Guest guest Report post Posted September 29, 2002 > Hey , > Could you get what hospital is in...Jackie and I would like to > send her a card. Jackie talks to a little bit when they both > are feeling like being on the computer so Jackie wants to send her a > cheerful greeting. Thanks She is in Toumey Regional Medical Center in Sumter. I was not able to go today due to a family crisis of my own but plan on going in the morning. The address for the hospital is 129 N. Washington St. Sumter,SC 29150 shannon-SC Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 30, 2002 Hi , A cruise , what could be better medicine than that. I surely hope that you Pancreas hold up for you to make it. Becareful on what you eat from now till then. Hope your feeling good,] Take Care, Louie in WV Re: 6 weeks now , That is awesome. I was just telling someone it has been 10 days since I've been inthe hospital or ER. That's the longest I've been since this began for me AGAIN on July 18th. My mom, sis, and I are booked for a cruise with many of my online weight loss surgery friends. We fly to Ft Lauderdale on Oct 9th. I am just praying to be fine to go on the trip and through the trip. We have never been on a cruise and have never done a " just girls " vacation and my mom is so excited. My sis says no way would Mom go if I am too sick to go! I've got an appointment with the GI/biliary surgeon on Oct 21st, one week after I get back. I spoke with my GI today and he told me I am in very good hands with the surgeon I have been referred to. He still believes that my problems are being caused by some adhesions being pulled or twisted and causing things to block up, which then cause the horrible pain and sometimes causes my pancreas and liver enzymes to elevate so much. My GI thinks the reason the colonoscopy caused me such pain is that the air caused things in my stomach to expand and pull on the adhesions. He thinks the problem isn't really with the bile duct as my surgeon thinks. However, he said that the specialty surgeon I am going to is brilliant (and very nice) and that when he gets inside he will be able to determine if my problem is the bile duct or adhesions or maybe both and correct the problem and then I'll be fine! W. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted September 30, 2002 Hi , A cruise , what could be better medicine than that. I surely hope that you Pancreas hold up for you to make it. Becareful on what you eat from now till then. Hope your feeling good,] Take Care, Louie in WV Re: 6 weeks now , That is awesome. I was just telling someone it has been 10 days since I've been inthe hospital or ER. That's the longest I've been since this began for me AGAIN on July 18th. My mom, sis, and I are booked for a cruise with many of my online weight loss surgery friends. We fly to Ft Lauderdale on Oct 9th. I am just praying to be fine to go on the trip and through the trip. We have never been on a cruise and have never done a " just girls " vacation and my mom is so excited. My sis says no way would Mom go if I am too sick to go! I've got an appointment with the GI/biliary surgeon on Oct 21st, one week after I get back. I spoke with my GI today and he told me I am in very good hands with the surgeon I have been referred to. He still believes that my problems are being caused by some adhesions being pulled or twisted and causing things to block up, which then cause the horrible pain and sometimes causes my pancreas and liver enzymes to elevate so much. My GI thinks the reason the colonoscopy caused me such pain is that the air caused things in my stomach to expand and pull on the adhesions. He thinks the problem isn't really with the bile duct as my surgeon thinks. However, he said that the specialty surgeon I am going to is brilliant (and very nice) and that when he gets inside he will be able to determine if my problem is the bile duct or adhesions or maybe both and correct the problem and then I'll be fine! W. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 10, 2002 Thanks Kimber, I am going grocery shopping today, I hope. I will be looking for those water choices. She has been drinking water, though. She is a very good patient, she always tries to do what the doc says. I think we have a lightly flavored water at Walmart here. I will check there too. I will keep you posted, > , > Glaceau makes a lightly sweetened water called " fruit > water " . That may be possible for her to as it IS water, just > lightly flavored. You can usually find them at health food > stores or stores like " Raley's " or " Nob Hill " if you have > them out there. It might be another possible drink for > Jackie. Also, their " Smart Water " is good as it also has > electrolytes and minerals (also tastes good - at least to me > it does). > Kimber Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 10, 2002 Thanks Kimber, I am going grocery shopping today, I hope. I will be looking for those water choices. She has been drinking water, though. She is a very good patient, she always tries to do what the doc says. I think we have a lightly flavored water at Walmart here. I will check there too. I will keep you posted, > , > Glaceau makes a lightly sweetened water called " fruit > water " . That may be possible for her to as it IS water, just > lightly flavored. You can usually find them at health food > stores or stores like " Raley's " or " Nob Hill " if you have > them out there. It might be another possible drink for > Jackie. Also, their " Smart Water " is good as it also has > electrolytes and minerals (also tastes good - at least to me > it does). > Kimber Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 10, 2002 Thanks Kimber, I am going grocery shopping today, I hope. I will be looking for those water choices. She has been drinking water, though. She is a very good patient, she always tries to do what the doc says. I think we have a lightly flavored water at Walmart here. I will check there too. I will keep you posted, > , > Glaceau makes a lightly sweetened water called " fruit > water " . That may be possible for her to as it IS water, just > lightly flavored. You can usually find them at health food > stores or stores like " Raley's " or " Nob Hill " if you have > them out there. It might be another possible drink for > Jackie. Also, their " Smart Water " is good as it also has > electrolytes and minerals (also tastes good - at least to me > it does). > Kimber Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 13, 2002 In a message dated 10/8/2002 7:45:08 PM US Mountain Standard Time, pancreatitis writes: > Chuck, > > You deserve a good break. I'll never forget when you got the land, and went > > out to look around and start planning, had the heart situation, and then a > spin of a journey. You are a survivor! > > Remember that you can always just change to No mail, and you can just pop > in > to catch up on the archives. I would also like to see some pictures > sometime. > Cecilia soce@... Mesa, Arizona Arizona Chapter Representative Pancreatitis Association International http://pancassociation.org/storieshome.html Dear Chuck, Keep in touch. Cecilia Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 13, 2002 In a message dated 10/8/2002 7:45:08 PM US Mountain Standard Time, pancreatitis writes: > Chuck, > > You deserve a good break. I'll never forget when you got the land, and went > > out to look around and start planning, had the heart situation, and then a > spin of a journey. You are a survivor! > > Remember that you can always just change to No mail, and you can just pop > in > to catch up on the archives. I would also like to see some pictures > sometime. > Cecilia soce@... Mesa, Arizona Arizona Chapter Representative Pancreatitis Association International http://pancassociation.org/storieshome.html Dear Chuck, Keep in touch. Cecilia Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 13, 2002 In a message dated 10/8/2002 7:45:08 PM US Mountain Standard Time, pancreatitis writes: > Chuck, > > You deserve a good break. I'll never forget when you got the land, and went > > out to look around and start planning, had the heart situation, and then a > spin of a journey. You are a survivor! > > Remember that you can always just change to No mail, and you can just pop > in > to catch up on the archives. I would also like to see some pictures > sometime. > Cecilia soce@... Mesa, Arizona Arizona Chapter Representative Pancreatitis Association International http://pancassociation.org/storieshome.html Dear Chuck, Keep in touch. Cecilia Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 13, 2002 THANK you, thank you, thank you! How wonderful to meet you. You will be added to our list and I will be talking to you soon. The awareness group has great plans and dreams...and, of course no money! hehe Little sounds like a sweetie. I have a 6-year-old son, , with CF. He's more of a smart-alec now, but he used to say, " Why are you doing this? " (In reference to planning a skate night or a dinner or whatever) " Skate night won't help my lungs get better. " Broke my heart. Louise, you are going to hear more from me than possible you ever wanted! Thanks so much for your interest and energy. Lenora >Please, Please, Please, include my name on all and any list you have in >relation to the Awareness Campaign the list is heading up. I could act as >some sort of coordinator for the group as I have free time and a hunger to >bring attention to the plea for help in out the word about CF. Our tiny 5 >year old Granddaughter, was diagnosed at 19 months and continues her >battle with all her might. She often asks me, " Grammy can't you make >Cystic Fibrosis go away? " You know I may be able to make it go away by >getting more people interested in the fight and pour monies into research >and I know before to long, there will be a cure. >I do have experience with fund raising and have good organization skills >I'd like to put to work. Please let me know what you think and would you >be willing to work along side of me, who would like to work; it will >require alot of work, time and energy. I know by reading post lately there >are some people ready and willing to go for it. >Tight lines and strong knots, ><(((( " > > >Steve & Louise 27 Pinewood Drive, Topsham, Me 04086 >The Maine Outdoor Connection http://www.fishingnets.net/ > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 13, 2002 THANK you, thank you, thank you! How wonderful to meet you. You will be added to our list and I will be talking to you soon. The awareness group has great plans and dreams...and, of course no money! hehe Little sounds like a sweetie. I have a 6-year-old son, , with CF. He's more of a smart-alec now, but he used to say, " Why are you doing this? " (In reference to planning a skate night or a dinner or whatever) " Skate night won't help my lungs get better. " Broke my heart. Louise, you are going to hear more from me than possible you ever wanted! Thanks so much for your interest and energy. Lenora >Please, Please, Please, include my name on all and any list you have in >relation to the Awareness Campaign the list is heading up. I could act as >some sort of coordinator for the group as I have free time and a hunger to >bring attention to the plea for help in out the word about CF. Our tiny 5 >year old Granddaughter, was diagnosed at 19 months and continues her >battle with all her might. She often asks me, " Grammy can't you make >Cystic Fibrosis go away? " You know I may be able to make it go away by >getting more people interested in the fight and pour monies into research >and I know before to long, there will be a cure. >I do have experience with fund raising and have good organization skills >I'd like to put to work. Please let me know what you think and would you >be willing to work along side of me, who would like to work; it will >require alot of work, time and energy. I know by reading post lately there >are some people ready and willing to go for it. >Tight lines and strong knots, ><(((( " > > >Steve & Louise 27 Pinewood Drive, Topsham, Me 04086 >The Maine Outdoor Connection http://www.fishingnets.net/ > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 23, 2002 Dear Mark Perhaps your wife gets upset when she sees you are depressed and cant help you. Its easier to pick on the housework not done then to confront that your spouse is depressed. Also if she has just had surgery ( my niece has had the same surgery and lost over a hundred pounds since Jan.) she probably is still recovering and doesnt feel she can handle any more. If you truly love each other it will work out. from Canada Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 23, 2002 Dear Mark Perhaps your wife gets upset when she sees you are depressed and cant help you. Its easier to pick on the housework not done then to confront that your spouse is depressed. Also if she has just had surgery ( my niece has had the same surgery and lost over a hundred pounds since Jan.) she probably is still recovering and doesnt feel she can handle any more. If you truly love each other it will work out. from Canada Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 23, 2002 Dear Mark Perhaps your wife gets upset when she sees you are depressed and cant help you. Its easier to pick on the housework not done then to confront that your spouse is depressed. Also if she has just had surgery ( my niece has had the same surgery and lost over a hundred pounds since Jan.) she probably is still recovering and doesnt feel she can handle any more. If you truly love each other it will work out. from Canada Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 2002 Thank you for your post; let us hope that the " bug " is not PA!!!!!!!! High hopes en route! Love to you both, n Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 2002 Thank you for your post; let us hope that the " bug " is not PA!!!!!!!! High hopes en route! Love to you both, n Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 2002 Thank you for your post; let us hope that the " bug " is not PA!!!!!!!! High hopes en route! Love to you both, n Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 2002 Hi ! my daughter goes to Riley hospital in indy and i just love it there her doctor is Dr Howstein she is wonderful, but i have a question my husband and me have Deltaf508 gene thats what they said because thats what our daughter has now the question is does that mean she has double Deltaf508 or just one ? It might be a stupid question but i was just wondering?and another thing my daughter has pseudomonas the doctor dx it when she got dx with cf and mursa in her nose but they said it was colinized but it will always be there and they said she got that from being in and out of hopitals alot so now they have her on tobi with the neblizer to control the pseudomonas and it has work very well , she has been out of the hospital for 1year, i hope it will be a long time before she goes back,what my question is , is there more than one psudomonas like different types?/ sorry if i ask stupid question . thanks for anyone help karen mother of 3wcf Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 25, 2002 Hi ! my daughter goes to Riley hospital in indy and i just love it there her doctor is Dr Howstein she is wonderful, but i have a question my husband and me have Deltaf508 gene thats what they said because thats what our daughter has now the question is does that mean she has double Deltaf508 or just one ? It might be a stupid question but i was just wondering?and another thing my daughter has pseudomonas the doctor dx it when she got dx with cf and mursa in her nose but they said it was colinized but it will always be there and they said she got that from being in and out of hopitals alot so now they have her on tobi with the neblizer to control the pseudomonas and it has work very well , she has been out of the hospital for 1year, i hope it will be a long time before she goes back,what my question is , is there more than one psudomonas like different types?/ sorry if i ask stupid question . thanks for anyone help karen mother of 3wcf Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2002 , You're making me feel very bad now, I can't remember my niece's middle name !!!! My three girls have Irish names, I love them. Also my own name in Irish is Eilish. I don't know if its an exact translation but in primary school years ago, my name was Eilish de Faoite which was Ella White. Hope your little Eilish is doing well. Talk soon. Ella. For more information on the C&C Group visit http://www.candcgroupplc.com ********************************************************************** Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2002 Gracious, I am so honored. What a really lovely thought. Your too kind. That sounds ,like something I would really love too!! One of these days, I will just pop up there:):) It sounds like your special one is due for some " work " too. It makes it hard for the mommies & daddies with their concerns at times like these, to get in the mood for holidays , doesn't it. I think that is where we grandmomy's,etc are needed. I know you will be there for yours. I know that you will be loaded with info from these super list family members soon. I am at work full time & must get back on the road again in a few weeks. BUT I don't intend to do that during holidays, except Christmas for a few days .. Your really a busy gal yourself . till I pop in on you , Love & hugs, GrandmomBEV After struggling with weight gain or should I say lack of, 5 years old with CF is having a feeding tube placed on the 1th of November. The surgeon has not been very helpful (perhaps he can't be too specific)with questions like: What is the recovery like, how much pain, what types of pain meds., when can she go back to school, will there be stitches, will they need to be removed, is the mickey button done at the same time the feeding tube incision is made? Can any one help out here? Been there done that? We could use all your wisdom and ideas and tips. Thanks so much. so glad is recovering at last. Sounds like Grandmom Bev could use a break. How about a trip to Maine? I'd love to have you. It's quiet here. Seriously, you are welcomed here, but at least treat yourself to a nice hot tub and a good read. I missed you and am glad your back. Tight lines and strong knots, ><(((( " > Steve & Louise 27 Pinewood Drive, Topsham, Me 04086 The Maine Outdoor Connection http://www.fishingnets.net/ 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 Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2002 Louise, sorry to hear will be having surgery. It will be nice to see her put some weight on though I'm sure. Do you mind if I ask how much she weighs? Lori in Florida After struggling with weight gain or should I say lack of, 5 years old with CF is having a feeding tube placed on the 1th of November. The surgeon has not been very helpful (perhaps he can't be too specific)with questions like: What is the recovery like, how much pain, what types of pain meds., when can she go back to school, will there be stitches, will they need to be removed, is the mickey button done at the same time the feeding tube incision is made? Can any one help out here? Been there done that? We could use all your wisdom and ideas and tips. Thanks so much. so glad is recovering at last. Sounds like Grandmom Bev could use a break. How about a trip to Maine? I'd love to have you. It's quiet here. Seriously, you are welcomed here, but at least treat yourself to a nice hot tub and a good read. I missed you and am glad your back. Tight lines and strong knots, ><(((( " > Steve & Louise 27 Pinewood Drive, Topsham, Me 04086 The Maine Outdoor Connection http://www.fishingnets.net/ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2002 Hey, I can help with this. Emma had a G tube placed back in April (tax day to be exact). The initial surgery involved a stay over night. Emma slept a considerable amount the day of the surgery but was her normal self within 24 hours. I have no idea how much pain she was in. Emma is not a complainer and since she is only two, it's hard to ask her directly. Right away she immediately stopped bending over and started squatting down to pick things up. She didn't even seem to skip a beat. I did notice that when I picked her up that she would wince and would pick her up very carefully. None of this occurs anymore. Initially, they put a tube in with a cross bar pressed up against the skin. The purpose of the crossbar was to keep the tube at a 90 degree angle to the body and had to be turned several times a day in order to allow even wear on the site. I hated the initial tube because it stuck so far off her body. It made it hard to get clothes on her (overalls were definitely out). We had to keep the tube at 90 degrees to allow the site to heal properly. Uneven wear at the site could cause the tube or button to leak stomach fluids out of the hole so this was pretty important but it was hard to keep it at 90 degrees. Emma actually started with a JG tube which simply means that there were actually two tubes, one in side the other and the inner one went into her intestine and the outer one stopped in the stomach. This was done because she was vomiting so much that they wanted her night feeds to be put into the intestines rather than the stomach. This would help prevent her from throwing it up. The J part didn't last long as it stuck out further and she got it caught on things and pulled it out. The G part was fine. We had no problems with that at all. Six weeks after the initial placement she went back in and they removed the initial feeding tube and put in her mickey button. That was in July and was done without any anesthesia, in and out within a half hour or so. Emma didn't enjoy this but they said it was more an issue of comfort than of pain. She didn't like them fooling around with the site but they indicated there was no pain involved. Emma's biggest problem with the G tube has been granulomas but these problems didn't occur until after she got the mickey button. Granulomas are essentially scar tissue that grows up out of the hole. With Emma, the button pressed on the granuloma and it would actually bleed. Usually it was only a little bit around the site but a few times it was pretty bad. Her site was really sore for quite a while due to the granulomas. We finally got them cleared up using a steroid cream. There are no stitches, just a little hole. If you have any other questions, just let me know. - mom to Isabelle 4 years old wo/cf and Emma 2 years old w/cf, reflux and G tube On Wed, 30 Oct 2002 18:28:17 -0500 Steve & Louise lmartin@...> writes: > > > After struggling with weight gain or should I say lack of, 5 > years > old with CF is having a feeding tube placed on the 1th of November. > The > surgeon has not been very helpful (perhaps he can't be too > specific)with > questions like: What is the recovery like, how much pain, what types > of > pain meds., when can she go back to school, will there be stitches, > will > they need to be removed, is the mickey button done at the same time > the > feeding tube incision is made? Can any one help out here? Been > there done > that? We could use all your wisdom and ideas and tips. Thanks so > much. > so glad is recovering at last. Sounds like Grandmom Bev could > use a > break. How about a trip to Maine? I'd love to have you. It's > quiet > here. Seriously, you are welcomed here, but at least treat yourself > to a > nice hot tub and a good read. > I missed you and am glad your back. > > Tight lines and strong knots, ><(((( " > > > Steve & Louise 27 Pinewood Drive, Topsham, Me 04086 > The Maine Outdoor Connection http://www.fishingnets.net/ > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2002 Hey, I can help with this. Emma had a G tube placed back in April (tax day to be exact). The initial surgery involved a stay over night. Emma slept a considerable amount the day of the surgery but was her normal self within 24 hours. I have no idea how much pain she was in. Emma is not a complainer and since she is only two, it's hard to ask her directly. Right away she immediately stopped bending over and started squatting down to pick things up. She didn't even seem to skip a beat. I did notice that when I picked her up that she would wince and would pick her up very carefully. None of this occurs anymore. Initially, they put a tube in with a cross bar pressed up against the skin. The purpose of the crossbar was to keep the tube at a 90 degree angle to the body and had to be turned several times a day in order to allow even wear on the site. I hated the initial tube because it stuck so far off her body. It made it hard to get clothes on her (overalls were definitely out). We had to keep the tube at 90 degrees to allow the site to heal properly. Uneven wear at the site could cause the tube or button to leak stomach fluids out of the hole so this was pretty important but it was hard to keep it at 90 degrees. Emma actually started with a JG tube which simply means that there were actually two tubes, one in side the other and the inner one went into her intestine and the outer one stopped in the stomach. This was done because she was vomiting so much that they wanted her night feeds to be put into the intestines rather than the stomach. This would help prevent her from throwing it up. The J part didn't last long as it stuck out further and she got it caught on things and pulled it out. The G part was fine. We had no problems with that at all. Six weeks after the initial placement she went back in and they removed the initial feeding tube and put in her mickey button. That was in July and was done without any anesthesia, in and out within a half hour or so. Emma didn't enjoy this but they said it was more an issue of comfort than of pain. She didn't like them fooling around with the site but they indicated there was no pain involved. Emma's biggest problem with the G tube has been granulomas but these problems didn't occur until after she got the mickey button. Granulomas are essentially scar tissue that grows up out of the hole. With Emma, the button pressed on the granuloma and it would actually bleed. Usually it was only a little bit around the site but a few times it was pretty bad. Her site was really sore for quite a while due to the granulomas. We finally got them cleared up using a steroid cream. There are no stitches, just a little hole. If you have any other questions, just let me know. - mom to Isabelle 4 years old wo/cf and Emma 2 years old w/cf, reflux and G tube On Wed, 30 Oct 2002 18:28:17 -0500 Steve & Louise lmartin@...> writes: > > > After struggling with weight gain or should I say lack of, 5 > years > old with CF is having a feeding tube placed on the 1th of November. > The > surgeon has not been very helpful (perhaps he can't be too > specific)with > questions like: What is the recovery like, how much pain, what types > of > pain meds., when can she go back to school, will there be stitches, > will > they need to be removed, is the mickey button done at the same time > the > feeding tube incision is made? Can any one help out here? Been > there done > that? We could use all your wisdom and ideas and tips. Thanks so > much. > so glad is recovering at last. Sounds like Grandmom Bev could > use a > break. How about a trip to Maine? I'd love to have you. It's > quiet > here. Seriously, you are welcomed here, but at least treat yourself > to a > nice hot tub and a good read. > I missed you and am glad your back. > > Tight lines and strong knots, ><(((( " > > > Steve & Louise 27 Pinewood Drive, Topsham, Me 04086 > The Maine Outdoor Connection http://www.fishingnets.net/ > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 30, 2002 Hey, I can help with this. Emma had a G tube placed back in April (tax day to be exact). The initial surgery involved a stay over night. Emma slept a considerable amount the day of the surgery but was her normal self within 24 hours. I have no idea how much pain she was in. Emma is not a complainer and since she is only two, it's hard to ask her directly. Right away she immediately stopped bending over and started squatting down to pick things up. She didn't even seem to skip a beat. I did notice that when I picked her up that she would wince and would pick her up very carefully. None of this occurs anymore. Initially, they put a tube in with a cross bar pressed up against the skin. The purpose of the crossbar was to keep the tube at a 90 degree angle to the body and had to be turned several times a day in order to allow even wear on the site. I hated the initial tube because it stuck so far off her body. It made it hard to get clothes on her (overalls were definitely out). We had to keep the tube at 90 degrees to allow the site to heal properly. Uneven wear at the site could cause the tube or button to leak stomach fluids out of the hole so this was pretty important but it was hard to keep it at 90 degrees. Emma actually started with a JG tube which simply means that there were actually two tubes, one in side the other and the inner one went into her intestine and the outer one stopped in the stomach. This was done because she was vomiting so much that they wanted her night feeds to be put into the intestines rather than the stomach. This would help prevent her from throwing it up. The J part didn't last long as it stuck out further and she got it caught on things and pulled it out. The G part was fine. We had no problems with that at all. Six weeks after the initial placement she went back in and they removed the initial feeding tube and put in her mickey button. That was in July and was done without any anesthesia, in and out within a half hour or so. Emma didn't enjoy this but they said it was more an issue of comfort than of pain. She didn't like them fooling around with the site but they indicated there was no pain involved. Emma's biggest problem with the G tube has been granulomas but these problems didn't occur until after she got the mickey button. Granulomas are essentially scar tissue that grows up out of the hole. With Emma, the button pressed on the granuloma and it would actually bleed. Usually it was only a little bit around the site but a few times it was pretty bad. Her site was really sore for quite a while due to the granulomas. We finally got them cleared up using a steroid cream. There are no stitches, just a little hole. If you have any other questions, just let me know. - mom to Isabelle 4 years old wo/cf and Emma 2 years old w/cf, reflux and G tube On Wed, 30 Oct 2002 18:28:17 -0500 Steve & Louise lmartin@...> writes: > > > After struggling with weight gain or should I say lack of, 5 > years > old with CF is having a feeding tube placed on the 1th of November. > The > surgeon has not been very helpful (perhaps he can't be too > specific)with > questions like: What is the recovery like, how much pain, what types > of > pain meds., when can she go back to school, will there be stitches, > will > they need to be removed, is the mickey button done at the same time > the > feeding tube incision is made? Can any one help out here? Been > there done > that? We could use all your wisdom and ideas and tips. Thanks so > much. > so glad is recovering at last. Sounds like Grandmom Bev could > use a > break. How about a trip to Maine? I'd love to have you. It's > quiet > here. Seriously, you are welcomed here, but at least treat yourself > to a > nice hot tub and a good read. > I missed you and am glad your back. > > Tight lines and strong knots, ><(((( " > > > Steve & Louise 27 Pinewood Drive, Topsham, Me 04086 > The Maine Outdoor Connection http://www.fishingnets.net/ > > > Quote Share this post Link to post Share on other sites
