New to CF-need advice!

[jenstem]

Thanks Holly,
It helps to hear from other moms that have gone through the same thing. We stopped feeding because they found another plug. They did another radiation enema yesterday, and got some out, but there is still a plug in there and it is holding the contrast in. They are doing regular enemas today and will do another radiation enema tomorrow to get it to flush. It feels like everytime there is progress, we get pushed back to square one. We are two weeks in to this, hopefully the end is near! Thank you for posting, it means a lot!

Jenny

 

[jenstem]

Thanks Holly,
It helps to hear from other moms that have gone through the same thing. We stopped feeding because they found another plug. They did another radiation enema yesterday, and got some out, but there is still a plug in there and it is holding the contrast in. They are doing regular enemas today and will do another radiation enema tomorrow to get it to flush. It feels like everytime there is progress, we get pushed back to square one. We are two weeks in to this, hopefully the end is near! Thank you for posting, it means a lot!

Jenny

 

[jenstem]

Thanks Holly,
It helps to hear from other moms that have gone through the same thing. We stopped feeding because they found another plug. They did another radiation enema yesterday, and got some out, but there is still a plug in there and it is holding the contrast in. They are doing regular enemas today and will do another radiation enema tomorrow to get it to flush. It feels like everytime there is progress, we get pushed back to square one. We are two weeks in to this, hopefully the end is near! Thank you for posting, it means a lot!

Jenny

 

[jenstem]

Thanks Holly,
It helps to hear from other moms that have gone through the same thing. We stopped feeding because they found another plug. They did another radiation enema yesterday, and got some out, but there is still a plug in there and it is holding the contrast in. They are doing regular enemas today and will do another radiation enema tomorrow to get it to flush. It feels like everytime there is progress, we get pushed back to square one. We are two weeks in to this, hopefully the end is near! Thank you for posting, it means a lot!

Jenny

 

[jenstem]

Thanks Holly,
<br />It helps to hear from other moms that have gone through the same thing. We stopped feeding because they found another plug. They did another radiation enema yesterday, and got some out, but there is still a plug in there and it is holding the contrast in. They are doing regular enemas today and will do another radiation enema tomorrow to get it to flush. It feels like everytime there is progress, we get pushed back to square one. We are two weeks in to this, hopefully the end is near! Thank you for posting, it means a lot!
<br />
<br />Jenny

 

[Ratatosk]

With DS, his surgeon explained to us about timeframes, what could go wrong -- mainly that his system might not be ready at first for feeding, so it could take longer. But we didn't have issues with plugs, I think they pretty much cleaned him out when they repaired the damage.

As terrible as it is, to be waiting and wondering while he's in the hospital, whatever is happening to him isn't happening at home AFTER he'd been released. We were home for one night and DS ended up vomiting (due to an infection) and he spent another two weeks in the local hospital.

Does the surgeon stop by every morning on rounds? Maybe you could think up some specific questions for him, write them down to ask when he comes by again.

 

[Ratatosk]

With DS, his surgeon explained to us about timeframes, what could go wrong -- mainly that his system might not be ready at first for feeding, so it could take longer. But we didn't have issues with plugs, I think they pretty much cleaned him out when they repaired the damage.

As terrible as it is, to be waiting and wondering while he's in the hospital, whatever is happening to him isn't happening at home AFTER he'd been released. We were home for one night and DS ended up vomiting (due to an infection) and he spent another two weeks in the local hospital.

Does the surgeon stop by every morning on rounds? Maybe you could think up some specific questions for him, write them down to ask when he comes by again.

 

[Ratatosk]

With DS, his surgeon explained to us about timeframes, what could go wrong -- mainly that his system might not be ready at first for feeding, so it could take longer. But we didn't have issues with plugs, I think they pretty much cleaned him out when they repaired the damage.

As terrible as it is, to be waiting and wondering while he's in the hospital, whatever is happening to him isn't happening at home AFTER he'd been released. We were home for one night and DS ended up vomiting (due to an infection) and he spent another two weeks in the local hospital.

Does the surgeon stop by every morning on rounds? Maybe you could think up some specific questions for him, write them down to ask when he comes by again.

 

[Ratatosk]

With DS, his surgeon explained to us about timeframes, what could go wrong -- mainly that his system might not be ready at first for feeding, so it could take longer. But we didn't have issues with plugs, I think they pretty much cleaned him out when they repaired the damage.

As terrible as it is, to be waiting and wondering while he's in the hospital, whatever is happening to him isn't happening at home AFTER he'd been released. We were home for one night and DS ended up vomiting (due to an infection) and he spent another two weeks in the local hospital.

Does the surgeon stop by every morning on rounds? Maybe you could think up some specific questions for him, write them down to ask when he comes by again.

 

[Ratatosk]

With DS, his surgeon explained to us about timeframes, what could go wrong -- mainly that his system might not be ready at first for feeding, so it could take longer. But we didn't have issues with plugs, I think they pretty much cleaned him out when they repaired the damage.
<br />
<br />As terrible as it is, to be waiting and wondering while he's in the hospital, whatever is happening to him isn't happening at home AFTER he'd been released. We were home for one night and DS ended up vomiting (due to an infection) and he spent another two weeks in the local hospital.
<br />
<br />Does the surgeon stop by every morning on rounds? Maybe you could think up some specific questions for him, write them down to ask when he comes by again.

 

[DEES4]

Hi! My son had surgery at one day old due to meconium ileus. His intestines had also ruptured and he ended up with a colostomy for about a little over a month. He then had another surgery to reconnect his intestines at 5 weeks old. It was a long scary process. I remember having lots of ups and downs. I know this whole process is so scary but I am sure in the end everything will work out. Before you know it this stay in the NICU will be just a bad memory. But I know when actually going through it, it seems like forever.
Carrie

 

[DEES4]

Hi! My son had surgery at one day old due to meconium ileus. His intestines had also ruptured and he ended up with a colostomy for about a little over a month. He then had another surgery to reconnect his intestines at 5 weeks old. It was a long scary process. I remember having lots of ups and downs. I know this whole process is so scary but I am sure in the end everything will work out. Before you know it this stay in the NICU will be just a bad memory. But I know when actually going through it, it seems like forever.
Carrie

 

[DEES4]

Hi! My son had surgery at one day old due to meconium ileus. His intestines had also ruptured and he ended up with a colostomy for about a little over a month. He then had another surgery to reconnect his intestines at 5 weeks old. It was a long scary process. I remember having lots of ups and downs. I know this whole process is so scary but I am sure in the end everything will work out. Before you know it this stay in the NICU will be just a bad memory. But I know when actually going through it, it seems like forever.
Carrie

 

[DEES4]

Hi! My son had surgery at one day old due to meconium ileus. His intestines had also ruptured and he ended up with a colostomy for about a little over a month. He then had another surgery to reconnect his intestines at 5 weeks old. It was a long scary process. I remember having lots of ups and downs. I know this whole process is so scary but I am sure in the end everything will work out. Before you know it this stay in the NICU will be just a bad memory. But I know when actually going through it, it seems like forever.
Carrie

 

[DEES4]

Hi! My son had surgery at one day old due to meconium ileus. His intestines had also ruptured and he ended up with a colostomy for about a little over a month. He then had another surgery to reconnect his intestines at 5 weeks old. It was a long scary process. I remember having lots of ups and downs. I know this whole process is so scary but I am sure in the end everything will work out. Before you know it this stay in the NICU will be just a bad memory. But I know when actually going through it, it seems like forever.
<br />Carrie

 

[Tcole]

My daughter had surgery at 1 day old because on MI. She didn't get to eat for a long time. She had a lot of bowel taken out. So my daughters situation may differ from everyone else. She had a colostomy for about 8 weeks. Then 2 months later they added a g-tube. I get choked up now still thinking about how i felt leaving her. I was a walking bomb ready to explode on anyone that looked at me wrong. She stayed for 6 months. She isn't a "normal" situation. I pray your lil one gets the bowels healed. Take it day by day. I learned always have a say over your childs care. In the beginning, i thought i would let the doctors lead the way. So, today mama knows best. My daughter has come a long way. I am home with her and she is at 50% bmi and doing wonderful. Good Luck, keep us posted.

 

[Tcole]

My daughter had surgery at 1 day old because on MI. She didn't get to eat for a long time. She had a lot of bowel taken out. So my daughters situation may differ from everyone else. She had a colostomy for about 8 weeks. Then 2 months later they added a g-tube. I get choked up now still thinking about how i felt leaving her. I was a walking bomb ready to explode on anyone that looked at me wrong. She stayed for 6 months. She isn't a "normal" situation. I pray your lil one gets the bowels healed. Take it day by day. I learned always have a say over your childs care. In the beginning, i thought i would let the doctors lead the way. So, today mama knows best. My daughter has come a long way. I am home with her and she is at 50% bmi and doing wonderful. Good Luck, keep us posted.

 

[Tcole]

My daughter had surgery at 1 day old because on MI. She didn't get to eat for a long time. She had a lot of bowel taken out. So my daughters situation may differ from everyone else. She had a colostomy for about 8 weeks. Then 2 months later they added a g-tube. I get choked up now still thinking about how i felt leaving her. I was a walking bomb ready to explode on anyone that looked at me wrong. She stayed for 6 months. She isn't a "normal" situation. I pray your lil one gets the bowels healed. Take it day by day. I learned always have a say over your childs care. In the beginning, i thought i would let the doctors lead the way. So, today mama knows best. My daughter has come a long way. I am home with her and she is at 50% bmi and doing wonderful. Good Luck, keep us posted.

 

[Tcole]

My daughter had surgery at 1 day old because on MI. She didn't get to eat for a long time. She had a lot of bowel taken out. So my daughters situation may differ from everyone else. She had a colostomy for about 8 weeks. Then 2 months later they added a g-tube. I get choked up now still thinking about how i felt leaving her. I was a walking bomb ready to explode on anyone that looked at me wrong. She stayed for 6 months. She isn't a "normal" situation. I pray your lil one gets the bowels healed. Take it day by day. I learned always have a say over your childs care. In the beginning, i thought i would let the doctors lead the way. So, today mama knows best. My daughter has come a long way. I am home with her and she is at 50% bmi and doing wonderful. Good Luck, keep us posted.

 

[Tcole]

My daughter had surgery at 1 day old because on MI. She didn't get to eat for a long time. She had a lot of bowel taken out. So my daughters situation may differ from everyone else. She had a colostomy for about 8 weeks. Then 2 months later they added a g-tube. I get choked up now still thinking about how i felt leaving her. I was a walking bomb ready to explode on anyone that looked at me wrong. She stayed for 6 months. She isn't a "normal" situation. I pray your lil one gets the bowels healed. Take it day by day. I learned always have a say over your childs care. In the beginning, i thought i would let the doctors lead the way. So, today mama knows best. My daughter has come a long way. I am home with her and she is at 50% bmi and doing wonderful. Good Luck, keep us posted.