CF children having to be confinded to hospital rooms

[anonymous]

I have to agree with Melissa also. When Kait is in the hospital she is normally running the halls and the hospital with her dad. They like to run around and see what is going on and join in with the hospital activities,but i am the one that sits there and worries about what bug my daughter is going to catch. When we walk into the hospital or even the drs. office i grab a mask and make Kait wear it, I normally will put one on as well, so she doesn't feel so out of place. We went to the eye dr. for my other child and the office is located at Childrens Hospital, while we were there Kait wore a mask then. Some think that i am overprotective but i want my daughter to stay as healthy as possible for as long as possible. I also believe that Kait should be able to experience things and have fun so we do go swimming (indoor waterparks ) in the winter months and i try not to shelter her too much, but hospitals are not always the cleanest envrionment for our CF kids and i try to take as many precautions while we are there.

I hope that our hospital has started this policy

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

I have to agree with Melissa also. When Kait is in the hospital she is normally running the halls and the hospital with her dad. They like to run around and see what is going on and join in with the hospital activities,but i am the one that sits there and worries about what bug my daughter is going to catch. When we walk into the hospital or even the drs. office i grab a mask and make Kait wear it, I normally will put one on as well, so she doesn't feel so out of place. We went to the eye dr. for my other child and the office is located at Childrens Hospital, while we were there Kait wore a mask then. Some think that i am overprotective but i want my daughter to stay as healthy as possible for as long as possible. I also believe that Kait should be able to experience things and have fun so we do go swimming (indoor waterparks ) in the winter months and i try not to shelter her too much, but hospitals are not always the cleanest envrionment for our CF kids and i try to take as many precautions while we are there.

I hope that our hospital has started this policy

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[momofjosh]

I just want to say that my son got B-Cepacia and MRSA and the doctors said he most likely got it while in the hospital or one of his clinic visits. After that his health declined rapidly. I know hospital stays are boring and lonely. My son was in the hospital A LOT but I wish things would have been different. Maybe I would have had a little more time with him. It really is for their own good. When my son was in the hospital, if I wasn't there he would call me on the phone constantly. But I didn't care because I know it helped him deal with it. We got Josh a laptop computer to use while he was in the hospital. We also decorated his room for the holidays if it was around one. We also brought pictures of the family and friends to hang around his room. We always tried to pack plenty of activities for him to do while he was in the hospital. Good luck! I know this is hard....(believe me!) But you really want to protect your children from bad germs lurking in the hospital.

momofjosh

 

[momofjosh]

I just want to say that my son got B-Cepacia and MRSA and the doctors said he most likely got it while in the hospital or one of his clinic visits. After that his health declined rapidly. I know hospital stays are boring and lonely. My son was in the hospital A LOT but I wish things would have been different. Maybe I would have had a little more time with him. It really is for their own good. When my son was in the hospital, if I wasn't there he would call me on the phone constantly. But I didn't care because I know it helped him deal with it. We got Josh a laptop computer to use while he was in the hospital. We also decorated his room for the holidays if it was around one. We also brought pictures of the family and friends to hang around his room. We always tried to pack plenty of activities for him to do while he was in the hospital. Good luck! I know this is hard....(believe me!) But you really want to protect your children from bad germs lurking in the hospital.

momofjosh

 

[anonymous]

DS came home from the NICU with a nasty bug and ended up back in the local hospital for another month. He ended up on Tobi at the age of three months. One thing that I noticed at the hospital that even though the rts and everyone washed their hands -- the rts would go from bed to bed wearing the same scrubs and using the SAME bottle of albuterol for each patient. They just kept that and tubes of saline in their pockets.

I am so terrified that DS is going to get something at the CF clinic or hospital I get physically ill. And CF events like great strides, make me edgy too even though it's outdoors 'cuz I know a couple of people who've posted other sites have indicated they have cepacia and don't feel the rules apply to them and have attended Climb for cure, great strides, etc.

A friend of mine's daughter died as a teenager waiting for a lung transplant -- her problems started as a newborn when an infant with RSV shared a room with her, the lung damage combined with mrsa, cepacia, etc. just was too much.

 

[anonymous]

DS came home from the NICU with a nasty bug and ended up back in the local hospital for another month. He ended up on Tobi at the age of three months. One thing that I noticed at the hospital that even though the rts and everyone washed their hands -- the rts would go from bed to bed wearing the same scrubs and using the SAME bottle of albuterol for each patient. They just kept that and tubes of saline in their pockets.

I am so terrified that DS is going to get something at the CF clinic or hospital I get physically ill. And CF events like great strides, make me edgy too even though it's outdoors 'cuz I know a couple of people who've posted other sites have indicated they have cepacia and don't feel the rules apply to them and have attended Climb for cure, great strides, etc.

A friend of mine's daughter died as a teenager waiting for a lung transplant -- her problems started as a newborn when an infant with RSV shared a room with her, the lung damage combined with mrsa, cepacia, etc. just was too much.

 

[anonymous]

thank you all for giving me some insite on how you feel. as a mother i do worrie about my childrens health..and home IV's have been a blessing to are family having 3 boys 2 with CF makes hospital stays harder to deal with. because i have to confined my 4 yr. old (no CF) in the hospital room as well while on the floor.. i believe there needs to be some guide lines to keep our children safer. but to confind them totaly to there rooms i believe is a little harsh, my CF children go to school with 4 other CF children in there building although the school does there best to keep them seprated they still share the same halls and some times class rooms (when they switch classes) not in the same class room at the same time...but the doctors still don't recomend home school the kids our they not at the same risk of catching MRSA and other bad grems... because the school can not tell us who the other students are and what bugs they carrie..or so they say.. should i think about home school my children!!!!

 

[anonymous]

thank you all for giving me some insite on how you feel. as a mother i do worrie about my childrens health..and home IV's have been a blessing to are family having 3 boys 2 with CF makes hospital stays harder to deal with. because i have to confined my 4 yr. old (no CF) in the hospital room as well while on the floor.. i believe there needs to be some guide lines to keep our children safer. but to confind them totaly to there rooms i believe is a little harsh, my CF children go to school with 4 other CF children in there building although the school does there best to keep them seprated they still share the same halls and some times class rooms (when they switch classes) not in the same class room at the same time...but the doctors still don't recomend home school the kids our they not at the same risk of catching MRSA and other bad grems... because the school can not tell us who the other students are and what bugs they carrie..or so they say.. should i think about home school my children!!!!

 

[thelizardqueen]

I'm not sure I would trust a school to tell me if a CF child had a very bad bug. Again, that's just me. Same being said for a hospital. Yeah its harsh that children with CF are confined, but they do that for a reason. Daycare and school is a lot differnt then a hospital. Hospitals are where SICK people go, and who knows what sort of bug they'll have. One hospital I was at knew I had CF, and put me in a room with a woman who had TB. I rose a big stink about that. Its little things like that that would worry me about catching a bug. I suppose if you don't want to confine your children 24/7, take them for walks once and a while, but make sure they are wearing masks, and that if they touch something in the hospital, make sure they are washing their hands with a antibacterial hand sanitizer.

 

[thelizardqueen]

I'm not sure I would trust a school to tell me if a CF child had a very bad bug. Again, that's just me. Same being said for a hospital. Yeah its harsh that children with CF are confined, but they do that for a reason. Daycare and school is a lot differnt then a hospital. Hospitals are where SICK people go, and who knows what sort of bug they'll have. One hospital I was at knew I had CF, and put me in a room with a woman who had TB. I rose a big stink about that. Its little things like that that would worry me about catching a bug. I suppose if you don't want to confine your children 24/7, take them for walks once and a while, but make sure they are wearing masks, and that if they touch something in the hospital, make sure they are washing their hands with a antibacterial hand sanitizer.

 

[anonymous]

they do wear masks but the doctors want them not to leave the room at all, i always want my kids to wear masks and to wash there hands every time they left and returnrd to there rooms i understand the rick of other infections in the hospitals and there our lots of sick people and wearing masks is a must in the hospital, but i feel they should be aloud to go get food from the cafe or take walks off the floor to the gift shop at least, they wont even allow that even with masks!! i thought thats way you wear the masks to protect you from grems and other infections.......

and i can't beleave they stuck you in a room with someone else CFers should always have there own room, i hope they never do that to you again...

 

[anonymous]

they do wear masks but the doctors want them not to leave the room at all, i always want my kids to wear masks and to wash there hands every time they left and returnrd to there rooms i understand the rick of other infections in the hospitals and there our lots of sick people and wearing masks is a must in the hospital, but i feel they should be aloud to go get food from the cafe or take walks off the floor to the gift shop at least, they wont even allow that even with masks!! i thought thats way you wear the masks to protect you from grems and other infections.......

and i can't beleave they stuck you in a room with someone else CFers should always have there own room, i hope they never do that to you again...

 

[anonymous]

I understand school is different from hospital stays as well my point there is they attend school with 4 other CF students and they our all in the same building and we do not know if any of these kids have MRSA or any other of the really bad infection that can be very harmful to other CFers and it is a concern i have because if they are worried about that in the hospital our my children not at risk at school with 4 other students using the same restrooms and class rooms and hall ways, our doctor said most of these bugs live for more than 48 hours after you touch something.... so would you think about home schooling? sorry if that came out wrong on my last form this is what i wanted really wanted to know

 

[anonymous]

I understand school is different from hospital stays as well my point there is they attend school with 4 other CF students and they our all in the same building and we do not know if any of these kids have MRSA or any other of the really bad infection that can be very harmful to other CFers and it is a concern i have because if they are worried about that in the hospital our my children not at risk at school with 4 other students using the same restrooms and class rooms and hall ways, our doctor said most of these bugs live for more than 48 hours after you touch something.... so would you think about home schooling? sorry if that came out wrong on my last form this is what i wanted really wanted to know

 

[thelizardqueen]

I don't know if I'd suggest home schooling - as kids do need to socialize with others there own age - even CFer's. What about a different school? One that didn't have a CF person attending?

 

[thelizardqueen]

I don't know if I'd suggest home schooling - as kids do need to socialize with others there own age - even CFer's. What about a different school? One that didn't have a CF person attending?

 

[Jane]

The elementary school my sons attended had five CF kids at one point (our town has 9 younger than 14). We were always insistant on educating the nurse, teachers and administration about the nature of the disease and need for bacteria control. We even brought in a nurse from clinic to educate the teachers. They were more than helpful about keeping kids apart and healthy while at school. We had the kids see each other (from a distance) so they knew the faces to avoid. The nurse even wrote a grant to get an oxymeter (sp) so she could monitor sats. Before the privacy act, she even called all of us when one of the kids got cepacia. The privacy thing is a real problem now. Believe it or not, the biggest problem we had was that some of the other parents weren't forthcoming about their kids' issues.
It is creepy to think that at some point the kids could be in the same bathroom or playground area at the same time, but they can't live in a bubble.

 

[Jane]

The elementary school my sons attended had five CF kids at one point (our town has 9 younger than 14). We were always insistant on educating the nurse, teachers and administration about the nature of the disease and need for bacteria control. We even brought in a nurse from clinic to educate the teachers. They were more than helpful about keeping kids apart and healthy while at school. We had the kids see each other (from a distance) so they knew the faces to avoid. The nurse even wrote a grant to get an oxymeter (sp) so she could monitor sats. Before the privacy act, she even called all of us when one of the kids got cepacia. The privacy thing is a real problem now. Believe it or not, the biggest problem we had was that some of the other parents weren't forthcoming about their kids' issues.
It is creepy to think that at some point the kids could be in the same bathroom or playground area at the same time, but they can't live in a bubble.

 

[anonymous]

Well,
this isn't going to make you feel better about things.
but lots of people culture positive for MRSA--especially folks who work in the health field or live with those that do.
No matter what school/church/movie theater your kids go to, the person next to them might culture positive for MRSA.
I think you have to work with them on being real careful about personal hygene (no hands to face, etc) rather than keep them away from others.

 

[anonymous]

Well,
this isn't going to make you feel better about things.
but lots of people culture positive for MRSA--especially folks who work in the health field or live with those that do.
No matter what school/church/movie theater your kids go to, the person next to them might culture positive for MRSA.
I think you have to work with them on being real careful about personal hygene (no hands to face, etc) rather than keep them away from others.