we have two children with CF ages 9 and 11 and resently we were admitted into the hospital only to find out that all CF paitients now have to be confind to there hospital rooms and are only aloud to leave for test and schooling, we were told that all CF credited hospitals were adopting this new rule, saying it is to protect the children from contacting other infections from other CF children... as CF parents we disagree with this new rule..from day one we were told not to confind our children from the world to put them in daycare and allow them to be in public schools and to be in sports.. where i my add is where our children pick up most of there infections that lead to hospitalizations... "NOT THE HOSPITAL" also by allowing our children to run the halls in the hospital it allowed the children to excersize there lungs.... now they have tiny rooms that allow little room to play and be active..plus most CF patients have a long hospital stay 15 to 20 days for IV med. that is a long time for a child to be confinded to a small room... and we believe will cause CF patients to become depressed and with drawn.. Some families both parents work or are a one parent family this also causes problems because the child ends up spending long hours by them selfs.. we already feel bad for not being able to be with our children all the time when they our admmited. this only makes us feel worse... If you could share with us how you feel about this we would apprecate any comments
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CF children having to be confinded to hospital rooms
- Thread starter anonymous
- Start date
we have two children with CF ages 9 and 11 and resently we were admitted into the hospital only to find out that all CF paitients now have to be confind to there hospital rooms and are only aloud to leave for test and schooling, we were told that all CF credited hospitals were adopting this new rule, saying it is to protect the children from contacting other infections from other CF children... as CF parents we disagree with this new rule..from day one we were told not to confind our children from the world to put them in daycare and allow them to be in public schools and to be in sports.. where i my add is where our children pick up most of there infections that lead to hospitalizations... "NOT THE HOSPITAL" also by allowing our children to run the halls in the hospital it allowed the children to excersize there lungs.... now they have tiny rooms that allow little room to play and be active..plus most CF patients have a long hospital stay 15 to 20 days for IV med. that is a long time for a child to be confinded to a small room... and we believe will cause CF patients to become depressed and with drawn.. Some families both parents work or are a one parent family this also causes problems because the child ends up spending long hours by them selfs.. we already feel bad for not being able to be with our children all the time when they our admmited. this only makes us feel worse... If you could share with us how you feel about this we would apprecate any comments
I understand your way of thinking, but the hospital environment is much different then a daycare. People have caught cepacia & pseudomonas while being in the hospital. These bugs dont "normally" hang around a day care or school in the form that makes us so vulnerable. Catching a cold or even developing pneumonia is much different then having more or less a life time with this bacteria. I dont agree with the total "lockdown". They should be able to roam either in certain areas, times &/or with mask & gown if needed. CF clinics that are accredidated are suppose to follow certain infection control rules so I am sure the hospital will crack down also. Maybe your hospital is new to the whole concept & just went "overboard". I would consult with your doctors office & see what they say. Maybe the Nurse Administrator or Infection Control of the hospital dont really understand the emotional/mental health involved also. I am not taking either side per say. I just want you to realize as much as they "slammed" you with this new regulation, they have justified reasons!
I understand your way of thinking, but the hospital environment is much different then a daycare. People have caught cepacia & pseudomonas while being in the hospital. These bugs dont "normally" hang around a day care or school in the form that makes us so vulnerable. Catching a cold or even developing pneumonia is much different then having more or less a life time with this bacteria. I dont agree with the total "lockdown". They should be able to roam either in certain areas, times &/or with mask & gown if needed. CF clinics that are accredidated are suppose to follow certain infection control rules so I am sure the hospital will crack down also. Maybe your hospital is new to the whole concept & just went "overboard". I would consult with your doctors office & see what they say. Maybe the Nurse Administrator or Infection Control of the hospital dont really understand the emotional/mental health involved also. I am not taking either side per say. I just want you to realize as much as they "slammed" you with this new regulation, they have justified reasons!
Emily65Roses
New member
I've always been one not to shelter CF kids, or keep them away from other kids, not to lock them inside, not to homeschool (unless there are outstanding circumstances) etc. You can ask anyone, I have very strong opinions on that.
<i>However</i>, like Melissa said, hospitals are not day cares or schools. In hospitals they're not confining the kids in order to protect from colds and flus, they're confining the kids from what can be, for a CFer, either life complicating, or life threatening bacteria.
I am also not one to tell anyone not to take their kids to pools or hot tubs or anything of the like, even though pseudomonas tends to hang out in spots like those.
<i>However</i>, the pseudomonas in hospitals is generally more resistant. And there are more strains floating around. Also, you can easily (without necessarily knowing it) expose your child to more dangerous bugs like MRSA or cepacia, if they roam the hospital freely.
Trust me, I know how boring the hospitals gets, I've almost always been confined to my room. And it does get intensely boring. Only suggestions I have for your kids... bring lots of books, videos/DVDs, puzzles, games, art supplies, ANYTHING AT ALL that they might want to play with. And if you're worried about the kids getting depressed while they're in, tell the nurses that and they should send Child Life Specialists (social workers) to visit with your kids occasionally. I know without even mentioning anything about my getting depressed, the Child Life people stopped in sometimes to see if I wanted to do some activity or project the other kids out in the halls were doing.
<i>However</i>, like Melissa said, hospitals are not day cares or schools. In hospitals they're not confining the kids in order to protect from colds and flus, they're confining the kids from what can be, for a CFer, either life complicating, or life threatening bacteria.
I am also not one to tell anyone not to take their kids to pools or hot tubs or anything of the like, even though pseudomonas tends to hang out in spots like those.
<i>However</i>, the pseudomonas in hospitals is generally more resistant. And there are more strains floating around. Also, you can easily (without necessarily knowing it) expose your child to more dangerous bugs like MRSA or cepacia, if they roam the hospital freely.
Trust me, I know how boring the hospitals gets, I've almost always been confined to my room. And it does get intensely boring. Only suggestions I have for your kids... bring lots of books, videos/DVDs, puzzles, games, art supplies, ANYTHING AT ALL that they might want to play with. And if you're worried about the kids getting depressed while they're in, tell the nurses that and they should send Child Life Specialists (social workers) to visit with your kids occasionally. I know without even mentioning anything about my getting depressed, the Child Life people stopped in sometimes to see if I wanted to do some activity or project the other kids out in the halls were doing.
Emily65Roses
New member
I've always been one not to shelter CF kids, or keep them away from other kids, not to lock them inside, not to homeschool (unless there are outstanding circumstances) etc. You can ask anyone, I have very strong opinions on that.
<i>However</i>, like Melissa said, hospitals are not day cares or schools. In hospitals they're not confining the kids in order to protect from colds and flus, they're confining the kids from what can be, for a CFer, either life complicating, or life threatening bacteria.
I am also not one to tell anyone not to take their kids to pools or hot tubs or anything of the like, even though pseudomonas tends to hang out in spots like those.
<i>However</i>, the pseudomonas in hospitals is generally more resistant. And there are more strains floating around. Also, you can easily (without necessarily knowing it) expose your child to more dangerous bugs like MRSA or cepacia, if they roam the hospital freely.
Trust me, I know how boring the hospitals gets, I've almost always been confined to my room. And it does get intensely boring. Only suggestions I have for your kids... bring lots of books, videos/DVDs, puzzles, games, art supplies, ANYTHING AT ALL that they might want to play with. And if you're worried about the kids getting depressed while they're in, tell the nurses that and they should send Child Life Specialists (social workers) to visit with your kids occasionally. I know without even mentioning anything about my getting depressed, the Child Life people stopped in sometimes to see if I wanted to do some activity or project the other kids out in the halls were doing.
<i>However</i>, like Melissa said, hospitals are not day cares or schools. In hospitals they're not confining the kids in order to protect from colds and flus, they're confining the kids from what can be, for a CFer, either life complicating, or life threatening bacteria.
I am also not one to tell anyone not to take their kids to pools or hot tubs or anything of the like, even though pseudomonas tends to hang out in spots like those.
<i>However</i>, the pseudomonas in hospitals is generally more resistant. And there are more strains floating around. Also, you can easily (without necessarily knowing it) expose your child to more dangerous bugs like MRSA or cepacia, if they roam the hospital freely.
Trust me, I know how boring the hospitals gets, I've almost always been confined to my room. And it does get intensely boring. Only suggestions I have for your kids... bring lots of books, videos/DVDs, puzzles, games, art supplies, ANYTHING AT ALL that they might want to play with. And if you're worried about the kids getting depressed while they're in, tell the nurses that and they should send Child Life Specialists (social workers) to visit with your kids occasionally. I know without even mentioning anything about my getting depressed, the Child Life people stopped in sometimes to see if I wanted to do some activity or project the other kids out in the halls were doing.
Our local clinic doesn't believe in keeping CF patients apart. Thinks it's more important for parents and patients to "socialize" with each other because many of them come from quite a distance away and don't think it's an issue because the claim they've never had a patient with cepacia. This isn't something my husband and I are willing to risk with our child. So we've walked out of clinic appointments when they've made us cool our heels in the teeny tiny waiting room. I would HATE to find out after an appointment that there was someone there with cepacia and that I risked my child's health. Besides, I do know for a fact that an older CFer died from cepacia a couple of years ago.
DS goes to a daycare center, preschool, swimming lessons, horseback riding, on field trips to the zoo, fair..... But he does NOT go anywhere near other cfers. Liza
DS goes to a daycare center, preschool, swimming lessons, horseback riding, on field trips to the zoo, fair..... But he does NOT go anywhere near other cfers. Liza
Our local clinic doesn't believe in keeping CF patients apart. Thinks it's more important for parents and patients to "socialize" with each other because many of them come from quite a distance away and don't think it's an issue because the claim they've never had a patient with cepacia. This isn't something my husband and I are willing to risk with our child. So we've walked out of clinic appointments when they've made us cool our heels in the teeny tiny waiting room. I would HATE to find out after an appointment that there was someone there with cepacia and that I risked my child's health. Besides, I do know for a fact that an older CFer died from cepacia a couple of years ago.
DS goes to a daycare center, preschool, swimming lessons, horseback riding, on field trips to the zoo, fair..... But he does NOT go anywhere near other cfers. Liza
DS goes to a daycare center, preschool, swimming lessons, horseback riding, on field trips to the zoo, fair..... But he does NOT go anywhere near other cfers. Liza
thelizardqueen
New member
I'm not sure how the hospitals work now, but as a child we were able to roam around. I don't agree with this, because I caught psuedo in hospital when I was young from another patient, and when I was in hospital at 15 I caught Mono from another girl there. As an adult, I am glad that we can do home IVs now, and don't have to worry about coming into contact with all the nasty bugs that are in hospital wards. Trust me, it is better off that your children are confined so that they won't pick up a bug that would be dangerous to them. Besides, hospital stays are no walk in the park - they aren't supposed to be fun. I would suggest having visitors come in (family), boards games, video games, books, etc for some play time for them.
thelizardqueen
New member
I'm not sure how the hospitals work now, but as a child we were able to roam around. I don't agree with this, because I caught psuedo in hospital when I was young from another patient, and when I was in hospital at 15 I caught Mono from another girl there. As an adult, I am glad that we can do home IVs now, and don't have to worry about coming into contact with all the nasty bugs that are in hospital wards. Trust me, it is better off that your children are confined so that they won't pick up a bug that would be dangerous to them. Besides, hospital stays are no walk in the park - they aren't supposed to be fun. I would suggest having visitors come in (family), boards games, video games, books, etc for some play time for them.
I personally think it is great your hospital did this and wish mine would. We confine Hayley, 2, with CF to her room for the most part when ever she is hospitalized. She has been hospitalized 3 times already and just got out of the hospital 2 days ago. If she leaves the room for any reason, she wears a mask. This time we were in Friday through Tuesday, and she left the room one time.
Yes, I know it is not easy to confine a child to a room, but it is really in their best interest. People are in the hospital because they are sick! They have all kinds of virus which may not be fatal to them, but could be very problematic for a CF'er. Our hospital was completely full, no open beds in the peds floor or adult floors, due to all kinds of respiratory virus, bacteria, ect. going around and no way was I going to let Hayley out of her room to catch any additional bugs. We bring all of our own toys, books, movies, ect. and go over everything in the room with lysol/clorox wipes as well. I just bought the new Clorox ANywhere Spray yesterday and will be using that from now on. You can never be too careful in the hospital, they aren't as clean and germ free as you would like to think,
We do not play with any toys from the play room, all KINDS of germs! Gross! Anyway, I honestly think that the hospital is much different than dayare, school, sports, ect. I would never hold Hayley back from being in any of those situations. But hospitals are for sick people and they could easily catch PA or MRSA there. Even though they might have contact with some sick kids at dayare or school, not to the degree they would if they ran around the hospital. Just my opinion!
Yes, I know it is not easy to confine a child to a room, but it is really in their best interest. People are in the hospital because they are sick! They have all kinds of virus which may not be fatal to them, but could be very problematic for a CF'er. Our hospital was completely full, no open beds in the peds floor or adult floors, due to all kinds of respiratory virus, bacteria, ect. going around and no way was I going to let Hayley out of her room to catch any additional bugs. We bring all of our own toys, books, movies, ect. and go over everything in the room with lysol/clorox wipes as well. I just bought the new Clorox ANywhere Spray yesterday and will be using that from now on. You can never be too careful in the hospital, they aren't as clean and germ free as you would like to think,
We do not play with any toys from the play room, all KINDS of germs! Gross! Anyway, I honestly think that the hospital is much different than dayare, school, sports, ect. I would never hold Hayley back from being in any of those situations. But hospitals are for sick people and they could easily catch PA or MRSA there. Even though they might have contact with some sick kids at dayare or school, not to the degree they would if they ran around the hospital. Just my opinion!
I personally think it is great your hospital did this and wish mine would. We confine Hayley, 2, with CF to her room for the most part when ever she is hospitalized. She has been hospitalized 3 times already and just got out of the hospital 2 days ago. If she leaves the room for any reason, she wears a mask. This time we were in Friday through Tuesday, and she left the room one time.
Yes, I know it is not easy to confine a child to a room, but it is really in their best interest. People are in the hospital because they are sick! They have all kinds of virus which may not be fatal to them, but could be very problematic for a CF'er. Our hospital was completely full, no open beds in the peds floor or adult floors, due to all kinds of respiratory virus, bacteria, ect. going around and no way was I going to let Hayley out of her room to catch any additional bugs. We bring all of our own toys, books, movies, ect. and go over everything in the room with lysol/clorox wipes as well. I just bought the new Clorox ANywhere Spray yesterday and will be using that from now on. You can never be too careful in the hospital, they aren't as clean and germ free as you would like to think,
We do not play with any toys from the play room, all KINDS of germs! Gross! Anyway, I honestly think that the hospital is much different than dayare, school, sports, ect. I would never hold Hayley back from being in any of those situations. But hospitals are for sick people and they could easily catch PA or MRSA there. Even though they might have contact with some sick kids at dayare or school, not to the degree they would if they ran around the hospital. Just my opinion!
Yes, I know it is not easy to confine a child to a room, but it is really in their best interest. People are in the hospital because they are sick! They have all kinds of virus which may not be fatal to them, but could be very problematic for a CF'er. Our hospital was completely full, no open beds in the peds floor or adult floors, due to all kinds of respiratory virus, bacteria, ect. going around and no way was I going to let Hayley out of her room to catch any additional bugs. We bring all of our own toys, books, movies, ect. and go over everything in the room with lysol/clorox wipes as well. I just bought the new Clorox ANywhere Spray yesterday and will be using that from now on. You can never be too careful in the hospital, they aren't as clean and germ free as you would like to think,
We do not play with any toys from the play room, all KINDS of germs! Gross! Anyway, I honestly think that the hospital is much different than dayare, school, sports, ect. I would never hold Hayley back from being in any of those situations. But hospitals are for sick people and they could easily catch PA or MRSA there. Even though they might have contact with some sick kids at dayare or school, not to the degree they would if they ran around the hospital. Just my opinion!
I just found some spray and wipes at target think the name is p2 -- I can't remember but comes in Lavendar and a fresh scent and it apparently kills a WHOLE bunch of germs -- on the label it indicated it killed Pseudo, Mac, Mrsa... I'm bringing it along to our next clinic appointment along with my have you washed your hands and stethoscope button.
I just found some spray and wipes at target think the name is p2 -- I can't remember but comes in Lavendar and a fresh scent and it apparently kills a WHOLE bunch of germs -- on the label it indicated it killed Pseudo, Mac, Mrsa... I'm bringing it along to our next clinic appointment along with my have you washed your hands and stethoscope button.
thelizardqueen
New member
My clinic now has a policy where hand sanitizations stand are set up at every corner of the hospital. You HAVE to wash your hands when you come into clinic, when you leave the waiting room to see the doc, and once again when you leave the clinic. I make it a policy to ALWAYS carry antibactirial hand sanitizer EVERYWHER with me. There's no telling what you can pick up by touching something. I wouldn't want to be the one catching Cepacia by touching something that that person with Cepacia touched. I'm glad that hospitals now have that policy in effect. It makes for healthier living. Hospitals are so chock full of nasty bugs and germs!
thelizardqueen
New member
My clinic now has a policy where hand sanitizations stand are set up at every corner of the hospital. You HAVE to wash your hands when you come into clinic, when you leave the waiting room to see the doc, and once again when you leave the clinic. I make it a policy to ALWAYS carry antibactirial hand sanitizer EVERYWHER with me. There's no telling what you can pick up by touching something. I wouldn't want to be the one catching Cepacia by touching something that that person with Cepacia touched. I'm glad that hospitals now have that policy in effect. It makes for healthier living. Hospitals are so chock full of nasty bugs and germs!
Wow Thats Crazy....The only way in the UW(university Wisconsin) hospitol makes you stay in room as a cf patient is if your contagious other wise they want you out and about....they even have people come in to get you out of your room as a Teenage id hate that rule id go insane....but also it is a Childrens hospitol i stay in...i disagree with that rule
Wow Thats Crazy....The only way in the UW(university Wisconsin) hospitol makes you stay in room as a cf patient is if your contagious other wise they want you out and about....they even have people come in to get you out of your room as a Teenage id hate that rule id go insane....but also it is a Childrens hospitol i stay in...i disagree with that rule
thelizardqueen
New member
I think I'd rather be safer then sorry. Like I said, I've caught two bugs when I was aloud to interact with other patients. I'd rather be confined and be bored out of my mind, then let loose, and catch a really bad bug by accident.
thelizardqueen
New member
I think I'd rather be safer then sorry. Like I said, I've caught two bugs when I was aloud to interact with other patients. I'd rather be confined and be bored out of my mind, then let loose, and catch a really bad bug by accident.