Should we move her to another CF hospital

[pnhuffman]

When Austin was diagnosed he was 7 months old but he only stayed for like 2 weeks. He currently attends Dayton Childrens Hospital. I really like it there. We actually talked to the dietician yesterday and she is going to try get the ins to cover Boost for him. She said she knows how to work with the ins through their pharmacy so she is sure she can do it through the other. But it might take a while she said.

I have really never had any problems there with Dayton. But Austin was originally taken to Cincinnati Childrens when he was diagnosed. He has Arnold Chiarai Malformation with shunted hydrocephalus. So he has a shunt in his head also.

We chose Dayton because it was closer for us. I hope you can get some answers soon and Graycie will be able to come home soon.

 

[pnhuffman]

When Austin was diagnosed he was 7 months old but he only stayed for like 2 weeks. He currently attends Dayton Childrens Hospital. I really like it there. We actually talked to the dietician yesterday and she is going to try get the ins to cover Boost for him. She said she knows how to work with the ins through their pharmacy so she is sure she can do it through the other. But it might take a while she said.

I have really never had any problems there with Dayton. But Austin was originally taken to Cincinnati Childrens when he was diagnosed. He has Arnold Chiarai Malformation with shunted hydrocephalus. So he has a shunt in his head also.

We chose Dayton because it was closer for us. I hope you can get some answers soon and Graycie will be able to come home soon.

 

[pnhuffman]

When Austin was diagnosed he was 7 months old but he only stayed for like 2 weeks. He currently attends Dayton Childrens Hospital. I really like it there. We actually talked to the dietician yesterday and she is going to try get the ins to cover Boost for him. She said she knows how to work with the ins through their pharmacy so she is sure she can do it through the other. But it might take a while she said.

I have really never had any problems there with Dayton. But Austin was originally taken to Cincinnati Childrens when he was diagnosed. He has Arnold Chiarai Malformation with shunted hydrocephalus. So he has a shunt in his head also.

We chose Dayton because it was closer for us. I hope you can get some answers soon and Graycie will be able to come home soon.

 

[pnhuffman]

When Austin was diagnosed he was 7 months old but he only stayed for like 2 weeks. He currently attends Dayton Childrens Hospital. I really like it there. We actually talked to the dietician yesterday and she is going to try get the ins to cover Boost for him. She said she knows how to work with the ins through their pharmacy so she is sure she can do it through the other. But it might take a while she said.

I have really never had any problems there with Dayton. But Austin was originally taken to Cincinnati Childrens when he was diagnosed. He has Arnold Chiarai Malformation with shunted hydrocephalus. So he has a shunt in his head also.

We chose Dayton because it was closer for us. I hope you can get some answers soon and Graycie will be able to come home soon.

 

[pnhuffman]

When Austin was diagnosed he was 7 months old but he only stayed for like 2 weeks. He currently attends Dayton Childrens Hospital. I really like it there. We actually talked to the dietician yesterday and she is going to try get the ins to cover Boost for him. She said she knows how to work with the ins through their pharmacy so she is sure she can do it through the other. But it might take a while she said.
<br />
<br />I have really never had any problems there with Dayton. But Austin was originally taken to Cincinnati Childrens when he was diagnosed. He has Arnold Chiarai Malformation with shunted hydrocephalus. So he has a shunt in his head also.
<br />
<br />We chose Dayton because it was closer for us. I hope you can get some answers soon and Graycie will be able to come home soon.

 

[sdelorenzo]

I have had to change my children's drs, get second opinions at other cf clinics and move my child to a new hospital during a stay. It was all well worth it. It does seem pretty common to have your granddaughter's issues. You really want her off tpn as soon as possible in order to keep from damaging her liver. I wouldn't hesitate to move her to get new ideas and hopefully some help in getting her to gain weight and go home. Five months is the longest I have heard about from mi.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

 

[sdelorenzo]

I have had to change my children's drs, get second opinions at other cf clinics and move my child to a new hospital during a stay. It was all well worth it. It does seem pretty common to have your granddaughter's issues. You really want her off tpn as soon as possible in order to keep from damaging her liver. I wouldn't hesitate to move her to get new ideas and hopefully some help in getting her to gain weight and go home. Five months is the longest I have heard about from mi.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

 

[sdelorenzo]

I have had to change my children's drs, get second opinions at other cf clinics and move my child to a new hospital during a stay. It was all well worth it. It does seem pretty common to have your granddaughter's issues. You really want her off tpn as soon as possible in order to keep from damaging her liver. I wouldn't hesitate to move her to get new ideas and hopefully some help in getting her to gain weight and go home. Five months is the longest I have heard about from mi.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

 

[sdelorenzo]

I have had to change my children's drs, get second opinions at other cf clinics and move my child to a new hospital during a stay. It was all well worth it. It does seem pretty common to have your granddaughter's issues. You really want her off tpn as soon as possible in order to keep from damaging her liver. I wouldn't hesitate to move her to get new ideas and hopefully some help in getting her to gain weight and go home. Five months is the longest I have heard about from mi.
Sharon, mom of Sophia, 7 and Jack, 5 both with cf

 

[sdelorenzo]

I have had to change my children's drs, get second opinions at other cf clinics and move my child to a new hospital during a stay. It was all well worth it. It does seem pretty common to have your granddaughter's issues. You really want her off tpn as soon as possible in order to keep from damaging her liver. I wouldn't hesitate to move her to get new ideas and hopefully some help in getting her to gain weight and go home. Five months is the longest I have heard about from mi.
<br />Sharon, mom of Sophia, 7 and Jack, 5 both with cf

 

[Mommafirst]

I don't have much input, but I wanted to say that Cincinatti's hospital has the best nutrition team in all Ohio. We are in Akron, but my docs and nutritionist have considered sending us there for some additional input.

I think you are very smart to be considering this possibility. 5 months is an awful long stay.

 

[Mommafirst]

I don't have much input, but I wanted to say that Cincinatti's hospital has the best nutrition team in all Ohio. We are in Akron, but my docs and nutritionist have considered sending us there for some additional input.

I think you are very smart to be considering this possibility. 5 months is an awful long stay.

 

[Mommafirst]

I don't have much input, but I wanted to say that Cincinatti's hospital has the best nutrition team in all Ohio. We are in Akron, but my docs and nutritionist have considered sending us there for some additional input.

I think you are very smart to be considering this possibility. 5 months is an awful long stay.

 

[Mommafirst]

I don't have much input, but I wanted to say that Cincinatti's hospital has the best nutrition team in all Ohio. We are in Akron, but my docs and nutritionist have considered sending us there for some additional input.

I think you are very smart to be considering this possibility. 5 months is an awful long stay.

 

[Mommafirst]

I don't have much input, but I wanted to say that Cincinatti's hospital has the best nutrition team in all Ohio. We are in Akron, but my docs and nutritionist have considered sending us there for some additional input.
<br />
<br />I think you are very smart to be considering this possibility. 5 months is an awful long stay.

 

[Transplantmommy]

Grayson doesn't look so underweight to me in that pic up there! I am sure that the diarrhea is normal for a CFer.

I had MI when I was born and had surgery for it (I don't think they removed any of my bowels though) and I was home in 2 weeks (and this was in 1981 mind you). My Mom has told me plenty of times that she changed my diapers like 12 times a day due to diarrhea. I really don't think it's uncommon. I really think that you and your family should have her transferred and get another opinion. That seems awful long to be in the hospital....she has never come home? Has she had any trouble other then the diarrhea? Sorry, this seems unbelievable to me that they would keep her in for that long for something that seems so simple for a CFer.

I had my colon removed in June 2007 and was only in for a few days after. I had a colostomy bag for 9 months and when it was finally removed (in March this year) I constantly had diarrhea because so much of my intestine (my whole colon) was gone. Here I am almost 7 months later and I still have diarrhea. I know that it's probably worse for a baby to have diarrhea constantly but I did when I was little and the doctors thought nothing of it and here I am today.

My longest hospital stay was 63 days. That is when I had major issues with lung infections and I was waiting for the transplants. I was sent home when we weren't getting any offers and I then waited at home with frequent home IV's.

I'm sorry that I have rambled a little bit but I really think that a 2nd opinion is needed in her case. My little Brady (no CF) came home skinnier than Graycie. Sorry for the rant, but I hope that I have helped at least a little.

 

[Transplantmommy]

Grayson doesn't look so underweight to me in that pic up there! I am sure that the diarrhea is normal for a CFer.

I had MI when I was born and had surgery for it (I don't think they removed any of my bowels though) and I was home in 2 weeks (and this was in 1981 mind you). My Mom has told me plenty of times that she changed my diapers like 12 times a day due to diarrhea. I really don't think it's uncommon. I really think that you and your family should have her transferred and get another opinion. That seems awful long to be in the hospital....she has never come home? Has she had any trouble other then the diarrhea? Sorry, this seems unbelievable to me that they would keep her in for that long for something that seems so simple for a CFer.

I had my colon removed in June 2007 and was only in for a few days after. I had a colostomy bag for 9 months and when it was finally removed (in March this year) I constantly had diarrhea because so much of my intestine (my whole colon) was gone. Here I am almost 7 months later and I still have diarrhea. I know that it's probably worse for a baby to have diarrhea constantly but I did when I was little and the doctors thought nothing of it and here I am today.

My longest hospital stay was 63 days. That is when I had major issues with lung infections and I was waiting for the transplants. I was sent home when we weren't getting any offers and I then waited at home with frequent home IV's.

I'm sorry that I have rambled a little bit but I really think that a 2nd opinion is needed in her case. My little Brady (no CF) came home skinnier than Graycie. Sorry for the rant, but I hope that I have helped at least a little.

 

[Transplantmommy]

Grayson doesn't look so underweight to me in that pic up there! I am sure that the diarrhea is normal for a CFer.

I had MI when I was born and had surgery for it (I don't think they removed any of my bowels though) and I was home in 2 weeks (and this was in 1981 mind you). My Mom has told me plenty of times that she changed my diapers like 12 times a day due to diarrhea. I really don't think it's uncommon. I really think that you and your family should have her transferred and get another opinion. That seems awful long to be in the hospital....she has never come home? Has she had any trouble other then the diarrhea? Sorry, this seems unbelievable to me that they would keep her in for that long for something that seems so simple for a CFer.

I had my colon removed in June 2007 and was only in for a few days after. I had a colostomy bag for 9 months and when it was finally removed (in March this year) I constantly had diarrhea because so much of my intestine (my whole colon) was gone. Here I am almost 7 months later and I still have diarrhea. I know that it's probably worse for a baby to have diarrhea constantly but I did when I was little and the doctors thought nothing of it and here I am today.

My longest hospital stay was 63 days. That is when I had major issues with lung infections and I was waiting for the transplants. I was sent home when we weren't getting any offers and I then waited at home with frequent home IV's.

I'm sorry that I have rambled a little bit but I really think that a 2nd opinion is needed in her case. My little Brady (no CF) came home skinnier than Graycie. Sorry for the rant, but I hope that I have helped at least a little.

 

[Transplantmommy]

Grayson doesn't look so underweight to me in that pic up there! I am sure that the diarrhea is normal for a CFer.

I had MI when I was born and had surgery for it (I don't think they removed any of my bowels though) and I was home in 2 weeks (and this was in 1981 mind you). My Mom has told me plenty of times that she changed my diapers like 12 times a day due to diarrhea. I really don't think it's uncommon. I really think that you and your family should have her transferred and get another opinion. That seems awful long to be in the hospital....she has never come home? Has she had any trouble other then the diarrhea? Sorry, this seems unbelievable to me that they would keep her in for that long for something that seems so simple for a CFer.

I had my colon removed in June 2007 and was only in for a few days after. I had a colostomy bag for 9 months and when it was finally removed (in March this year) I constantly had diarrhea because so much of my intestine (my whole colon) was gone. Here I am almost 7 months later and I still have diarrhea. I know that it's probably worse for a baby to have diarrhea constantly but I did when I was little and the doctors thought nothing of it and here I am today.

My longest hospital stay was 63 days. That is when I had major issues with lung infections and I was waiting for the transplants. I was sent home when we weren't getting any offers and I then waited at home with frequent home IV's.

I'm sorry that I have rambled a little bit but I really think that a 2nd opinion is needed in her case. My little Brady (no CF) came home skinnier than Graycie. Sorry for the rant, but I hope that I have helped at least a little.

 

[Transplantmommy]

Grayson doesn't look so underweight to me in that pic up there! I am sure that the diarrhea is normal for a CFer.
<br />
<br />I had MI when I was born and had surgery for it (I don't think they removed any of my bowels though) and I was home in 2 weeks (and this was in 1981 mind you). My Mom has told me plenty of times that she changed my diapers like 12 times a day due to diarrhea. I really don't think it's uncommon. I really think that you and your family should have her transferred and get another opinion. That seems awful long to be in the hospital....she has never come home? Has she had any trouble other then the diarrhea? Sorry, this seems unbelievable to me that they would keep her in for that long for something that seems so simple for a CFer.
<br />
<br />I had my colon removed in June 2007 and was only in for a few days after. I had a colostomy bag for 9 months and when it was finally removed (in March this year) I constantly had diarrhea because so much of my intestine (my whole colon) was gone. Here I am almost 7 months later and I still have diarrhea. I know that it's probably worse for a baby to have diarrhea constantly but I did when I was little and the doctors thought nothing of it and here I am today.
<br />
<br />My longest hospital stay was 63 days. That is when I had major issues with lung infections and I was waiting for the transplants. I was sent home when we weren't getting any offers and I then waited at home with frequent home IV's.
<br />
<br />I'm sorry that I have rambled a little bit but I really think that a 2nd opinion is needed in her case. My little Brady (no CF) came home skinnier than Graycie. Sorry for the rant, but I hope that I have helped at least a little.