Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Welcome Ally, this is a great place to be. patty mom of 2 daughters with cf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Hello Everyone, ive just joined this site and im new to this. My name is Ally i live in kentin the UK and i have 2 lovely Daughters Kirstie,10(wocf)and Emma7(wcf) Emma was diagnosed at 5 mths old with CF and a big shock it was. Up to a year ago Emma was doing well but since then her weight has taken a nose dive and she is now admitted to our local hospital every 8 weeks for IVs. we are now waiting for her to have a portacath put in, and as i dont knw much about this are there any other parents out there whos children have one of those. I look forward to chatting to u soon Ally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Ally, Welcome to this wonderful group. I don't have any info about portacaths but I am sure there are several others on the list that will be able to help. Christy Mommy to Mackenzie 4.5 w/cf and Peyton 1 w/o cf cf parents...hello Hello Everyone, ive just joined this site and im new to this. My name is Ally i live in kentin the UK and i have 2 lovely Daughters Kirstie,10(wocf)and Emma7(wcf) Emma was diagnosed at 5 mths old with CF and a big shock it was. Up to a year ago Emma was doing well but since then her weight has taken a nose dive and she is now admitted to our local hospital every 8 weeks for IVs. we are now waiting for her to have a portacath put in, and as i dont knw much about this are there any other parents out there whos children have one of those. I look forward to chatting to u soon Ally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 WELCOME.. you will get much info here. LOVE & HUGS, GrandmomBEV cf parents...hello Hello Everyone, ive just joined this site and im new to this. My name is Ally i live in kentin the UK and i have 2 lovely Daughters Kirstie,10(wocf)and Emma7(wcf) Emma was diagnosed at 5 mths old with CF and a big shock it was. Up to a year ago Emma was doing well but since then her weight has taken a nose dive and she is now admitted to our local hospital every 8 weeks for IVs. we are now waiting for her to have a portacath put in, and as i dont knw much about this are there any other parents out there whos children have one of those. I look forward to chatting to u soon Ally 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. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 --- Chirsty Hi ty for the Email its nice to meet up with some other paretns, i hope i get to chat more to u Ally In cfparents@y..., " Christy Jobe " wrote: > Ally, > > Welcome to this wonderful group. I don't have any info about portacaths but I am sure there are several others on the list that will be able to help. > > Christy > Mommy to Mackenzie 4.5 w/cf and Peyton 1 w/o cf > > > cf parents...hello > > > Hello Everyone, ive just joined this site and im new to this. > My name is Ally i live in kentin the UK and i have 2 lovely Daughters > Kirstie,10(wocf)and Emma7(wcf) > > Emma was diagnosed at 5 mths old with CF and a big shock it was. > Up to a year ago Emma was doing well but since then her weight has > taken a nose dive and she is now admitted to our local hospital > every 8 weeks for IVs. > > we are now waiting for her to have a portacath put in, and as i dont > knw much about this are there any other parents out there whos > children have one of those. > I look forward to chatting to u soon > Ally > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 ---Grandmom Bev, thankyou for the welcome, need all the info i can get hope to chat to u soon Ally In cfparents@y..., " bev " wrote: > WELCOME.. you will get much info here. > > LOVE & HUGS, GrandmomBEV > > cf parents...hello > > > Hello Everyone, ive just joined this site and im new to this. > My name is Ally i live in kentin the UK and i have 2 lovely Daughters > Kirstie,10(wocf)and Emma7(wcf) > > Emma was diagnosed at 5 mths old with CF and a big shock it was. > Up to a year ago Emma was doing well but since then her weight has > taken a nose dive and she is now admitted to our local hospital > every 8 weeks for IVs. > > we are now waiting for her to have a portacath put in, and as i dont > knw much about this are there any other parents out there whos > children have one of those. > I look forward to chatting to u soon > Ally > > > > > 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. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2002 Report Share Posted January 23, 2002 Ally Hi and Welcome to the list. I am sorry your daughter is not doing so well. If she needs ivs that frequently, you will think the port is a godsend. only uses his every 5 to six months and yet still we are thrilled with it (or rather, he is especially thrilled). they got traumatized by picc lines, long stories there. anyway, I guess I am going in reverse. Two of my three with CF have ports, who is almost 6 now, and Mallory who is 4. mallory was about 2 when she got hers and was 4. His last one did fail before Christmas and he got a new one right before Christmas, but other than that we have had really good experiences with their ports and the kids really like having them. It has also made tuneups easier and faster to start for Mallory (is either scheduled for every 3 months or does not make it that long) because we access their ports ourselves and all that has to happen is the doc calls home health and then home health delivers the meds. I would strongly advise limiting the number of people who access the port (preferably you and your husband and maybe one or twot rusted nurses.) That is how we are with it, just us and one nurse we trust at CF clinic and one home health nurse if ever necessary, but so far we have just always done it. It sure makes things easier on the kids, Emla cream and they dont feel it at all (half the time, I do it while they are asleep and they dont even wake up) Just make sure you use lots of emla and put it on 1 1/2 hours before. (we have tried sh orted times, this seems to work the best) Take care and hope this helps. feel free to email me off list if you have other questions. Jen mommy of 7, 3 with CF, one with Juvenile Diabetes > Hello Everyone, ive just joined this site and im new to this. > My name is Ally i live in kentin the UK and i have 2 lovely Daughters > Kirstie,10(wocf)and Emma7(wcf) > > Emma was diagnosed at 5 mths old with CF and a big shock it was. > Up to a year ago Emma was doing well but since then her weight has > taken a nose dive and she is now admitted to our local hospital > every 8 weeks for IVs. > > we are now waiting for her to have a portacath put in, and as i dont > knw much about this are there any other parents out there whos > children have one of those. > I look forward to chatting to u soon > Ally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 - Hi Ty for ur reply it helped a lot with what u told me, ive seen a dummy verison that our hospital over here in the UK have showed Emma on how it will work, and i must admit i was very fasinated by it. The long line that they put in are ok but seem to pack up after 10days of treatment and its nightmare getting it out let alone putting another one in, so this i will be glad to see her have. We already have 2 community nurses that come out to Emma on a regualr basis that will look after her portcath and once show my husband and I will do it as well. Ty for to for letting me write to u and ur personal email address and the offer extends to u as well. I hope ur family is keeping well and i hope to chat to u soon Take care Ally ( mum to Emma wcf)-- In cfparents@y..., " jenmommyof7 " wrote: > Ally > Hi and Welcome to the list. I am sorry your daughter is not doing > so well. If she needs ivs that frequently, you will think the port is > a godsend. only uses his every 5 to six months and yet > still we are thrilled with it (or rather, he is especially thrilled). they > got traumatized by picc lines, long stories there. anyway, I guess > I am going in reverse. Two of my three with CF have ports, > who is almost 6 now, and Mallory who is 4. mallory was > about 2 when she got hers and was 4. His last one did > fail before Christmas and he got a new one right before > Christmas, but other than that we have had really good > experiences with their ports and the kids really like having them. > It has also made tuneups easier and faster to start for Mallory (is > either scheduled for every 3 months or does not make it that > long) because we access their ports ourselves and all that has > to happen is the doc calls home health and then home health > delivers the meds. I would strongly advise limiting the number of > people who access the port (preferably you and your husband > and maybe one or twot rusted nurses.) That is how we are with > it, just us and one nurse we trust at CF clinic and one home > health nurse if ever necessary, but so far we have just always > done it. It sure makes things easier on the kids, Emla cream > and they dont feel it at all (half the time, I do it while they are > asleep and they dont even wake up) Just make sure you use > lots of emla and put it on 1 1/2 hours before. (we have tried sh > orted times, this seems to work the best) > Take care and hope this helps. feel free to email me off list if you > have other questions. > Jen > mommy of 7, 3 with CF, one with Juvenile Diabetes > > > > Hello Everyone, ive just joined this site and im new to this. > > My name is Ally i live in kentin the UK and i have 2 lovely > Daughters > > Kirstie,10(wocf)and Emma7(wcf) > > > > Emma was diagnosed at 5 mths old with CF and a big shock it > was. > > Up to a year ago Emma was doing well but since then her > weight has > > taken a nose dive and she is now admitted to our local > hospital > > every 8 weeks for IVs. > > > > we are now waiting for her to have a portacath put in, and as i > dont > > knw much about this are there any other parents out there > whos > > children have one of those. > > I look forward to chatting to u soon > > Ally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2002 Report Share Posted January 24, 2002 Welcome Ally,, sorry to hear Emma's weight had plummeted.. This is the best group of advisors that have been there done that. many have and have had port-a-caths and they can answer your questions.. Best of Luck, Stein...mom to CF (20mo) & Tori wo/CF (4.7yrs) in Mass cf parents...hello Hello Everyone, ive just joined this site and im new to this. My name is Ally i live in kentin the UK and i have 2 lovely Daughters Kirstie,10(wocf)and Emma7(wcf) Emma was diagnosed at 5 mths old with CF and a big shock it was. Up to a year ago Emma was doing well but since then her weight has taken a nose dive and she is now admitted to our local hospital every 8 weeks for IVs. we are now waiting for her to have a portacath put in, and as i dont knw much about this are there any other parents out there whos children have one of those. I look forward to chatting to u soon Ally Quote Link to comment Share on other sites More sharing options...
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