Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 no, he doesn't deserve this, none of our little cf'ers do. That's what makes this whole disease so wretched! They didn't ask to be born carrying this burden. I'm sorry if this post isn't lifting you up, I just want to share in your pity for a moment and say I'm sorry. Are they planning to treat the PA aggressively? I don't know your history, but in our daughter's case we were able to eradicate the pseudomonis with a hospital stay and some follow up coly-mycin. I'm sure your doctors have the best treatment plan, but just wanted you to know that it wasn't the beginning of the end- as we'd once thought... many blessings to you today, completely devastated > well within the past week i have found out that my son has a mucus > plug and decreased breath sounds in his right lung, a problem with > diarhea, he lost 2.6 lbs and i found out yesterday that he has > pseudomonas. i feel so lost. and so scared. he just doesn't deserve > this. > > evelyn > > > > > > > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > The Being Sick Community > > > Message Archives-/messages > > Chat:- Scheduled Chats at > /chat > > Bookmarks:- > Add a website URL you have found useful. > /links > > Personal Complaints or problems:- > Please contact a moderator > email: -owner > > Subscription Details:- > 1) Individual email - means that every email sent to the list you receive. > 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email. > 3) Web only/No mail - means that you can pop into groups at your > convenience and receive no email. > > To modify your subscription settings please visit:- > /join > > To subscribe or unsubscribe please email:- > -subscribe > -unsubscribe > > This group is not intended to diagnose or treat illnesses. No one on this > group is qualified to diagnose medical conditions. If you feel you need > medical attention, seek the advice of a qualified physician. > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > When nothing is sure, everything is possible. > > --- Margaret Drabble > > ~~~~ *** ~~~ *** ~~~ *** ~~~~ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Dear , So sorry to hear this. Is he going to be admitted? I hope things improve. I wish I had something more comforting to say. I will be praying for Gabe and you both. love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Im so sorry to hear about your son...I wish there was something I could do to make it better or atleast ease the pain....how old is he? Just remember that God loves you and somehow he will give you and your family the strength to handle it all.....you are in my thoughts and prayers....Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 , I am so so sorry about Gabe... Has he been put back into the hospital??? Know that my Prayers are with you and him always... I really know there is nothing I can say to make it any easier for you, just know that we are here for you and able to listen when your up to it... Keep your chin up high for him! He will know if Mommy's upset... ((( Prayerful Hugs ))) Helen well within the past week i have found out that my son has a mucus plug and decreased breath sounds in his right lung, a problem with diarhea, he lost 2.6 lbs and i found out yesterday that he has pseudomonas. i feel so lost. and so scared. he just doesn't deserve this.evelyn (V) (V) (V) (V) (V)\|/ \|/ \|/ \|/ \|/^^^^^^^^^^^^^^^^^^^ THINK SPRING !!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 Hi , I would love to send him a card, but please send me your address privately, you don't want to put it out over the airways where any one could get it... Maybe those on the list that would like to send him cards will ask you to send your address to them privately also... Just my 2 cents worth )! ((( Caring Hugs ))) Helen thanks so much for your kind thoughts for us. i never let the kids see when i am scared, sometimes i don't let anyone see. right now i just want to crumble but i can't i am supposed to be the strong one. currently he is not in the hospital. they have decided to treat him at home with two antibiotics for a month. in the mean time if he starts to feel worse they could admit him. i was thinking that i may post our address so that everyone could send him birthday cards. let me know what you guys think. thanks so much. evelyn (V) (V) (V) (V) (V)\|/ \|/ \|/ \|/ \|/^^^^^^^^^^^^^^^^^^^ THINK SPRING !!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 thanks so much for your kind thoughts for us. i never let the kids see when i am scared, sometimes i don't let anyone see. right now i just want to crumble but i can't i am supposed to be the strong one. currently he is not in the hospital. they have decided to treat him at home with two antibiotics for a month. in the mean time if he starts to feel worse they could admit him. i was thinking that i may post our address so that everyone could send him birthday cards. let me know what you guys think. thanks so much. evelynangelbear1129@... wrote: , I am so so sorry about Gabe... Has he been put back into the hospital??? Know that my Prayers are with you and him always... I really know there is nothing I can say to make it any easier for you, just know that we are here for you and able to listen when your up to it... Keep your chin up high for him! He will know if Mommy's upset... ((( Prayerful Hugs ))) Helen well within the past week i have found out that my son has a mucus plug and decreased breath sounds in his right lung, a problem with diarhea, he lost 2.6 lbs and i found out yesterday that he has pseudomonas. i feel so lost. and so scared. he just doesn't deserve this.evelyn (V) (V) (V) (V) (V)\|/ \|/ \|/ \|/ \|/^^^^^^^^^^^^^^^^^^^ THINK SPRING !!!) ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~ How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 thanks so much for praying for gabe. he is not going to be admitted. for now they are gonna treat him for a month with tobi aerosols and oral cipro. he is also mrsa positive, carries an overgrowth of yeast and h flu. i will keep you posted. thanks again. evelyn M <brenda.morey@...> wrote: Dear ,So sorry to hear this. Is he going to be admitted? I hope things improve. I wish I had something more comforting to say. I will be praying for Gabe and you both.love, ~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 thank you for keeping us in your thoughts and prayers. gabe is six and will be seven soon. i will keep you posted. evelynitsliz31@... wrote: Im so sorry to hear about your son...I wish there was something I could do to make it better or atleast ease the pain....how old is he? Just remember that God loves you and somehow he will give you and your family the strength to handle it all.....you are in my thoughts and prayers....Liz How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 they are always so aggressive when treating him. they will be treating with tobi and cipro. don't worry about your post not lifting me up right now. honestly i don't think anything could, i am completely scared. thanks so much i will keep you posted. evelyn & Lux <cklux@...> wrote: no, he doesn't deserve this, none of our little cf'ers do. That's what makes this whole disease so wretched! They didn't ask to be born carrying this burden. I'm sorry if this post isn't lifting you up, I just want to share in your pity for a moment and say I'm sorry. Are they planning to treat the PA aggressively? I don't know your history, but in our daughter's case we were able to eradicate the pseudomonis with a hospital stay and some follow up coly-mycin. I'm sure your doctors have the best treatment plan, but just wanted you to know that it wasn't the beginning of the end- as we'd once thought... many blessings to you today, completely devastated> well within the past week i have found out that my son has a mucus> plug and decreased breath sounds in his right lung, a problem with> diarhea, he lost 2.6 lbs and i found out yesterday that he has> pseudomonas. i feel so lost. and so scared. he just doesn't deserve> this.>> evelyn>>>>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Being Sick Community>>> Message Archives-/messages>> Chat:- Scheduled Chats at> /chat>> Bookmarks:-> Add a website URL you have found useful.> /links>> Personal Complaints or problems:-> Please contact a moderator> email: -owner >> Subscription Details:-> 1) Individual email - means that every email sent to the list you receive.> 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email.> 3) Web only/No mail - means that you can pop into groups at your > convenience and receive no email.>> To modify your subscription settings please visit:-> /join>> To subscribe or unsubscribe please email:-> -subscribe > -unsubscribe >> This group is not intended to diagnose or treat illnesses. No one on this > group is qualified to diagnose medical conditions. If you feel you need > medical attention, seek the advice of a qualified physician.> ~~~~ *** ~~~ *** ~~~ *** ~~~~> When nothing is sure, everything is possible.>> --- Margaret Drabble>> ~~~~ *** ~~~ *** ~~~ *** ~~~~>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2006 Report Share Posted April 6, 2006 My prayers are with you and your little one. When my daughter fell ill without warning... she was actually on the table, prepped to undergo a tonsillectomy, when they found she has severe pneumonia, that had it not been caught when it was she would have died within a week... or so they told me. Small things can sometimes be huge blessings in disguise... and if nothing else sharing with all of us so we can help share the burden and send prayers/blessings/positive energy.... Tamevelyn <peaches0106@...> wrote: they are always so aggressive when treating him. they will be treating with tobi and cipro. don't worry about your post not lifting me up right now. honestly i don't think anything could, i am completely scared. thanks so much i will keep you posted. evelyn & Lux <cklux@...> wrote: no, he doesn't deserve this, none of our little cf'ers do. That's what makes this whole disease so wretched! They didn't ask to be born carrying this burden. I'm sorry if this post isn't lifting you up, I just want to share in your pity for a moment and say I'm sorry. Are they planning to treat the PA aggressively? I don't know your history, but in our daughter's case we were able to eradicate the pseudomonis with a hospital stay and some follow up coly-mycin. I'm sure your doctors have the best treatment plan, but just wanted you to know that it wasn't the beginning of the end- as we'd once thought... many blessings to you today, completely devastated> well within the past week i have found out that my son has a mucus> plug and decreased breath sounds in his right lung, a problem with> diarhea, he lost 2.6 lbs and i found out yesterday that he has> pseudomonas. i feel so lost. and so scared. he just doesn't deserve> this.>> evelyn>>>>>>>> ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Being Sick Community>>> Message Archives-/messages>> Chat:- Scheduled Chats at> /chat>> Bookmarks:-> Add a website URL you have found useful.> /links>> Personal Complaints or problems:-> Please contact a moderator> email: -owner >> Subscription Details:-> 1) Individual email - means that every email sent to the list you receive.> 2) Daily Digest - sends you 25 messages in one single email for you to > browse. This is an excellent option if you receive alot of email.> 3) Web only/No mail - means that you can pop into groups at your > convenience and receive no email.>> To modify your subscription settings please visit:-> /join>> To subscribe or unsubscribe please email:-> -subscribe > -unsubscribe >> This group is not intended to diagnose or treat illnesses. No one on this > group is qualified to diagnose medical conditions. If you feel you need > medical attention, seek the advice of a qualified physician.> ~~~~ *** ~~~ *** ~~~ *** ~~~~> When nothing is sure, everything is possible.>> --- Margaret Drabble>> ~~~~ *** ~~~ *** ~~~ *** ~~~~>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Yes please send your address privately so I can send a card....I agree with the others you dont want to send that out in the open...might create you some seriously major problems.....I hope your son is feeling better.....it just breaks my heart to hear how sick he is....Im always so grateful that Im the one that is sick and not my children...my heart goes out to you and your family...please take good care.....always here to listen to hun if you need someone....Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 It is so hard with cystic fibrosis, some of the kids seem to have things so much worse than others. My daughter was sicker when she was younger and we did almost lose her once but since she has been about 15 she has been doing so well. I wish the same for Gabe and all the children. I can't really tell why is doing so much better. She used to culture pseudomonas from about age 2-12 but somehow it went away. She was on a lot of IV's from ages 11-13 or so. She cultures staph and stenotrophomonas maltophilia (don't worry about it Helen, it's just another bug cf'ers get). The S malto doesn't seem to give her much trouble but when she gets sick it's the staph and it's not mrsa so responds well to oral antibiotics. Keep us posted and I will keep praying for you both. love, Quote Link to comment Share on other sites More sharing options...
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