Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 Folks, You know, I'm sorta sad that this list doesn't maintain archives anymore because lately there have been lots of good tips on surviving a hospital stay with young children. My kids with CF (ages 6 and 3 1/2) have never been hospitalized, so I keep trying to file away everyone's gems of knowledge for the day that we face our first hospitalization. I'd love to compile a " booklet " for CF parents about how to make sure your kid gets good treatment, is protected from infection, and is treated humanly in the hospital. I write a column for the CF Pharmacy Newsletter, so I could try to include the tips there, if the CFF approved of them. But I suspect that many of them might be more likely to pass muster in an independent publication of sorts -- perhaps Grandmom Bev could put them in her newsletter??? I'm willing to compile them if you send them to me. Here's a tip I would include... just speculating if this is even possible, though, because my kids have never been in the hospital. TIP -- Bring a small travel TV/VCR combo to the hospital , (available for about $100 at Price Club), so that you can just plug it in and let your child watch their favorite kiddie videos or movies in their room. It wouldn't work for regular TV in all likelihood but most kids have their favorite video collection at home anyway. What does everyone think? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 DEAR Janet, I am sure you are just not realizing it, BUT . I have the only Cystic Fibrosis PHARMACY in the USA. the CFF pharmacy is called the CF SERVICES Pharmacy. We have the Cystic Fibrosis Pharmacy name registered. We were doing business as that for 5 years before they opened theirs in Bethesda.(since my granddaughter was born 16+ years ago) When they had to change it to a FOR-PROFIT division of the CF Foundation, they contract out to Health Scripts in CO (owned by DURR) and prescriptions go out from there. The office, etc is still in Md. I have included HINTS in the past in our INFORMER newsletter and would love to continue on with it. You are more that welcome to submit your listings to me. I really think that is a super idea. Angie, on another list has been collecting them also from posts and has them as a link on the CYSTIC-L list home page. I really think this current hint of yours for the kiddo's in hospital is fantastic. and definitely one that should be included in your booklet/list. Please send me whatever you'd like in The CF Pharmacy newsletter the INFORMER.I would love it!!! LOVE & HUGS, GrandmomBEV Book idea! Folks, You know, I'm sorta sad that this list doesn't maintain archives anymore because lately there have been lots of good tips on surviving a hospital stay with young children. My kids with CF (ages 6 and 3 1/2) have never been hospitalized, so I keep trying to file away everyone's gems of knowledge for the day that we face our first hospitalization. I'd love to compile a " booklet " for CF parents about how to make sure your kid gets good treatment, is protected from infection, and is treated humanly in the hospital. I write a column for the CF Pharmacy Newsletter, so I could try to include the tips there, if the CFF approved of them. But I suspect that many of them might be more likely to pass muster in an independent publication of sorts -- perhaps Grandmom Bev could put them in her newsletter??? I'm willing to compile them if you send them to me. Here's a tip I would include... just speculating if this is even possible, though, because my kids have never been in the hospital. TIP -- Bring a small travel TV/VCR combo to the hospital , (available for about $100 at Price Club), so that you can just plug it in and let your child watch their favorite kiddie videos or movies in their room. It wouldn't work for regular TV in all likelihood but most kids have their favorite video collection at home anyway. What does everyone think? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 A good idea - our hospital actually has TVs in the rooms with VCRs. Lori Book idea! > > TIP -- Bring a small travel TV/VCR combo to the hospital , (available for > about $100 at Price Club), so that you can just plug it in and let your > child watch their favorite kiddie videos or movies in their room. It > wouldn't work for regular TV in all likelihood but most kids have their > favorite video collection at home anyway. > > What does everyone think? > > Janet > > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 Janet, Our hsp. also has Tv's in each room and video games, but you need to be 5 for the games. But it still gets mighty boring especially for the parent if as in our case you child watches the same thing over and over as its there favourite. If I see another wiggles video I'll scream. But its soooo much better than staring at the walls. Book idea! > > > > > TIP -- Bring a small travel TV/VCR combo to the hospital , (available > for > > about $100 at Price Club), so that you can just plug it in and let your > > child watch their favorite kiddie videos or movies in their room. It > > wouldn't work for regular TV in all likelihood but most kids have their > > favorite video collection at home anyway. > > > > What does everyone think? > > > > Janet > > > > > > > > > > *********************** > > This is a secular list. > > *********************** > > > > > > PLEASE do not post religious emails to the list. > > > > > > -------------------------------------------------- > > > > > > The opinions and information exchanged on this list should > > IN NO WAY > > be construed as medical advice. > > > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR > TREATMENTS. > > > > -------------------------------------------------- > > > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > > > _________________________________________________ > > Post message: cfparentsegroups > > Subscribe: cfparents-subscribeegroups > > Unsubscribe: cfparents-unsubscribeegroups > > List owner: cfparents-owneregroups > > _________________________________________________ > > > > WE HAVE A CHAT PAGE!!! > > /chat/cfparents > > _________________________________________________ > > > > > > > > > > *********************** > This is a secular list. > *********************** > > > PLEASE do not post religious emails to the list. > > > -------------------------------------------------- > > > The opinions and information exchanged on this list should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 Hi Janet, why do you say, that there is no list archive anymore? If you have problems to access the list homepage at all, then you probably haven't registered with Yahoo yet. The anewed change is a pain in the butt, since you have to go to the whole registration procedure again, but afterwards you have access to all list features as usual. Email me, if you have ongoing problems. Aside from that I think that it is a good idea to collect mails about a special topic and create a special folder in our file section with all those mails. Even if you use the search engine of the archive it is not easy to find the mails you are looking for and your idea would make it much easier. Torsten,dad of Fiona almost 4wcf e-mail: torstenkrafft@... Book idea! > Folks, > You know, I'm sorta sad that this list doesn't maintain archives anymore > because lately there have been lots of good tips on surviving a hospital > stay with young children. > My kids with CF (ages 6 and 3 1/2) have never been hospitalized, so I keep > trying to file away everyone's gems of knowledge for the day that we face > our first hospitalization. I'd love to compile a " booklet " for CF parents > about how to make sure your kid gets good treatment, is protected from > infection, and is treated humanly in the hospital. I write a column for > the CF Pharmacy Newsletter, so I could try to include the tips there, if > the CFF approved of them. But I suspect that many of them might be more > likely to pass muster in an independent publication of sorts -- perhaps > Grandmom Bev could put them in her newsletter??? > I'm willing to compile them if you send them to me. > Here's a tip I would include... just speculating if this is even possible, > though, because my kids have never been in the hospital. > > TIP -- Bring a small travel TV/VCR combo to the hospital , (available for > about $100 at Price Club), so that you can just plug it in and let your > child watch their favorite kiddie videos or movies in their room. It > wouldn't work for regular TV in all likelihood but most kids have their > favorite video collection at home anyway. > > What does everyone think? > > Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 A Question on hospitals Why do they charge for TV in the peds ward? I think that is terrible these kids have a hard enough time being in there no matter what they have. I can see charging for the phone. When the baby was in we never had it turned on we have a pager and cell phone so that was easier. And any calls would have been long distance. Meg Mom of 3 Moe 10yowcf, Kate 5yowocf & Jack infant wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Meg, In our hsp. there is no charge for the tv's at all. Or for any of the videos or video games. They were all donated from fundraising. I know in adult hsp; they charge but not for the kids. Re: Book idea! > A Question on hospitals Why do they charge for TV in the peds ward? I think > that is terrible these kids have a hard enough time being in there no matter > what they have. I can see charging for the phone. When the baby was in we > never had it turned on we have a pager and cell phone so that was easier. > And any calls would have been long distance. > > Meg > Mom of 3 > Moe 10yowcf, Kate 5yowocf & Jack infant wcf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 Hi Meg, Hope all is well with the kids, at CHOP the tv and vcr are free, but the phone calls are charged, and you cant make one unless you have a calling card or are doing the collect thing. Now there are some phones you can call out on free, like in the cf center itself, and that is very close to the hospital, just across a bridge from building to building. Take care, and hope you guys didnt get buried by the snow. , mommy of 4, , 16 and begging to drive the family auto, (I dont need more grey hair here) Caleb, 6 wishing to be 3 again, and the worrier of the family, , 5 and the next famous artist, and , 17months with CF and reflux and a beautiful smile and bright blue eyes, whose greatest passions are dancing and Elmo. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2001 Report Share Posted February 8, 2001 In our hospital they dont charge for the Tv, but you have to use a calling card for the phone. We are cozy with the secretary on the floor and she opens the line so I could use my lap top there. And I have to tell you if I didnt have my lap top as a link to the outside world I would have surely gone mad! Also there are Activity rooms on each wing on the floors. THey have schedualed times for crafts and activities. The woman and volunteers that run the activity center will also baby sit if you want to run and get a sandwich or something. FYI Stein..Mom of CF (8 1/2 mo) & Tori WOcf (3 1/2 yr W/asthma) > Meg, > > In our hsp. there is no charge for the tv's at all. Or for any of the > videos or video games. They were all donated from fundraising. I know in > adult hsp; they charge but not for the kids. > > > Re: Book idea! > > > > A Question on hospitals Why do they charge for TV in the peds ward? I > think > > that is terrible these kids have a hard enough time being in there no > matter > > what they have. I can see charging for the phone. When the baby was in > we > > never had it turned on we have a pager and cell phone so that was easier. > > And any calls would have been long distance. > > > > Meg > > Mom of 3 > > Moe 10yowcf, Kate 5yowocf & Jack infant wcf > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2001 Report Share Posted February 9, 2001 With regard to the hsp. Each ward on each floor have a play co-ordinator to play games, organise outings. etc. for the kids. Of course Eilish doesnt go as she's isolated (solitary confinement) but the kids who are older and are mutli-resistant all stay and play together in the big rooms (general population). My husband gave then ( ) names, as it does feel like prision. They also have volunteers who run errands for the mothers if you want, but I take Eilish out of the hsp alot to the river etc near the hsp. just to get fresh air as the hsp. makes me want to sleep all the time. Re: Book idea! > > > > > > > A Question on hospitals Why do they charge for TV in the peds > ward? I > > think > > > that is terrible these kids have a hard enough time being in > there no > > matter > > > what they have. I can see charging for the phone. When the baby > was in > > we > > > never had it turned on we have a pager and cell phone so that was > easier. > > > And any calls would have been long distance. > > > > > > Meg > > > Mom of 3 > > > Moe 10yowcf, Kate 5yowocf & Jack infant wcf > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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