Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 , I know nothing about tube feedings but I wanted to respond and let you know that we will pray that Finlay will recover quickly. Pattie > Hello Everyone :-) > I haven't posted for AGES…..but I'm hoping some of you will remember > me ;-) > I've got so behind on all the emails on this site but have been > meaning to catch up for a long time now…..and now, instead of being > in a position to offer support to this list I have a Finlay crisis so > I am writing to ask for your collective wisdom/advice/help. > > Finlay is now 4yrs 6mths old. He has a Gastrostomy. He has been on > GH for 4 mths – growing really well. His weight gain has been > minimal and he is now very very skinny. Right now he is in hospital > with IV dextrose. He has had a vomiting bug and his blood sugar was > very low. The vomiting has stopped but he needs to be on the IV > until he can tolerate his normal feeds again. Needless to say the > bug has meant he has lost even more weight and now everyone is really > concerned about how to get him to gain weight. He is 97cms and > 12.1kgs. > He does not tolerate much in the way of bolus feeds – he gets gassy, > bloated, and vomits. We have tried changing his feed (he is on > pediasure) but for various reasons he has not tolerated any other > feed offered (including vivonex, pept jnr, fortini, nutrini) > We need to do something drastic and we are looking at > Putting in a g-j tube > Putting him on continuous day time feeds > > I know some of you are doing these things and I'm wondering how they > work logistically and also how effective you have found them in terms > of short term weight gain. I am confident I can maintain his weight > under the current regimen – (2 –3 hrly boluses and continuous > overnight feeds) so I want to boost his weight in the short term > then maintain that new weight using our current regimen. > Realistically I need him to gain 2kgs. > Has anyone been there done that????? > Any thoughts…… > > Thanks heaps > > (in New Zealand, Finlay RSS, 4yrs 6mths, 97cms, 12.1kgs, g-tube, > cisapride, growth hormone and Logan 2yrs 4mths, none of the above!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 , I know nothing about tube feedings but I wanted to respond and let you know that we will pray that Finlay will recover quickly. Pattie > Hello Everyone :-) > I haven't posted for AGES…..but I'm hoping some of you will remember > me ;-) > I've got so behind on all the emails on this site but have been > meaning to catch up for a long time now…..and now, instead of being > in a position to offer support to this list I have a Finlay crisis so > I am writing to ask for your collective wisdom/advice/help. > > Finlay is now 4yrs 6mths old. He has a Gastrostomy. He has been on > GH for 4 mths – growing really well. His weight gain has been > minimal and he is now very very skinny. Right now he is in hospital > with IV dextrose. He has had a vomiting bug and his blood sugar was > very low. The vomiting has stopped but he needs to be on the IV > until he can tolerate his normal feeds again. Needless to say the > bug has meant he has lost even more weight and now everyone is really > concerned about how to get him to gain weight. He is 97cms and > 12.1kgs. > He does not tolerate much in the way of bolus feeds – he gets gassy, > bloated, and vomits. We have tried changing his feed (he is on > pediasure) but for various reasons he has not tolerated any other > feed offered (including vivonex, pept jnr, fortini, nutrini) > We need to do something drastic and we are looking at > Putting in a g-j tube > Putting him on continuous day time feeds > > I know some of you are doing these things and I'm wondering how they > work logistically and also how effective you have found them in terms > of short term weight gain. I am confident I can maintain his weight > under the current regimen – (2 –3 hrly boluses and continuous > overnight feeds) so I want to boost his weight in the short term > then maintain that new weight using our current regimen. > Realistically I need him to gain 2kgs. > Has anyone been there done that????? > Any thoughts…… > > Thanks heaps > > (in New Zealand, Finlay RSS, 4yrs 6mths, 97cms, 12.1kgs, g-tube, > cisapride, growth hormone and Logan 2yrs 4mths, none of the above!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Hi , I'm so sorry to hear Finlay is in the hospital with a bug. It always seems like such a battle to get our kids to tolerate food again when they are sick. We put Braeden on a J-tube for 4-5 months and he did gain weight faster on the J. He was able to tolerate about 10% more cc's per hour which means he atually had an aditional feed and a half over a 24 hour period (A feed being an hours worth of food and he is 24 hour tube fed). Unfortuantley, as he got a little bigger the J tube became more of an obstruction which was increasing his reflux. While we and the Dr's were trying to decide whether or not to put him back on the G-tube Braeden resolved it for us by pulling his J tube out! The benefit of a J is you can get more food in to him but, the tube is less stable and comes out easier. Whenever it comes out you have to have it reinserted by the interventional radiology team at your hospital. (It isn't a big deal for the team to reinsert the tube. They insert the J tube through his current G-tube.) We are a few hours away from our IR team so, it was a hassle for us. Then Braeden is quite abit younger than Finlay and it's hard to tell a 18 month old not to pull on the white tube hanging out of his tummy. It is important Finaly stays on a ant-acid because his tummy will still generate gastric juice even though he is being fed through his jeujeunome (SP?) track. We found it helped to vent Braeden. I might also recommend a Zevex pump. It is quite a bit more lighter and compact than the Kangeroo Pump and can sit in a backpack Finlay can wear and it is fairly discreet. At the moment we have changed Braeden's regime. He broke his pump last week by crawling and knocking over his IV pole. So, we had to bolus every 2 hours until we recieved a replacement pump. It seemed to work. So, now he is bolus fed every 2 hours during the day and on a continous bolus/vent at night. It really has been a blessing for us since he has really been crawling and climbing stairs when he is of the pump. I hope this helps. Please feel free to conatact me if I can help in anyway. Our prayers and thoughts are with you and we hope Finlay has a quick recovery. Saundra Mom to Braeden (RSS) and Delaney 21 month twins > Hello Everyone :-) > I haven't posted for AGES…..but I'm hoping some of you will remember > me ;-) > I've got so behind on all the emails on this site but have been > meaning to catch up for a long time now…..and now, instead of being > in a position to offer support to this list I have a Finlay crisis so > I am writing to ask for your collective wisdom/advice/help. > > Finlay is now 4yrs 6mths old. He has a Gastrostomy. He has been on > GH for 4 mths – growing really well. His weight gain has been > minimal and he is now very very skinny. Right now he is in hospital > with IV dextrose. He has had a vomiting bug and his blood sugar was > very low. The vomiting has stopped but he needs to be on the IV > until he can tolerate his normal feeds again. Needless to say the > bug has meant he has lost even more weight and now everyone is really > concerned about how to get him to gain weight. He is 97cms and > 12.1kgs. > He does not tolerate much in the way of bolus feeds – he gets gassy, > bloated, and vomits. We have tried changing his feed (he is on > pediasure) but for various reasons he has not tolerated any other > feed offered (including vivonex, pept jnr, fortini, nutrini) > We need to do something drastic and we are looking at > Putting in a g-j tube > Putting him on continuous day time feeds > > I know some of you are doing these things and I'm wondering how they > work logistically and also how effective you have found them in terms > of short term weight gain. I am confident I can maintain his weight > under the current regimen – (2 –3 hrly boluses and continuous > overnight feeds) so I want to boost his weight in the short term > then maintain that new weight using our current regimen. > Realistically I need him to gain 2kgs. > Has anyone been there done that????? > Any thoughts…… > > Thanks heaps > > (in New Zealand, Finlay RSS, 4yrs 6mths, 97cms, 12.1kgs, g-tube, > cisapride, growth hormone and Logan 2yrs 4mths, none of the above!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 Hi , I'm so sorry to hear Finlay is in the hospital with a bug. It always seems like such a battle to get our kids to tolerate food again when they are sick. We put Braeden on a J-tube for 4-5 months and he did gain weight faster on the J. He was able to tolerate about 10% more cc's per hour which means he atually had an aditional feed and a half over a 24 hour period (A feed being an hours worth of food and he is 24 hour tube fed). Unfortuantley, as he got a little bigger the J tube became more of an obstruction which was increasing his reflux. While we and the Dr's were trying to decide whether or not to put him back on the G-tube Braeden resolved it for us by pulling his J tube out! The benefit of a J is you can get more food in to him but, the tube is less stable and comes out easier. Whenever it comes out you have to have it reinserted by the interventional radiology team at your hospital. (It isn't a big deal for the team to reinsert the tube. They insert the J tube through his current G-tube.) We are a few hours away from our IR team so, it was a hassle for us. Then Braeden is quite abit younger than Finlay and it's hard to tell a 18 month old not to pull on the white tube hanging out of his tummy. It is important Finaly stays on a ant-acid because his tummy will still generate gastric juice even though he is being fed through his jeujeunome (SP?) track. We found it helped to vent Braeden. I might also recommend a Zevex pump. It is quite a bit more lighter and compact than the Kangeroo Pump and can sit in a backpack Finlay can wear and it is fairly discreet. At the moment we have changed Braeden's regime. He broke his pump last week by crawling and knocking over his IV pole. So, we had to bolus every 2 hours until we recieved a replacement pump. It seemed to work. So, now he is bolus fed every 2 hours during the day and on a continous bolus/vent at night. It really has been a blessing for us since he has really been crawling and climbing stairs when he is of the pump. I hope this helps. Please feel free to conatact me if I can help in anyway. Our prayers and thoughts are with you and we hope Finlay has a quick recovery. Saundra Mom to Braeden (RSS) and Delaney 21 month twins > Hello Everyone :-) > I haven't posted for AGES…..but I'm hoping some of you will remember > me ;-) > I've got so behind on all the emails on this site but have been > meaning to catch up for a long time now…..and now, instead of being > in a position to offer support to this list I have a Finlay crisis so > I am writing to ask for your collective wisdom/advice/help. > > Finlay is now 4yrs 6mths old. He has a Gastrostomy. He has been on > GH for 4 mths – growing really well. His weight gain has been > minimal and he is now very very skinny. Right now he is in hospital > with IV dextrose. He has had a vomiting bug and his blood sugar was > very low. The vomiting has stopped but he needs to be on the IV > until he can tolerate his normal feeds again. Needless to say the > bug has meant he has lost even more weight and now everyone is really > concerned about how to get him to gain weight. He is 97cms and > 12.1kgs. > He does not tolerate much in the way of bolus feeds – he gets gassy, > bloated, and vomits. We have tried changing his feed (he is on > pediasure) but for various reasons he has not tolerated any other > feed offered (including vivonex, pept jnr, fortini, nutrini) > We need to do something drastic and we are looking at > Putting in a g-j tube > Putting him on continuous day time feeds > > I know some of you are doing these things and I'm wondering how they > work logistically and also how effective you have found them in terms > of short term weight gain. I am confident I can maintain his weight > under the current regimen – (2 –3 hrly boluses and continuous > overnight feeds) so I want to boost his weight in the short term > then maintain that new weight using our current regimen. > Realistically I need him to gain 2kgs. > Has anyone been there done that????? > Any thoughts…… > > Thanks heaps > > (in New Zealand, Finlay RSS, 4yrs 6mths, 97cms, 12.1kgs, g-tube, > cisapride, growth hormone and Logan 2yrs 4mths, none of the above!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 , Poor guy, those bugs are the worst. My daughter had the roto viruse in April and lost a kg. She too has a G tube and I would try continuous feeds before another surgery. ALyssa is on for 18 hrs a day at 55cc/hr. We have modified it to 65/hr during the day and 50/hr at night because it made her morning vomitting go away. She tolerates this much better. We take ALyssa off her pump for 2 hours at each meal. 1.5 hrs to get some hunger (or less full anyway) and then meal time and back on the pump. When we first started this regimen she gained 2 kg in about 7 weeks. However you can get more calories/day in him without causing him discomfort. I would start with continuous feeding if it were me. What do you have to lose:??? Best of Luck!!!! Dayna, Mom to Alyssa 32months, 11.3kg and 90cms Finlay.....help!!! Hello Everyone :-) I haven't posted for AGES...but I'm hoping some of you will remember me ;-) I've got so behind on all the emails on this site but have been meaning to catch up for a long time now...and now, instead of being in a position to offer support to this list I have a Finlay crisis so I am writing to ask for your collective wisdom/advice/help. Finlay is now 4yrs 6mths old. He has a Gastrostomy. He has been on GH for 4 mths - growing really well. His weight gain has been minimal and he is now very very skinny. Right now he is in hospital with IV dextrose. He has had a vomiting bug and his blood sugar was very low. The vomiting has stopped but he needs to be on the IV until he can tolerate his normal feeds again. Needless to say the bug has meant he has lost even more weight and now everyone is really concerned about how to get him to gain weight. He is 97cms and 12.1kgs. He does not tolerate much in the way of bolus feeds - he gets gassy, bloated, and vomits. We have tried changing his feed (he is on pediasure) but for various reasons he has not tolerated any other feed offered (including vivonex, pept jnr, fortini, nutrini) We need to do something drastic and we are looking at Putting in a g-j tube Putting him on continuous day time feeds I know some of you are doing these things and I'm wondering how they work logistically and also how effective you have found them in terms of short term weight gain. I am confident I can maintain his weight under the current regimen - (2 -3 hrly boluses and continuous overnight feeds) so I want to boost his weight in the short term then maintain that new weight using our current regimen. Realistically I need him to gain 2kgs. Has anyone been there done that????? Any thoughts.. Thanks heaps (in New Zealand, Finlay RSS, 4yrs 6mths, 97cms, 12.1kgs, g-tube, cisapride, growth hormone and Logan 2yrs 4mths, none of the above!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2004 Report Share Posted July 16, 2004 , Whenever Max gets one of these stomach bugs, it sets him back quite a bit. He loses weight, cannot tolerate tube feeds and winds up spending almost 2 weeks in the hospital. It is scary and frustrating. That being said, I have to add that the g-j tube is a godsend for us. With it he has tolerated feedings sooner and even avoided the hospital with the last bout of stomach issues. We have been able to run his pump continuously and used the Farrell Valve at night for venting continuously. Adding Miralax, a prescription laxative, helps, too. He does not get gassy, bloated or anything. Well, I guess that is relative. When he gets the stomach bug, his stomach becomes distended and it takes weeks, if not months, to return to normal. His stomach is still shrinking from the last event which was 2 months ago. He is nauseous at least once a day and takes Zofran as needed for it. Sometimes it is really bad and we have to add Benadryl. It has something in it that helps nausea, believe it or not! (By the way, Max is not on pump feedings now. He is feeling relatively well.) I am telling you this because I think Max and Finlay are very much alike in this area. Putting in a g-j tube is no big deal. Max has to have general anesthesia when they do it, though, because he gets way too anxious. They say it can be done without it, but he just can't do it and I can't make him do it. I don't think I would want to know what they are doing, either. I hope Finlay recovers soon. I also hope that this info helps you. Jodi Z. P.S. I just spent three days with ne Barrie and . What a time we had! Quote Link to comment Share on other sites More sharing options...
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