Should we move her to another CF hospital

J

just1more

New member
As for moving, if you are not comfortable with the care/information you are getting then move. Don't do it due to any 'ranking' per se as they are not necessarily 100%, but if you feel like you should move do so.

As for stays, our son had a case very close to your little one in the beginning and was in the hosptial for ~3 months. I know of a couple others with MI where this was about the 'norm'. Since then he has been in several times, the longest was that first time, after that would be his other bowel resection and he was in for 39 days.

Most of the others were 5-10 days for IV meds.
 
J

just1more

New member
As for moving, if you are not comfortable with the care/information you are getting then move. Don't do it due to any 'ranking' per se as they are not necessarily 100%, but if you feel like you should move do so.

As for stays, our son had a case very close to your little one in the beginning and was in the hosptial for ~3 months. I know of a couple others with MI where this was about the 'norm'. Since then he has been in several times, the longest was that first time, after that would be his other bowel resection and he was in for 39 days.

Most of the others were 5-10 days for IV meds.
 
J

just1more

New member
As for moving, if you are not comfortable with the care/information you are getting then move. Don't do it due to any 'ranking' per se as they are not necessarily 100%, but if you feel like you should move do so.

As for stays, our son had a case very close to your little one in the beginning and was in the hosptial for ~3 months. I know of a couple others with MI where this was about the 'norm'. Since then he has been in several times, the longest was that first time, after that would be his other bowel resection and he was in for 39 days.

Most of the others were 5-10 days for IV meds.
 
J

just1more

New member
As for moving, if you are not comfortable with the care/information you are getting then move. Don't do it due to any 'ranking' per se as they are not necessarily 100%, but if you feel like you should move do so.

As for stays, our son had a case very close to your little one in the beginning and was in the hosptial for ~3 months. I know of a couple others with MI where this was about the 'norm'. Since then he has been in several times, the longest was that first time, after that would be his other bowel resection and he was in for 39 days.

Most of the others were 5-10 days for IV meds.
 
J

just1more

New member
As for moving, if you are not comfortable with the care/information you are getting then move. Don't do it due to any 'ranking' per se as they are not necessarily 100%, but if you feel like you should move do so.
<br />
<br />As for stays, our son had a case very close to your little one in the beginning and was in the hosptial for ~3 months. I know of a couple others with MI where this was about the 'norm'. Since then he has been in several times, the longest was that first time, after that would be his other bowel resection and he was in for 39 days.
<br />
<br />Most of the others were 5-10 days for IV meds.
 
N

NanaOf8Girls

New member
No Graycie has never been home since her birth. And she does look bigger in the pix because she has these huge apple cheeks. However she is 11lbs 8oz and at 5 months she is underweight. She was born with MI and did have some issues after birth, infections, MRSA, diarria, dumping. They have tried many different formula'a and she just got her G Tube on the 17th. Everytime they try to increase her feeds something happens to set them back. We are calling Dayton for a second oppinion. I have NEVER, EVER heard of anyone else staying for this length of time and now i have had it
 
N

NanaOf8Girls

New member
No Graycie has never been home since her birth. And she does look bigger in the pix because she has these huge apple cheeks. However she is 11lbs 8oz and at 5 months she is underweight. She was born with MI and did have some issues after birth, infections, MRSA, diarria, dumping. They have tried many different formula'a and she just got her G Tube on the 17th. Everytime they try to increase her feeds something happens to set them back. We are calling Dayton for a second oppinion. I have NEVER, EVER heard of anyone else staying for this length of time and now i have had it
 
N

NanaOf8Girls

New member
No Graycie has never been home since her birth. And she does look bigger in the pix because she has these huge apple cheeks. However she is 11lbs 8oz and at 5 months she is underweight. She was born with MI and did have some issues after birth, infections, MRSA, diarria, dumping. They have tried many different formula'a and she just got her G Tube on the 17th. Everytime they try to increase her feeds something happens to set them back. We are calling Dayton for a second oppinion. I have NEVER, EVER heard of anyone else staying for this length of time and now i have had it
 
N

NanaOf8Girls

New member
No Graycie has never been home since her birth. And she does look bigger in the pix because she has these huge apple cheeks. However she is 11lbs 8oz and at 5 months she is underweight. She was born with MI and did have some issues after birth, infections, MRSA, diarria, dumping. They have tried many different formula'a and she just got her G Tube on the 17th. Everytime they try to increase her feeds something happens to set them back. We are calling Dayton for a second oppinion. I have NEVER, EVER heard of anyone else staying for this length of time and now i have had it
 
N

NanaOf8Girls

New member
No Graycie has never been home since her birth. And she does look bigger in the pix because she has these huge apple cheeks. However she is 11lbs 8oz and at 5 months she is underweight. She was born with MI and did have some issues after birth, infections, MRSA, diarria, dumping. They have tried many different formula'a and she just got her G Tube on the 17th. Everytime they try to increase her feeds something happens to set them back. We are calling Dayton for a second oppinion. I have NEVER, EVER heard of anyone else staying for this length of time and now i have had it
 
S

SARAHSARAH253

New member
My son was in the hospital for 40 days, however I remember the surgeon saying they only had to remove a small portion of of his small intestines....There was another baby there that had been in for six months...Due to having a much larger portion of it's bowels removed, and not taking feeds. (Not sure if that baby had cf though)...We weren't talking about CF....Sweet test came back the day we left the hospital.....So I'm no expert and I could be wrong but maybe it's because they had to remove so much bowel..It's just taking extra time....I'm soooooo sorry....I know how much your family wants her home....I'll say a big prayer tonight...

Love,

Sarah
 
S

SARAHSARAH253

New member
My son was in the hospital for 40 days, however I remember the surgeon saying they only had to remove a small portion of of his small intestines....There was another baby there that had been in for six months...Due to having a much larger portion of it's bowels removed, and not taking feeds. (Not sure if that baby had cf though)...We weren't talking about CF....Sweet test came back the day we left the hospital.....So I'm no expert and I could be wrong but maybe it's because they had to remove so much bowel..It's just taking extra time....I'm soooooo sorry....I know how much your family wants her home....I'll say a big prayer tonight...

Love,

Sarah
 
S

SARAHSARAH253

New member
My son was in the hospital for 40 days, however I remember the surgeon saying they only had to remove a small portion of of his small intestines....There was another baby there that had been in for six months...Due to having a much larger portion of it's bowels removed, and not taking feeds. (Not sure if that baby had cf though)...We weren't talking about CF....Sweet test came back the day we left the hospital.....So I'm no expert and I could be wrong but maybe it's because they had to remove so much bowel..It's just taking extra time....I'm soooooo sorry....I know how much your family wants her home....I'll say a big prayer tonight...

Love,

Sarah
 
S

SARAHSARAH253

New member
My son was in the hospital for 40 days, however I remember the surgeon saying they only had to remove a small portion of of his small intestines....There was another baby there that had been in for six months...Due to having a much larger portion of it's bowels removed, and not taking feeds. (Not sure if that baby had cf though)...We weren't talking about CF....Sweet test came back the day we left the hospital.....So I'm no expert and I could be wrong but maybe it's because they had to remove so much bowel..It's just taking extra time....I'm soooooo sorry....I know how much your family wants her home....I'll say a big prayer tonight...

Love,

Sarah
 
S

SARAHSARAH253

New member
My son was in the hospital for 40 days, however I remember the surgeon saying they only had to remove a small portion of of his small intestines....There was another baby there that had been in for six months...Due to having a much larger portion of it's bowels removed, and not taking feeds. (Not sure if that baby had cf though)...We weren't talking about CF....Sweet test came back the day we left the hospital.....So I'm no expert and I could be wrong but maybe it's because they had to remove so much bowel..It's just taking extra time....I'm soooooo sorry....I know how much your family wants her home....I'll say a big prayer tonight...
<br />
<br />Love,
<br />
<br />Sarah
 
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