Should we move her to another CF hospital

NanaOf8Girls · Sep 30, 2008

So its going on 5 months now for Graycie to be in the hospital. The GI doctors and everyone else are telling us that Grayson is a rare case because she had MI at birth and they had to remove 7-8 inches of her bowel. She is still having trouble gaining weight and whenever they try to increase her feeds thur the G tube she gets diarria and then they have to stop and put her on IV. She is also on TPN. I don't believe that she is that rare from what i have read here on this forum. She is currently at Nationwide Childrens Hospital in Columbus OH. I researched this hospital and they scored lower than national average on nutriention. The Dayton Hospital here in Oh scores above average and we are thinking of having her transferred there. I was wondering how long was the longest stay anyone has had in the hospital. And do you think we have given them enough time with Graycie and should we move her. I have lost all confidence in this hospital and their staff. I am worried that they do not have the knowledge to help Grayson come home.

NanaOf8Girls · Sep 30, 2008

So its going on 5 months now for Graycie to be in the hospital. The GI doctors and everyone else are telling us that Grayson is a rare case because she had MI at birth and they had to remove 7-8 inches of her bowel. She is still having trouble gaining weight and whenever they try to increase her feeds thur the G tube she gets diarria and then they have to stop and put her on IV. She is also on TPN. I don't believe that she is that rare from what i have read here on this forum. She is currently at Nationwide Childrens Hospital in Columbus OH. I researched this hospital and they scored lower than national average on nutriention. The Dayton Hospital here in Oh scores above average and we are thinking of having her transferred there. I was wondering how long was the longest stay anyone has had in the hospital. And do you think we have given them enough time with Graycie and should we move her. I have lost all confidence in this hospital and their staff. I am worried that they do not have the knowledge to help Grayson come home.

NanaOf8Girls · Sep 30, 2008

So its going on 5 months now for Graycie to be in the hospital. The GI doctors and everyone else are telling us that Grayson is a rare case because she had MI at birth and they had to remove 7-8 inches of her bowel. She is still having trouble gaining weight and whenever they try to increase her feeds thur the G tube she gets diarria and then they have to stop and put her on IV. She is also on TPN. I don't believe that she is that rare from what i have read here on this forum. She is currently at Nationwide Childrens Hospital in Columbus OH. I researched this hospital and they scored lower than national average on nutriention. The Dayton Hospital here in Oh scores above average and we are thinking of having her transferred there. I was wondering how long was the longest stay anyone has had in the hospital. And do you think we have given them enough time with Graycie and should we move her. I have lost all confidence in this hospital and their staff. I am worried that they do not have the knowledge to help Grayson come home.

NanaOf8Girls · Sep 30, 2008

So its going on 5 months now for Graycie to be in the hospital. The GI doctors and everyone else are telling us that Grayson is a rare case because she had MI at birth and they had to remove 7-8 inches of her bowel. She is still having trouble gaining weight and whenever they try to increase her feeds thur the G tube she gets diarria and then they have to stop and put her on IV. She is also on TPN. I don't believe that she is that rare from what i have read here on this forum. She is currently at Nationwide Childrens Hospital in Columbus OH. I researched this hospital and they scored lower than national average on nutriention. The Dayton Hospital here in Oh scores above average and we are thinking of having her transferred there. I was wondering how long was the longest stay anyone has had in the hospital. And do you think we have given them enough time with Graycie and should we move her. I have lost all confidence in this hospital and their staff. I am worried that they do not have the knowledge to help Grayson come home.

NanaOf8Girls · Sep 30, 2008

So its going on 5 months now for Graycie to be in the hospital. The GI doctors and everyone else are telling us that Grayson is a rare case because she had MI at birth and they had to remove 7-8 inches of her bowel. She is still having trouble gaining weight and whenever they try to increase her feeds thur the G tube she gets diarria and then they have to stop and put her on IV. She is also on TPN. I don't believe that she is that rare from what i have read here on this forum. She is currently at Nationwide Childrens Hospital in Columbus OH. I researched this hospital and they scored lower than national average on nutriention. The Dayton Hospital here in Oh scores above average and we are thinking of having her transferred there. I was wondering how long was the longest stay anyone has had in the hospital. And do you think we have given them enough time with Graycie and should we move her. I have lost all confidence in this hospital and their staff. I am worried that they do not have the knowledge to help Grayson come home.

JazzysMom · Sep 30, 2008

I dont have any input really, but I am glad that you are really asking & doing research to get the best care for her!

JazzysMom · Sep 30, 2008

I dont have any input really, but I am glad that you are really asking & doing research to get the best care for her!

JazzysMom · Sep 30, 2008

I dont have any input really, but I am glad that you are really asking & doing research to get the best care for her!

JazzysMom · Sep 30, 2008

I dont have any input really, but I am glad that you are really asking & doing research to get the best care for her!

JazzysMom · Sep 30, 2008

I dont have any input really, but I am glad that you are really asking & doing research to get the best care for her!
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folione · Sep 30, 2008

My son's stays have been short so I'm no help there - but have you thought of trying to get a second opinion somehow from the CF clinic at the other hospital or from a pediatrician affiliated with either of the hopsitals?

folione · Sep 30, 2008

My son's stays have been short so I'm no help there - but have you thought of trying to get a second opinion somehow from the CF clinic at the other hospital or from a pediatrician affiliated with either of the hopsitals?

folione · Sep 30, 2008

My son's stays have been short so I'm no help there - but have you thought of trying to get a second opinion somehow from the CF clinic at the other hospital or from a pediatrician affiliated with either of the hopsitals?

folione · Sep 30, 2008

My son's stays have been short so I'm no help there - but have you thought of trying to get a second opinion somehow from the CF clinic at the other hospital or from a pediatrician affiliated with either of the hopsitals?

folione · Sep 30, 2008

My son's stays have been short so I'm no help there - but have you thought of trying to get a second opinion somehow from the CF clinic at the other hospital or from a pediatrician affiliated with either of the hopsitals?

Ratatosk · Sep 30, 2008