Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 As long as your daughter is tolerating that speed (not gagging, vomiting, etc) it should be fine. There's really not a right or wrong answer. My daughter (2) gets 180ml pumped in over about 45 minutes, if we go much faster she starts gagging. Every kiddo's different! To: polymicrogyria@...: b_chlo@...: Sun, 10 Dec 2006 19:32:45 +0000Subject: Gastrostmy feeding Hi to all of you old hands out there.Our daughter has just (2 days ago) had a g-tube fitted.What I want to know is how quick a 150ml feed should take.Is a few minutes OK, or is this too quick? Or can it be too quick?Dom, Chloe's dad, difuse bi-lat pmg _________________________________________________________________ Express yourself with gadgets on Windows Live Spaces http://discoverspaces.live.com?source=hmtag1 & loc=us Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 got his G-Tube at 5. At first he ate within 20 minutes, then slowly he just couldn't handle it. We had slowed down to 250ml over 2 hours. We are now working back up to a much shorter feed. We are now at about 1 1/2 hours to eat 250ml. did end up having the Nissen Fundoplication procedure about a year after the G-Tube was placed. The G-Tube is still the best thing we ever did for him. We are happy and he is even happier. b_chlo wrote: Hi to all of you old hands out there. Our daughter has just (2 days ago) had a g-tube fitted. What I want to know is how quick a 150ml feed should take. Is a few minutes OK, or is this too quick? Or can it be too quick? Dom, Chloe's dad, difuse bi-lat pmg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2006 Report Share Posted December 10, 2006 Dom, I think that the other replies covered this, but I wanted to say it too. It's really up to your kid with how fast or slow you need to go. Owen got his at six months and mom was really good at it. It seemed like every time that I would try he would puke (no fundo here which is good some times.). Right now we are mostly using the tube for water at night and we are going 180/270 and my wife wanted me to stress that this is with water and that Owen can not handle that speed with formula. I hope that you little one doesn't have to be on the tube for too long but this pump, with the backback changed our lives: http://www.zevex.com/therapeutics/pumps/infinity.cfm Best, -Glenn Gastrostmy feeding Hi to all of you old hands out there. Our daughter has just (2 days ago) had a g-tube fitted. What I want to know is how quick a 150ml feed should take. Is a few minutes OK, or is this too quick? Or can it be too quick? Dom, Chloe's dad, difuse bi-lat pmg ________________________________________________________________________________\ ____ Want to start your own business? Learn how on Yahoo! Small Business. http://smallbusiness.yahoo.com/r-index Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 Hi, Finlay had his g-tube fiited at the age of 2.5years old. He has always had bolus feeds and I give him 200 ml of milk and 60 ml of water over just a few minutes (the time it takes to get the milk in the syringes and gently push it through) 3 times a day. Finlay can take this and generally has no reflux, unless he is unwell. When he is having trouble I reduce the feeds to 100 ml + 60 ml of water 6 times a day. Some children have to get the feed very slowly, some like Finlay can take it very fast. You will have to find out what works best for your daughter. Good luck Annelies Gastrostmy feeding Hi to all of you old hands out there. Our daughter has just (2 days ago) had a g-tube fitted. What I want to know is how quick a 150ml feed should take. Is a few minutes OK, or is this too quick? Or can it be too quick? Dom, Chloe's dad, difuse bi-lat pmg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2006 Report Share Posted December 11, 2006 If her stomach is completely empty then a few minutes for it to go in is OK so long as you are letting the formula go in with gravity and not using a syringe to push it into the stomach. Gastrostmy feeding Hi to all of you old hands out there. Our daughter has just (2 days ago) had a g-tube fitted. What I want to know is how quick a 150ml feed should take. Is a few minutes OK, or is this too quick? Or can it be too quick? Dom, Chloe's dad, difuse bi-lat pmg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2007 Report Share Posted February 19, 2007 How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 I know what you mean. I have learned to give the 'short' version of 's medical history. I also carry an " Info Folder: with 's name and a big red X on it just in case I can't talk or too upset to remember everything. It has the current meds/medical history/Allergies/ Medical Contacts List/Feeding schedule/insurance information/Letter of Intent/family phone list. I am the Queen of Worry. I just want to have everything available should I not be there to speak for . I even have one of these 'Info Folders' in 's school backpack. I like to have all bases covered. My hubby said I would make a good girl scout, always prepared. Whenever is in the hospital we never leave him alone. We monitor everything given because the evening after his G-Tube surgery they were trying to give him Morphine (ALLERGIC) for pain. sigh.............Hubby takes the day shift, I take the night shift. They nicknamed us 'The parents that never leave " . I knowl I am 's voice/lifeline. Our Pediatrician even asks our opinion. He knows we know better than he could. If we have to see an On Call Physician I sometimes see their eyes glaze over with all the info I present them. Luckily for us is very healthy considering everything he has going on. Re: Re: Gastrostmy feeding We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 We absolutely never leave 's side in the hospital either. It gets tricky since I have an 11 year old and 6 year old at home.. but usually I do 90% hospital duty... typically...family members come to our home to help, and hubby and I take shifts, but honestly.. my husband is a darling...but he leaves most of the information giving to me... I am a bit of control freak, but like yourself, I worry as well... I am curious about orthopedically..has he had any problems with his hips or spine? Gpeach3 wrote: I know what you mean. I have learned to give the 'short' version of 's medical history. I also carry an " Info Folder: with 's name and a big red X on it just in case I can't talk or too upset to remember everything. It has the current meds/medical history/Allergies/ Medical Contacts List/Feeding schedule/insurance information/Letter of Intent/family phone list. I am the Queen of Worry. I just want to have everything available should I not be there to speak for . I even have one of these 'Info Folders' in 's school backpack. I like to have all bases covered. My hubby said I would make a good girl scout, always prepared. Whenever is in the hospital we never leave him alone. We monitor everything given because the evening after his G-Tube surgery they were trying to give him Morphine (ALLERGIC) for pain. sigh.............Hubby takes the day shift, I take the night shift. They nicknamed us 'The parents that never leave " . I knowl I am 's voice/lifeline. Our Pediatrician even asks our opinion. He knows we know better than he could. If we have to see an On Call Physician I sometimes see their eyes glaze over with all the info I present them. Luckily for us is very healthy considering everything he has going on. Re: Re: Gastrostmy feeding We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 was orginally seen at Shriners for scoliosis every 6 months and is now seen once a year for a 'watch'. He also has dislocated hips. They do not want to do surgery unless is in pain. We just started Botox in his hamstrings and wrists. He was starting to get contractures in his knees. 's favorite sleeping postion was curled up like a ball. We now have great knee splints for sleep and so so ones for daytime while lounging. We will try botox again in March. How about ? Re: Re: Gastrostmy feeding We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 had double hip osteotomy surgery in January of 2004.. his hips were narrow, and then the right hip came out of socket. It was causing him obvious pain... He sees both an orthpedic specialist as well as a pediatric physiatrist.. the Physiatrist has him on baclofen because he started having wicked muscle spasms about the same time as the hips went bad. We have had success with botox to release the spasticity in his hamstrings. HIs spinal x rays have been perfect, but the hips are a continued source of concern. He sees a great Orthopedic doctor at Yale New Haven Hospital...and thankfully the hip surgery has not reversed it self. They tell me, however, that repeat surgery can not be ruled out because his hip is starting to be slightly sublaxated again. The orthopedic surgery was definately far more traumatic than the Nissen Fundo.. because orthopedic surgery is always painful no matter who you are. He has great big knobby knees, and is so skinny.. compared to my other husky son... it is strange. My 6 year old weights 30 pounds more than his 9 year old brother. I have to say there was signigicant improvement in his abilities post hip surgery...but 6 of one, half dozen of the other... now we have tremendous spasms... not sure if that is related or not, but the spasms started around the same time. He is driving me crazy with the crying and congestion... and what makes it worse is he has laughing spells, crying spells, intermittently. Makes me crazy. Take care.... Gpeach3 wrote: was orginally seen at Shriners for scoliosis every 6 months and is now seen once a year for a 'watch'. He also has dislocated hips. They do not want to do surgery unless is in pain. We just started Botox in his hamstrings and wrists. He was starting to get contractures in his knees. 's favorite sleeping postion was curled up like a ball. We now have great knee splints for sleep and so so ones for daytime while lounging. We will try botox again in March. How about ? Re: Re: Gastrostmy feeding We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 Oh.. we also splint one leg at night when he sleeps.. he likes to curl up as well, but he gets really tight and I have to unfold him like a pretzel sometimes. Splinting one leg, alternating each night has been enough to keep him from curling in... interesting that you splint at night as well... JULIE HASSELBERGER wrote: had double hip osteotomy surgery in January of 2004.. his hips were narrow, and then the right hip came out of socket. It was causing him obvious pain... He sees both an orthpedic specialist as well as a pediatric physiatrist.. the Physiatrist has him on baclofen because he started having wicked muscle spasms about the same time as the hips went bad. We have had success with botox to release the spasticity in his hamstrings. HIs spinal x rays have been perfect, but the hips are a continued source of concern. He sees a great Orthopedic doctor at Yale New Haven Hospital...and thankfully the hip surgery has not reversed it self. They tell me, however, that repeat surgery can not be ruled out because his hip is starting to be slightly sublaxated again. The orthopedic surgery was definately far more traumatic than the Nissen Fundo.. because orthopedic surgery is always painful no matter who you are. He has great big knobby knees, and is so skinny.. compared to my other husky son... it is strange. My 6 year old weights 30 pounds more than his 9 year old brother. I have to say there was signigicant improvement in his abilities post hip surgery...but 6 of one, half dozen of the other... now we have tremendous spasms... not sure if that is related or not, but the spasms started around the same time. He is driving me crazy with the crying and congestion... and what makes it worse is he has laughing spells, crying spells, intermittently. Makes me crazy. Take care.... Gpeach3 wrote: was orginally seen at Shriners for scoliosis every 6 months and is now seen once a year for a 'watch'. He also has dislocated hips. They do not want to do surgery unless is in pain. We just started Botox in his hamstrings and wrists. He was starting to get contractures in his knees. 's favorite sleeping postion was curled up like a ball. We now have great knee splints for sleep and so so ones for daytime while lounging. We will try botox again in March. How about ? Re: Re: Gastrostmy feeding We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2007 Report Share Posted February 22, 2007 Hmmm. I wonder if 's Specialists would agree that could have alternate leg splinting. It is really hard to flip him over (he can't do it on his own) when he is facing away from me. The new leg splints are framed in hard plastic but work fantastic. also has the big nobby knees. He weighs 51 lbs but is also very tall so he looks so skinny. Thanks for sharing about . He really does sound like in so many ways. Take care, Sharon T. JULIE HASSELBERGER wrote: Oh.. we also splint one leg at night when he sleeps.. he likes to curl up as well, but he gets really tight and I have to unfold him like a pretzel sometimes. Splinting one leg, alternating each night has been enough to keep him from curling in... interesting that you splint at night as well... JULIE HASSELBERGER wrote: had double hip osteotomy surgery in January of 2004.. his hips were narrow, and then the right hip came out of socket. It was causing him obvious pain... He sees both an orthpedic specialist as well as a pediatric physiatrist.. the Physiatrist has him on baclofen because he started having wicked muscle spasms about the same time as the hips went bad. We have had success with botox to release the spasticity in his hamstrings. HIs spinal x rays have been perfect, but the hips are a continued source of concern. He sees a great Orthopedic doctor at Yale New Haven Hospital...and thankfully the hip surgery has not reversed it self. They tell me, however, that repeat surgery can not be ruled out because his hip is starting to be slightly sublaxated again. The orthopedic surgery was definately far more traumatic than the Nissen Fundo.. because orthopedic surgery is always painful no matter who you are. He has great big knobby knees, and is so skinny.. compared to my other husky son... it is strange. My 6 year old weights 30 pounds more than his 9 year old brother. I have to say there was signigicant improvement in his abilities post hip surgery...but 6 of one, half dozen of the other... now we have tremendous spasms... not sure if that is related or not, but the spasms started around the same time. He is driving me crazy with the crying and congestion... and what makes it worse is he has laughing spells, crying spells, intermittently. Makes me crazy. Take care.... Gpeach3 wrote: was orginally seen at Shriners for scoliosis every 6 months and is now seen once a year for a 'watch'. He also has dislocated hips. They do not want to do surgery unless is in pain. We just started Botox in his hamstrings and wrists. He was starting to get contractures in his knees. 's favorite sleeping postion was curled up like a ball. We now have great knee splints for sleep and so so ones for daytime while lounging. We will try botox again in March. How about ? Re: Re: Gastrostmy feeding We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 You could try it one night, straightens out both when just one is splinted...it must feel more comfortable. But who knows what the muscle tone will do. I hate the skinny little boy... and do you ever wonder or think about puberty being around the corner..and the growth changes that will happen? My daughter matured young... had her period at age 10..so sometimes I wonder what will go through. I imagine it is harder with girls...all of the changes... but because is so skinny... and growing... I can't imagine what raging hormones are going to do to him. I hear that the seizures can change dramatically. Perhaps that is premature worry huh? Knobby knees, skinny skinny body.. and sweet absolutely perfect little feet that have never calloused or gotten stained with mud. Take care. Sharon wrote: Hmmm. I wonder if 's Specialists would agree that could have alternate leg splinting. It is really hard to flip him over (he can't do it on his own) when he is facing away from me. The new leg splints are framed in hard plastic but work fantastic. also has the big nobby knees. He weighs 51 lbs but is also very tall so he looks so skinny. Thanks for sharing about . He really does sound like in so many ways. Take care, Sharon T. JULIE HASSELBERGER wrote: Oh.. we also splint one leg at night when he sleeps.. he likes to curl up as well, but he gets really tight and I have to unfold him like a pretzel sometimes. Splinting one leg, alternating each night has been enough to keep him from curling in... interesting that you splint at night as well... JULIE HASSELBERGER wrote: had double hip osteotomy surgery in January of 2004.. his hips were narrow, and then the right hip came out of socket. It was causing him obvious pain... He sees both an orthpedic specialist as well as a pediatric physiatrist.. the Physiatrist has him on baclofen because he started having wicked muscle spasms about the same time as the hips went bad. We have had success with botox to release the spasticity in his hamstrings. HIs spinal x rays have been perfect, but the hips are a continued source of concern. He sees a great Orthopedic doctor at Yale New Haven Hospital...and thankfully the hip surgery has not reversed it self. They tell me, however, that repeat surgery can not be ruled out because his hip is starting to be slightly sublaxated again. The orthopedic surgery was definately far more traumatic than the Nissen Fundo.. because orthopedic surgery is always painful no matter who you are. He has great big knobby knees, and is so skinny.. compared to my other husky son... it is strange. My 6 year old weights 30 pounds more than his 9 year old brother. I have to say there was signigicant improvement in his abilities post hip surgery...but 6 of one, half dozen of the other... now we have tremendous spasms... not sure if that is related or not, but the spasms started around the same time. He is driving me crazy with the crying and congestion... and what makes it worse is he has laughing spells, crying spells, intermittently. Makes me crazy. Take care.... Gpeach3 wrote: was orginally seen at Shriners for scoliosis every 6 months and is now seen once a year for a 'watch'. He also has dislocated hips. They do not want to do surgery unless is in pain. We just started Botox in his hamstrings and wrists. He was starting to get contractures in his knees. 's favorite sleeping postion was curled up like a ball. We now have great knee splints for sleep and so so ones for daytime while lounging. We will try botox again in March. How about ? Re: Re: Gastrostmy feeding We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 You could try it one night, straightens out both when just one is splinted...it must feel more comfortable. But who knows what the muscle tone will do. I hate the skinny little boy... and do you ever wonder or think about puberty being around the corner..and the growth changes that will happen? My daughter matured young... had her period at age 10..so sometimes I wonder what will go through. I imagine it is harder with girls...all of the changes... but because is so skinny... and growing... I can't imagine what raging hormones are going to do to him. I hear that the seizures can change dramatically. Perhaps that is premature worry huh? Knobby knees, skinny skinny body.. and sweet absolutely perfect little feet that have never calloused or gotten stained with mud. Take care. Sharon wrote: Hmmm. I wonder if 's Specialists would agree that could have alternate leg splinting. It is really hard to flip him over (he can't do it on his own) when he is facing away from me. The new leg splints are framed in hard plastic but work fantastic. also has the big nobby knees. He weighs 51 lbs but is also very tall so he looks so skinny. Thanks for sharing about . He really does sound like in so many ways. Take care, Sharon T. JULIE HASSELBERGER wrote: Oh.. we also splint one leg at night when he sleeps.. he likes to curl up as well, but he gets really tight and I have to unfold him like a pretzel sometimes. Splinting one leg, alternating each night has been enough to keep him from curling in... interesting that you splint at night as well... JULIE HASSELBERGER wrote: had double hip osteotomy surgery in January of 2004.. his hips were narrow, and then the right hip came out of socket. It was causing him obvious pain... He sees both an orthpedic specialist as well as a pediatric physiatrist.. the Physiatrist has him on baclofen because he started having wicked muscle spasms about the same time as the hips went bad. We have had success with botox to release the spasticity in his hamstrings. HIs spinal x rays have been perfect, but the hips are a continued source of concern. He sees a great Orthopedic doctor at Yale New Haven Hospital...and thankfully the hip surgery has not reversed it self. They tell me, however, that repeat surgery can not be ruled out because his hip is starting to be slightly sublaxated again. The orthopedic surgery was definately far more traumatic than the Nissen Fundo.. because orthopedic surgery is always painful no matter who you are. He has great big knobby knees, and is so skinny.. compared to my other husky son... it is strange. My 6 year old weights 30 pounds more than his 9 year old brother. I have to say there was signigicant improvement in his abilities post hip surgery...but 6 of one, half dozen of the other... now we have tremendous spasms... not sure if that is related or not, but the spasms started around the same time. He is driving me crazy with the crying and congestion... and what makes it worse is he has laughing spells, crying spells, intermittently. Makes me crazy. Take care.... Gpeach3 wrote: was orginally seen at Shriners for scoliosis every 6 months and is now seen once a year for a 'watch'. He also has dislocated hips. They do not want to do surgery unless is in pain. We just started Botox in his hamstrings and wrists. He was starting to get contractures in his knees. 's favorite sleeping postion was curled up like a ball. We now have great knee splints for sleep and so so ones for daytime while lounging. We will try botox again in March. How about ? Re: Re: Gastrostmy feeding We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 We make a big deal when does something good as a source of positive reinforcement. He usually seems to understand and tries a little harder to get the reaction. Especially when he is working on his tummy time and gets his hands in front of himself and tries to lift himself up. Although we had to laugh when in Church Sunday the Pastor recognized the new members to the church and the congregation clapped. who was trying very hard at the time to pass a toy from one hand to his other heard the clapping. He lifted his head up and smiled like the applause was most definitely meant for him and he must acknowledge it. I wouldn't trade those smiles for the world. I wish you all many of those smiles from your children. Annette Hi to all of you old hands out > there. > > Our daughter has just (2 days ago) had a g-tube fitted. > > What I want to know is how quick a 150ml feed should take. > > Is a few minutes OK, or is this too quick? Or can it be too quick? > > > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 How old is your son? luvthebuckii wrote: We make a big deal when does something good as a source of positive reinforcement. He usually seems to understand and tries a little harder to get the reaction. Especially when he is working on his tummy time and gets his hands in front of himself and tries to lift himself up. Although we had to laugh when in Church Sunday the Pastor recognized the new members to the church and the congregation clapped. who was trying very hard at the time to pass a toy from one hand to his other heard the clapping. He lifted his head up and smiled like the applause was most definitely meant for him and he must acknowledge it. I wouldn't trade those smiles for the world. I wish you all many of those smiles from your children. Annette Hi to all of you old hands out > there. > > Our daughter has just (2 days ago) had a g-tube fitted. > > What I want to know is how quick a 150ml feed should take. > > Is a few minutes OK, or is this too quick? Or can it be too quick? > > > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 is 15 months old. Bad news today. The PT that we adore is leaving. She has been our main source of stability through 's diagnosis and has been a tremendous source of info. I am so sad to see her go. It seems like anytime I think we are starting to get into a routine with some sense of normalcy the rug is pulled out from under us. UGH!!!! Hi to all of you old hands out > > there. > > > Our daughter has just (2 days ago) had a g-tube fitted. > > > What I want to know is how quick a 150ml feed should take. > > > Is a few minutes OK, or is this too quick? Or can it be too > quick? > > > > > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2007 Report Share Posted February 23, 2007 I can't wait to try splinting one leg! I told my hubby about your splintiing idea and he said " Another one of those Duh moments " . I am so grateful for this list because I have learned so much. and puberty are right around the corner. He turns 10 this Sunday and we are seeing a lot of blonde peach fuzz on his face and his legs are fuzzy too. eeek. His seizures have changed and I am sure it is because he is starting to go through puberty. I was just playing with 's 'perfect little feet' on the airplane today. I was wondering if anyone else did the same. Sounds like you see in the same light I see , perfect. I always have volunteers for his outgrown shoes because his feet never touch the ground. JULIE HASSELBERGER wrote: You could try it one night, straightens out both when just one is splinted...it must feel more comfortable. But who knows what the muscle tone will do. I hate the skinny little boy... and do you ever wonder or think about puberty being around the corner..and the growth changes that will happen? My daughter matured young... had her period at age 10..so sometimes I wonder what will go through. I imagine it is harder with girls...all of the changes... but because is so skinny... and growing... I can't imagine what raging hormones are going to do to him. I hear that the seizures can change dramatically. Perhaps that is premature worry huh? Knobby knees, skinny skinny body.. and sweet absolutely perfect little feet that have never calloused or gotten stained with mud. Take care. Sharon wrote: Hmmm. I wonder if 's Specialists would agree that could have alternate leg splinting. It is really hard to flip him over (he can't do it on his own) when he is facing away from me. The new leg splints are framed in hard plastic but work fantastic. also has the big nobby knees. He weighs 51 lbs but is also very tall so he looks so skinny. Thanks for sharing about . He really does sound like in so many ways. Take care, Sharon T. JULIE HASSELBERGER wrote: Oh.. we also splint one leg at night when he sleeps.. he likes to curl up as well, but he gets really tight and I have to unfold him like a pretzel sometimes. Splinting one leg, alternating each night has been enough to keep him from curling in... interesting that you splint at night as well... JULIE HASSELBERGER wrote: had double hip osteotomy surgery in January of 2004.. his hips were narrow, and then the right hip came out of socket. It was causing him obvious pain... He sees both an orthpedic specialist as well as a pediatric physiatrist.. the Physiatrist has him on baclofen because he started having wicked muscle spasms about the same time as the hips went bad. We have had success with botox to release the spasticity in his hamstrings. HIs spinal x rays have been perfect, but the hips are a continued source of concern. He sees a great Orthopedic doctor at Yale New Haven Hospital...and thankfully the hip surgery has not reversed it self. They tell me, however, that repeat surgery can not be ruled out because his hip is starting to be slightly sublaxated again. The orthopedic surgery was definately far more traumatic than the Nissen Fundo.. because orthopedic surgery is always painful no matter who you are. He has great big knobby knees, and is so skinny.. compared to my other husky son... it is strange. My 6 year old weights 30 pounds more than his 9 year old brother. I have to say there was signigicant improvement in his abilities post hip surgery...but 6 of one, half dozen of the other... now we have tremendous spasms... not sure if that is related or not, but the spasms started around the same time. He is driving me crazy with the crying and congestion... and what makes it worse is he has laughing spells, crying spells, intermittently. Makes me crazy. Take care.... Gpeach3 wrote: was orginally seen at Shriners for scoliosis every 6 months and is now seen once a year for a 'watch'. He also has dislocated hips. They do not want to do surgery unless is in pain. We just started Botox in his hamstrings and wrists. He was starting to get contractures in his knees. 's favorite sleeping postion was curled up like a ball. We now have great knee splints for sleep and so so ones for daytime while lounging. We will try botox again in March. How about ? Re: Re: Gastrostmy feeding We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2007 Report Share Posted February 24, 2007 Yes.. the sweet little shoes, 's shoe size is barely a size 1... his BIG little brother doesnt benefit from hand me downs.. it goes the other way. I have a giant bin full of shoes waiting for ..because his brother goes through growth spurts.. actually, its funny because many of the shoes are worn a bit, and when I put them on seeing him in shoes that are worn is kind of strange. We have the same problem with clothing. is swimming in size 7.. (3 years younger) is a size 10/12... My poor husband is so confused with " whose is whose " in the laundry...lol. I am mentally and physically exhausted.. he was up until 3:30 am ... yesterday he was wretching significantly and I have had to slow the feeds down. UGGG we coin the phrase " will we ever catch a break " Sharon wrote: I can't wait to try splinting one leg! I told my hubby about your splintiing idea and he said " Another one of those Duh moments " . I am so grateful for this list because I have learned so much. and puberty are right around the corner. He turns 10 this Sunday and we are seeing a lot of blonde peach fuzz on his face and his legs are fuzzy too. eeek. His seizures have changed and I am sure it is because he is starting to go through puberty. I was just playing with 's 'perfect little feet' on the airplane today. I was wondering if anyone else did the same. Sounds like you see in the same light I see , perfect. I always have volunteers for his outgrown shoes because his feet never touch the ground. JULIE HASSELBERGER wrote: You could try it one night, straightens out both when just one is splinted...it must feel more comfortable. But who knows what the muscle tone will do. I hate the skinny little boy... and do you ever wonder or think about puberty being around the corner..and the growth changes that will happen? My daughter matured young... had her period at age 10..so sometimes I wonder what will go through. I imagine it is harder with girls...all of the changes... but because is so skinny... and growing... I can't imagine what raging hormones are going to do to him. I hear that the seizures can change dramatically. Perhaps that is premature worry huh? Knobby knees, skinny skinny body.. and sweet absolutely perfect little feet that have never calloused or gotten stained with mud. Take care. Sharon wrote: Hmmm. I wonder if 's Specialists would agree that could have alternate leg splinting. It is really hard to flip him over (he can't do it on his own) when he is facing away from me. The new leg splints are framed in hard plastic but work fantastic. also has the big nobby knees. He weighs 51 lbs but is also very tall so he looks so skinny. Thanks for sharing about . He really does sound like in so many ways. Take care, Sharon T. JULIE HASSELBERGER wrote: Oh.. we also splint one leg at night when he sleeps.. he likes to curl up as well, but he gets really tight and I have to unfold him like a pretzel sometimes. Splinting one leg, alternating each night has been enough to keep him from curling in... interesting that you splint at night as well... JULIE HASSELBERGER wrote: had double hip osteotomy surgery in January of 2004.. his hips were narrow, and then the right hip came out of socket. It was causing him obvious pain... He sees both an orthpedic specialist as well as a pediatric physiatrist.. the Physiatrist has him on baclofen because he started having wicked muscle spasms about the same time as the hips went bad. We have had success with botox to release the spasticity in his hamstrings. HIs spinal x rays have been perfect, but the hips are a continued source of concern. He sees a great Orthopedic doctor at Yale New Haven Hospital...and thankfully the hip surgery has not reversed it self. They tell me, however, that repeat surgery can not be ruled out because his hip is starting to be slightly sublaxated again. The orthopedic surgery was definately far more traumatic than the Nissen Fundo.. because orthopedic surgery is always painful no matter who you are. He has great big knobby knees, and is so skinny.. compared to my other husky son... it is strange. My 6 year old weights 30 pounds more than his 9 year old brother. I have to say there was signigicant improvement in his abilities post hip surgery...but 6 of one, half dozen of the other... now we have tremendous spasms... not sure if that is related or not, but the spasms started around the same time. He is driving me crazy with the crying and congestion... and what makes it worse is he has laughing spells, crying spells, intermittently. Makes me crazy. Take care.... Gpeach3 wrote: was orginally seen at Shriners for scoliosis every 6 months and is now seen once a year for a 'watch'. He also has dislocated hips. They do not want to do surgery unless is in pain. We just started Botox in his hamstrings and wrists. He was starting to get contractures in his knees. 's favorite sleeping postion was curled up like a ball. We now have great knee splints for sleep and so so ones for daytime while lounging. We will try botox again in March. How about ? Re: Re: Gastrostmy feeding We are in Connecticut, Fairfield County about 2 hours from New York City. I have been asked if I have a medical background also, I guess you start to " talk the talk " after so long. Can you relate to this... oh the horror of having to explain everything about your child to an ambulance driver, or ER department.. " so, what is your child's diagnosis and medical history? " Its like... " you have an hour, I'll give you the short version " And then, they admit you to a room...and you have to go through the same process over and over... I am the one who knows specifically what 's pain thresholds are...how he reacts to specific drugs..like morphine.. and just recently when he had his Nissen..they gave him Morphine.. I knew from his hip surgery that morphine does not work for him.. and he started getting really really itchy...then they gave him benedryl for the itching and I was adament that if they gave him benedryl he would have a seizure... (benedryl opens the threshold for seizures).. and guess who had a seizure? I was clear that they should try tylenol with codeine, and valium..because that combination worked best for him. They were fairly good at listening to me after that, because he settled down, and slept for 15 hours.. I am of the school of thought that our role is to be storehouse of knowledge and information.. and I dont know about anyone else but I have running list of meds and a journal going back to when he was 8 weeks old. If you dont do it, no one else will... and medical professionals only have your child in a file..they dont remember the intricacies and details like a mom. You know what I mean? Sharon wrote: , Isn't it amazing how much 'medical' we learn. I have been asked a few times by Nurses/Doctors if I was a Nurse. Along with learning all that 'medical', has taught us to love like we never knew we could. What State/Country are you in? I am in California. Sharon JULIE HASSELBERGER wrote: Sharon, Thats really good to know.. I am probably way too gentle with the venting and will try some of those things. We make a huge deal when coughs too..isnt that funny?? We do have regular consults with pulmonary, and have to give him albuterol and chest PT, and occasionally an antibiotic more as a preventative program to keep his airway clear. Even when he coughs, sometimes it isnt enough to clear it all... He had been refluxing in his sleep and we think probably aspirating tiny amounts for quite some time... his baseline x ray isnt perfect. What I did not know before learning so much about reflux, was how much long term damage it does to the airway and the lungs. It is subtle sometimes, and takes years before they can even really detect lung damage... but at our last consult, the pulmonary doc was telling me that we were 100% doing the right thing by stopping the reflux, doing g tube feeds, and having an aggressive program for keeping the airway clean. I wish now that we knew this when the reflux started many years ago.... But, back to the gas... gotta work on that today... he seems like he has gained alittle bit of weight back. He is 9 years old, and weighs only 39 pounds... but he looks great, just the darn congestion and gas. Thanks... I wish you lived near me, I would invite you over for coffee!! Sharon wrote: The venting of the G-Tube was something I thought I was doing well but after watching 's Nurses vent him I was shocked at the opportunities I was missing. They were getting huge amounts of gas. Some times they just spin the Mic Key and get gas. Sometimes just slight pressure around the MicKey. Even changing 's postion on the couch got gas. I felt terrible that all this time I had not tried all these ways of releiving his gas pain. In fact, I didn't know he had gas. We make a big deal of it when we get gassy noises. Typical 'boy' stuff ! is also very congested right now. The one thing we have always done is praise him and make a big deal of when he coughs. He thinks he is really pleasing us with big coughs. Since the Mic Key and Nissen we have not gotten pnemonia and only had bronchitis twice. Not bad for 3 years! Sharon JULIE HASSELBERGER wrote: Thank you Sharon... I agree that the constant reflux was horrible..the vomitting, and once we found out he was aspirating..the fear of the reflux... the long term damage that internal reflux can do is extremely serious... so thanks for the words of support. 9 years old and so many challenges already, and its so important to be on top of things like..the reflux, because in one years time his endoscopy changed dramatically. He has been crying alot the past few days, perhaps I need to do better job venting the G tube. But he has off and on congestion still...sounding course and when he coughs he clears most of it...but it is troubling....he has so much " gunky " stuff in his upper airway... Thanks... so much. Sharon wrote: Hi , did O.K. following the surgery. It was hard to see him wretch but knowing it was not going up and down his throat made it tolerable. Both my brother and father had throat cancer so 's constant reflux was frightening for me. It has actually taken over a year to get back to 250mls per hour. It was taking 2 hours. We tried Prevacid with no real results. is extremely gassy and venting every time we can seems to have the best results for his obvious discomfort. The least of amount of meds going into the better. I would think that can tell that his tummy is different. The way the Surgeon described how they do the Nissen I think I would feel the difference if it were done to me. I will ask one of 's Nurses to ask her older brother. He had the Nissen done for his adult reflux. The G-Tube and Nissen surgery is the best decision we have ever made. It has been three years since the Nissen was done. is happier & healthier and actually on the charts as far as his weight goes. Your description of sounds as if you are describing . His smile melts my heart every time. I feel blessed to get the 'instant smile ' just by catching his eye. Sharon wrote: How did do in the weeks following the Nissen.. just had his, and it is a relief to see the reflux and vomitting gone.. he is slowly ramping up to tolerating bigger feeds, but it still takes him an hour to tolerate 250 mls.. any more and he gets really upset. Do you have any insight? How long has he had the surgery? Since it is anti reflux surgery, we are hoping that the internal damage has from the reflux will begin to heal... it was a rough road the months leading up to the Nissen. We had to go from a G tube, to a G/J tube..and intestinal feeding was no walk in the park! He still cries out alot...so we still have much to focus on. Do you still give stomach meds even after he had to have the surgery... is still on Prevacid, although we were able to stop some of the other meds for the stomach. I know he is aware that his tummy feels different because he always has his hands there. what do you think?? Hi to all of you old hands out there. > Our daughter has just (2 days ago) had a g-tube fitted. > What I want to know is how quick a 150ml feed should take. > Is a few minutes OK, or is this too quick? Or can it be too quick? > > Dom, Chloe's dad, difuse bi-lat pmg > > > > > > > Quote Link to comment Share on other sites More sharing options...
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