Should we move her to another CF hospital

F

fourkidsmom

New member
Nana,

My son goes to Toledo Childrens Hospital, in Toledo, Ohio. We are only about 1 1/2 hours from Dayton Childrens in Datyon, Ohio but preferred to go to Toledo. (which is 2 hours away)We knew my son would have to stay in the hospital for some time after birth and it was the only hospital around that allowed me and my son to be in the same hospital. (I had a c-section with him because of his burst bowel- from his bowel blockage) He was in for 77 days straight. It is so hard. I don't know Columbus, hospital but I am sure they are trying their best. I know it is frustrating and if you move now you will feel like the hospital you move to would not know your little Graycie and all she has already been through. My son had a stoma bag and illiostomy for the first 2 months and wasn't thriving so they reconnected his bowels. He does seem to get blockages easily and can't handle popcorn, peanuts, corn of any sort. Something to keep in mind when your granddaughter gets a little older. When they put his bowel together they still weren't the same size, one side was MUCh smaller than the other, I wonder if that caused some problems with why het gets so many obstructions. I would go with your heart- I don't know where in Ohio you live, but Toledo is a great hospital.

Fourkidsmom
 
F

fourkidsmom

New member
Nana,

My son goes to Toledo Childrens Hospital, in Toledo, Ohio. We are only about 1 1/2 hours from Dayton Childrens in Datyon, Ohio but preferred to go to Toledo. (which is 2 hours away)We knew my son would have to stay in the hospital for some time after birth and it was the only hospital around that allowed me and my son to be in the same hospital. (I had a c-section with him because of his burst bowel- from his bowel blockage) He was in for 77 days straight. It is so hard. I don't know Columbus, hospital but I am sure they are trying their best. I know it is frustrating and if you move now you will feel like the hospital you move to would not know your little Graycie and all she has already been through. My son had a stoma bag and illiostomy for the first 2 months and wasn't thriving so they reconnected his bowels. He does seem to get blockages easily and can't handle popcorn, peanuts, corn of any sort. Something to keep in mind when your granddaughter gets a little older. When they put his bowel together they still weren't the same size, one side was MUCh smaller than the other, I wonder if that caused some problems with why het gets so many obstructions. I would go with your heart- I don't know where in Ohio you live, but Toledo is a great hospital.

Fourkidsmom
 
F

fourkidsmom

New member
Nana,

My son goes to Toledo Childrens Hospital, in Toledo, Ohio. We are only about 1 1/2 hours from Dayton Childrens in Datyon, Ohio but preferred to go to Toledo. (which is 2 hours away)We knew my son would have to stay in the hospital for some time after birth and it was the only hospital around that allowed me and my son to be in the same hospital. (I had a c-section with him because of his burst bowel- from his bowel blockage) He was in for 77 days straight. It is so hard. I don't know Columbus, hospital but I am sure they are trying their best. I know it is frustrating and if you move now you will feel like the hospital you move to would not know your little Graycie and all she has already been through. My son had a stoma bag and illiostomy for the first 2 months and wasn't thriving so they reconnected his bowels. He does seem to get blockages easily and can't handle popcorn, peanuts, corn of any sort. Something to keep in mind when your granddaughter gets a little older. When they put his bowel together they still weren't the same size, one side was MUCh smaller than the other, I wonder if that caused some problems with why het gets so many obstructions. I would go with your heart- I don't know where in Ohio you live, but Toledo is a great hospital.

Fourkidsmom
 
F

fourkidsmom

New member
Nana,

My son goes to Toledo Childrens Hospital, in Toledo, Ohio. We are only about 1 1/2 hours from Dayton Childrens in Datyon, Ohio but preferred to go to Toledo. (which is 2 hours away)We knew my son would have to stay in the hospital for some time after birth and it was the only hospital around that allowed me and my son to be in the same hospital. (I had a c-section with him because of his burst bowel- from his bowel blockage) He was in for 77 days straight. It is so hard. I don't know Columbus, hospital but I am sure they are trying their best. I know it is frustrating and if you move now you will feel like the hospital you move to would not know your little Graycie and all she has already been through. My son had a stoma bag and illiostomy for the first 2 months and wasn't thriving so they reconnected his bowels. He does seem to get blockages easily and can't handle popcorn, peanuts, corn of any sort. Something to keep in mind when your granddaughter gets a little older. When they put his bowel together they still weren't the same size, one side was MUCh smaller than the other, I wonder if that caused some problems with why het gets so many obstructions. I would go with your heart- I don't know where in Ohio you live, but Toledo is a great hospital.

Fourkidsmom
 
F

fourkidsmom

New member
Nana,
<br />
<br />My son goes to Toledo Childrens Hospital, in Toledo, Ohio. We are only about 1 1/2 hours from Dayton Childrens in Datyon, Ohio but preferred to go to Toledo. (which is 2 hours away)We knew my son would have to stay in the hospital for some time after birth and it was the only hospital around that allowed me and my son to be in the same hospital. (I had a c-section with him because of his burst bowel- from his bowel blockage) He was in for 77 days straight. It is so hard. I don't know Columbus, hospital but I am sure they are trying their best. I know it is frustrating and if you move now you will feel like the hospital you move to would not know your little Graycie and all she has already been through. My son had a stoma bag and illiostomy for the first 2 months and wasn't thriving so they reconnected his bowels. He does seem to get blockages easily and can't handle popcorn, peanuts, corn of any sort. Something to keep in mind when your granddaughter gets a little older. When they put his bowel together they still weren't the same size, one side was MUCh smaller than the other, I wonder if that caused some problems with why het gets so many obstructions. I would go with your heart- I don't know where in Ohio you live, but Toledo is a great hospital.
<br />
<br />Fourkidsmom
<br />
<br />
 
B

Buckeye

New member
You have every right to get a second opinion if you feel that would help. At the very least it would put your mind at ease that they are on the right track. Personally I would get the 2nd opinion through The Cleveland Clinic. It's one of the top hospitals in the country and within two hours of you, I would take advantage of it. I can PM you the name and phone number of my son's GI doctor there if you need it.
 
B

Buckeye

New member
You have every right to get a second opinion if you feel that would help. At the very least it would put your mind at ease that they are on the right track. Personally I would get the 2nd opinion through The Cleveland Clinic. It's one of the top hospitals in the country and within two hours of you, I would take advantage of it. I can PM you the name and phone number of my son's GI doctor there if you need it.
 
B

Buckeye

New member
You have every right to get a second opinion if you feel that would help. At the very least it would put your mind at ease that they are on the right track. Personally I would get the 2nd opinion through The Cleveland Clinic. It's one of the top hospitals in the country and within two hours of you, I would take advantage of it. I can PM you the name and phone number of my son's GI doctor there if you need it.
 
B

Buckeye

New member
You have every right to get a second opinion if you feel that would help. At the very least it would put your mind at ease that they are on the right track. Personally I would get the 2nd opinion through The Cleveland Clinic. It's one of the top hospitals in the country and within two hours of you, I would take advantage of it. I can PM you the name and phone number of my son's GI doctor there if you need it.
 
B

Buckeye

New member
You have every right to get a second opinion if you feel that would help. At the very least it would put your mind at ease that they are on the right track. Personally I would get the 2nd opinion through The Cleveland Clinic. It's one of the top hospitals in the country and within two hours of you, I would take advantage of it. I can PM you the name and phone number of my son's GI doctor there if you need it.
 
K

kperkins6

New member
Hi - I don't have any experience with this situation, but I am familiar with a little boy (not with CF - a micropreemie) who was born 2 years ago, developed an infection of the bowel and had to a have a large portion of it removed, resulting in something called short bowel syndrome. He was in the hospital for an extreme amount of time and his mother, a nutritionist, may be familiar with techniques to help Gracie begin to gain weight. Their blog is here - <a target=_blank class=ftalternatingbarlinklarge href="http://elijah-joseph.blogspot.com/">http://elijah-joseph.blogspot.com/</a>... again, her son has an extreme case and doesn't have CF, but maybe it will be a resource for better understanding why Gracie is different from another CF child with only meconium illeus... hth
 
K

kperkins6

New member
Hi - I don't have any experience with this situation, but I am familiar with a little boy (not with CF - a micropreemie) who was born 2 years ago, developed an infection of the bowel and had to a have a large portion of it removed, resulting in something called short bowel syndrome. He was in the hospital for an extreme amount of time and his mother, a nutritionist, may be familiar with techniques to help Gracie begin to gain weight. Their blog is here - <a target=_blank class=ftalternatingbarlinklarge href="http://elijah-joseph.blogspot.com/">http://elijah-joseph.blogspot.com/</a>... again, her son has an extreme case and doesn't have CF, but maybe it will be a resource for better understanding why Gracie is different from another CF child with only meconium illeus... hth
 
K

kperkins6

New member
Hi - I don't have any experience with this situation, but I am familiar with a little boy (not with CF - a micropreemie) who was born 2 years ago, developed an infection of the bowel and had to a have a large portion of it removed, resulting in something called short bowel syndrome. He was in the hospital for an extreme amount of time and his mother, a nutritionist, may be familiar with techniques to help Gracie begin to gain weight. Their blog is here - <a target=_blank class=ftalternatingbarlinklarge href="http://elijah-joseph.blogspot.com/">http://elijah-joseph.blogspot.com/</a>... again, her son has an extreme case and doesn't have CF, but maybe it will be a resource for better understanding why Gracie is different from another CF child with only meconium illeus... hth
 
K

kperkins6

New member
Hi - I don't have any experience with this situation, but I am familiar with a little boy (not with CF - a micropreemie) who was born 2 years ago, developed an infection of the bowel and had to a have a large portion of it removed, resulting in something called short bowel syndrome. He was in the hospital for an extreme amount of time and his mother, a nutritionist, may be familiar with techniques to help Gracie begin to gain weight. Their blog is here - <a target=_blank class=ftalternatingbarlinklarge href="http://elijah-joseph.blogspot.com/">http://elijah-joseph.blogspot.com/</a>... again, her son has an extreme case and doesn't have CF, but maybe it will be a resource for better understanding why Gracie is different from another CF child with only meconium illeus... hth
 
K

kperkins6

New member
Hi - I don't have any experience with this situation, but I am familiar with a little boy (not with CF - a micropreemie) who was born 2 years ago, developed an infection of the bowel and had to a have a large portion of it removed, resulting in something called short bowel syndrome. He was in the hospital for an extreme amount of time and his mother, a nutritionist, may be familiar with techniques to help Gracie begin to gain weight. Their blog is here - <a target=_blank class=ftalternatingbarlinklarge href="http://elijah-joseph.blogspot.com/">http://elijah-joseph.blogspot.com/</a>... again, her son has an extreme case and doesn't have CF, but maybe it will be a resource for better understanding why Gracie is different from another CF child with only meconium illeus... hth
 
S

Stacia

Guest
Stacia was born with the MI too. They did surgery on her when she was five hours old. We were in the hospital for almost four months. The took ten inches of her bowel out. We were due to come home sooner but we got an infection and had to stay longer. They also had to go in and hook her bowel up twice. The first time it didn't work right so they had to go back in again. We were at Akron Childrens hospital. (North of ya) That is where we go to CF Clinic still. We love it there. Stacia never had a G tube she seemed to gain weight ok until later. She is ten years old and weighs only 50 pounds now.
 
S

Stacia

Guest
Stacia was born with the MI too. They did surgery on her when she was five hours old. We were in the hospital for almost four months. The took ten inches of her bowel out. We were due to come home sooner but we got an infection and had to stay longer. They also had to go in and hook her bowel up twice. The first time it didn't work right so they had to go back in again. We were at Akron Childrens hospital. (North of ya) That is where we go to CF Clinic still. We love it there. Stacia never had a G tube she seemed to gain weight ok until later. She is ten years old and weighs only 50 pounds now.
 
S

Stacia

Guest
Stacia was born with the MI too. They did surgery on her when she was five hours old. We were in the hospital for almost four months. The took ten inches of her bowel out. We were due to come home sooner but we got an infection and had to stay longer. They also had to go in and hook her bowel up twice. The first time it didn't work right so they had to go back in again. We were at Akron Childrens hospital. (North of ya) That is where we go to CF Clinic still. We love it there. Stacia never had a G tube she seemed to gain weight ok until later. She is ten years old and weighs only 50 pounds now.
 
S

Stacia

Guest
Stacia was born with the MI too. They did surgery on her when she was five hours old. We were in the hospital for almost four months. The took ten inches of her bowel out. We were due to come home sooner but we got an infection and had to stay longer. They also had to go in and hook her bowel up twice. The first time it didn't work right so they had to go back in again. We were at Akron Childrens hospital. (North of ya) That is where we go to CF Clinic still. We love it there. Stacia never had a G tube she seemed to gain weight ok until later. She is ten years old and weighs only 50 pounds now.
 
S

Stacia

Guest
Stacia was born with the MI too. They did surgery on her when she was five hours old. We were in the hospital for almost four months. The took ten inches of her bowel out. We were due to come home sooner but we got an infection and had to stay longer. They also had to go in and hook her bowel up twice. The first time it didn't work right so they had to go back in again. We were at Akron Childrens hospital. (North of ya) That is where we go to CF Clinic still. We love it there. Stacia never had a G tube she seemed to gain weight ok until later. She is ten years old and weighs only 50 pounds now.
 
You must log in or register to reply here.
Top