughter is in the same hospital that my son has been in many times. It sounds like you aren't getting the answers you need. Have you tried to contact the Patient Liaison yet? I've never had to use them, but from what I understand they'll listen to your concerns and mediate between you and the doctors. I can PM you the phone number if you need it or the nurses should be able to get it for you also.<p>You can also tell the nurses that you need a consult with a Nutritionist. They should be able to make that happen. The Nutritionists are not doctors and they don't wear a special uniform, so it's possible you may have spoken to them and not even known it.<p>Hope your little one gets to go home soon!!!
TestifyToLove
New member
M spent his first 82 days in the hospital. MI, take down, had his gallbladder removed. Ultimately weight gain required enzymes and a g-tube. Strangely, they spent over 60 days debating whether he needed enzymes before prescribing them. Ultimately they messed with him so much and his birthmother checked out so throughly that he refused to eat at all, thus the g-tube placement.
We were not with him then. But, I've read his entire medical record from that period of time.
We were not with him then. But, I've read his entire medical record from that period of time.
TestifyToLove
New member
M spent his first 82 days in the hospital. MI, take down, had his gallbladder removed. Ultimately weight gain required enzymes and a g-tube. Strangely, they spent over 60 days debating whether he needed enzymes before prescribing them. Ultimately they messed with him so much and his birthmother checked out so throughly that he refused to eat at all, thus the g-tube placement.
We were not with him then. But, I've read his entire medical record from that period of time.
We were not with him then. But, I've read his entire medical record from that period of time.
TestifyToLove
New member
M spent his first 82 days in the hospital. MI, take down, had his gallbladder removed. Ultimately weight gain required enzymes and a g-tube. Strangely, they spent over 60 days debating whether he needed enzymes before prescribing them. Ultimately they messed with him so much and his birthmother checked out so throughly that he refused to eat at all, thus the g-tube placement.
We were not with him then. But, I've read his entire medical record from that period of time.
We were not with him then. But, I've read his entire medical record from that period of time.
TestifyToLove
New member
M spent his first 82 days in the hospital. MI, take down, had his gallbladder removed. Ultimately weight gain required enzymes and a g-tube. Strangely, they spent over 60 days debating whether he needed enzymes before prescribing them. Ultimately they messed with him so much and his birthmother checked out so throughly that he refused to eat at all, thus the g-tube placement.
We were not with him then. But, I've read his entire medical record from that period of time.
We were not with him then. But, I've read his entire medical record from that period of time.
TestifyToLove
New member
M spent his first 82 days in the hospital. MI, take down, had his gallbladder removed. Ultimately weight gain required enzymes and a g-tube. Strangely, they spent over 60 days debating whether he needed enzymes before prescribing them. Ultimately they messed with him so much and his birthmother checked out so throughly that he refused to eat at all, thus the g-tube placement.
<br />
<br />We were not with him then. But, I've read his entire medical record from that period of time.
<br />
<br />We were not with him then. But, I've read his entire medical record from that period of time.
lexisangels05
New member
I do understand. This is my first time on this website, so hi everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0"> My daughter's name is Lexi. She is 4 and has CF. She too was born with a MI. She had surgery the day she was born. They removed 75% of her small intestines. She was on TPN and Lipids for months. They did her take down after her second Broviac Catheter failed. She was so small and only 3 months old. At that time we could start trying to feed her by mouth, of course she did not have any idea how to suck a bottle and had to be taught.
She was then put back on TPN and Lipids which caused severe liver damage. They sent us to Duke and put us on the transplant list. With the help of the CF doctors and God, she was healed and never had to get that transplant. She weighed 9 lbs at 6 months old. Amazing huh! They started her on the right amount of enzymes with her formula and she started gaining on her own. No IV's or tube feeding! Praise God!
Lexi is now perfect. She is rarely sick at all. Her intestines have almost completely grown back, she weighs what every other 4 year old weighs, she gets a cold maybe once a year, and her liver functions are perfect!
I will be praying for you.
She was then put back on TPN and Lipids which caused severe liver damage. They sent us to Duke and put us on the transplant list. With the help of the CF doctors and God, she was healed and never had to get that transplant. She weighed 9 lbs at 6 months old. Amazing huh! They started her on the right amount of enzymes with her formula and she started gaining on her own. No IV's or tube feeding! Praise God!
Lexi is now perfect. She is rarely sick at all. Her intestines have almost completely grown back, she weighs what every other 4 year old weighs, she gets a cold maybe once a year, and her liver functions are perfect!
I will be praying for you.
lexisangels05
New member
I do understand. This is my first time on this website, so hi everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0"> My daughter's name is Lexi. She is 4 and has CF. She too was born with a MI. She had surgery the day she was born. They removed 75% of her small intestines. She was on TPN and Lipids for months. They did her take down after her second Broviac Catheter failed. She was so small and only 3 months old. At that time we could start trying to feed her by mouth, of course she did not have any idea how to suck a bottle and had to be taught.
She was then put back on TPN and Lipids which caused severe liver damage. They sent us to Duke and put us on the transplant list. With the help of the CF doctors and God, she was healed and never had to get that transplant. She weighed 9 lbs at 6 months old. Amazing huh! They started her on the right amount of enzymes with her formula and she started gaining on her own. No IV's or tube feeding! Praise God!
Lexi is now perfect. She is rarely sick at all. Her intestines have almost completely grown back, she weighs what every other 4 year old weighs, she gets a cold maybe once a year, and her liver functions are perfect!
I will be praying for you.
She was then put back on TPN and Lipids which caused severe liver damage. They sent us to Duke and put us on the transplant list. With the help of the CF doctors and God, she was healed and never had to get that transplant. She weighed 9 lbs at 6 months old. Amazing huh! They started her on the right amount of enzymes with her formula and she started gaining on her own. No IV's or tube feeding! Praise God!
Lexi is now perfect. She is rarely sick at all. Her intestines have almost completely grown back, she weighs what every other 4 year old weighs, she gets a cold maybe once a year, and her liver functions are perfect!
I will be praying for you.
lexisangels05
New member
I do understand. This is my first time on this website, so hi everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0"> My daughter's name is Lexi. She is 4 and has CF. She too was born with a MI. She had surgery the day she was born. They removed 75% of her small intestines. She was on TPN and Lipids for months. They did her take down after her second Broviac Catheter failed. She was so small and only 3 months old. At that time we could start trying to feed her by mouth, of course she did not have any idea how to suck a bottle and had to be taught.
She was then put back on TPN and Lipids which caused severe liver damage. They sent us to Duke and put us on the transplant list. With the help of the CF doctors and God, she was healed and never had to get that transplant. She weighed 9 lbs at 6 months old. Amazing huh! They started her on the right amount of enzymes with her formula and she started gaining on her own. No IV's or tube feeding! Praise God!
Lexi is now perfect. She is rarely sick at all. Her intestines have almost completely grown back, she weighs what every other 4 year old weighs, she gets a cold maybe once a year, and her liver functions are perfect!
I will be praying for you.
She was then put back on TPN and Lipids which caused severe liver damage. They sent us to Duke and put us on the transplant list. With the help of the CF doctors and God, she was healed and never had to get that transplant. She weighed 9 lbs at 6 months old. Amazing huh! They started her on the right amount of enzymes with her formula and she started gaining on her own. No IV's or tube feeding! Praise God!
Lexi is now perfect. She is rarely sick at all. Her intestines have almost completely grown back, she weighs what every other 4 year old weighs, she gets a cold maybe once a year, and her liver functions are perfect!
I will be praying for you.
lexisangels05
New member
I do understand. This is my first time on this website, so hi everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0"> My daughter's name is Lexi. She is 4 and has CF. She too was born with a MI. She had surgery the day she was born. They removed 75% of her small intestines. She was on TPN and Lipids for months. They did her take down after her second Broviac Catheter failed. She was so small and only 3 months old. At that time we could start trying to feed her by mouth, of course she did not have any idea how to suck a bottle and had to be taught.
She was then put back on TPN and Lipids which caused severe liver damage. They sent us to Duke and put us on the transplant list. With the help of the CF doctors and God, she was healed and never had to get that transplant. She weighed 9 lbs at 6 months old. Amazing huh! They started her on the right amount of enzymes with her formula and she started gaining on her own. No IV's or tube feeding! Praise God!
Lexi is now perfect. She is rarely sick at all. Her intestines have almost completely grown back, she weighs what every other 4 year old weighs, she gets a cold maybe once a year, and her liver functions are perfect!
I will be praying for you.
She was then put back on TPN and Lipids which caused severe liver damage. They sent us to Duke and put us on the transplant list. With the help of the CF doctors and God, she was healed and never had to get that transplant. She weighed 9 lbs at 6 months old. Amazing huh! They started her on the right amount of enzymes with her formula and she started gaining on her own. No IV's or tube feeding! Praise God!
Lexi is now perfect. She is rarely sick at all. Her intestines have almost completely grown back, she weighs what every other 4 year old weighs, she gets a cold maybe once a year, and her liver functions are perfect!
I will be praying for you.
lexisangels05
New member
I do understand. This is my first time on this website, so hi everyone!<img src="i/expressions/face-icon-small-smile.gif" border="0"> My daughter's name is Lexi. She is 4 and has CF. She too was born with a MI. She had surgery the day she was born. They removed 75% of her small intestines. She was on TPN and Lipids for months. They did her take down after her second Broviac Catheter failed. She was so small and only 3 months old. At that time we could start trying to feed her by mouth, of course she did not have any idea how to suck a bottle and had to be taught.
<br />She was then put back on TPN and Lipids which caused severe liver damage. They sent us to Duke and put us on the transplant list. With the help of the CF doctors and God, she was healed and never had to get that transplant. She weighed 9 lbs at 6 months old. Amazing huh! They started her on the right amount of enzymes with her formula and she started gaining on her own. No IV's or tube feeding! Praise God!
<br />Lexi is now perfect. She is rarely sick at all. Her intestines have almost completely grown back, she weighs what every other 4 year old weighs, she gets a cold maybe once a year, and her liver functions are perfect!
<br />I will be praying for you.
<br />She was then put back on TPN and Lipids which caused severe liver damage. They sent us to Duke and put us on the transplant list. With the help of the CF doctors and God, she was healed and never had to get that transplant. She weighed 9 lbs at 6 months old. Amazing huh! They started her on the right amount of enzymes with her formula and she started gaining on her own. No IV's or tube feeding! Praise God!
<br />Lexi is now perfect. She is rarely sick at all. Her intestines have almost completely grown back, she weighs what every other 4 year old weighs, she gets a cold maybe once a year, and her liver functions are perfect!
<br />I will be praying for you.