Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Hi , As far as the pump alarming, we have gone through different times when it seems to alarm often and then weeks of peace through the night. Annie seems to need her g-tube replace about every three months. Our GI lab has checked to make sure the size is right and that it is fitting well. We occasionally have had trouble with the tubing on the kangaroo bags having a kinks in them. My only other suggestion is to maybe raise or lower the pump so Colin has plenty of slack on the tube. We find the 24 inch extension works much better for us than the 12 inch. As far as moving kids into big beds, I can only tell you from our experience. Annie's twin Charlie went to a bed at about 2 1/2 years old. We waited with Annie until we felt she could really understand that she could not climb out of bed while hooked up to her pump. We moved her to a regular twin bed that has a rail on it at about 3 years 3 months and she the transition into a bed wonderfully. Good luck, Kerry Bresee, Mom of Jack, age 7, Charlie, age 3 1/2, Annie (RSS) age 3 1/2, and Tommy, 18 months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , As you probably know, we have the 4-1/2 year old triplets and is our RSS son. When first got his g-tube at 18 mos., I had no idea the pump would go off so much. We call it our 4th unplanned child. I've lost a lot of sleep over that darn pump. Anyway, we started with the Flexiflo Companion and have since switched over to the Zevex Enteralite. The Zevex pump doesn't go off half as much as the Flexiflo did. It's not as sensitive. Also, things that helped us was to hook the hose up directly to the tube vs. feeding it up thru a pajama pant leg. I would also check the hose before we went to bed to make sure there are no kinks in it. He always wears 2 piece pajamas vs. the 1-piece zip ups. We've had good luck that way. We've always hooked up when putting him in bed whether it be in a crib or toddler bed. His triplet siblings moved into toddler beds at 20 mos, but I kept in his crib until he was almost 3. When he got strong enough to climb to the top of the crib, it was time to move him into a bed. My other two are currently in twin beds and he's still in his toddler bed - they are all in the same room. He doesn't seem to mind at all. I feel more comfortable with him lower to the ground. At times, he does move around and only on a few occasions has the hose gotten disconnected from the feeding bag hose. Other than that, we haven't had any problems. Jen & have pulled on it and played with it, but overall it hasn't caused us any problems. The worst that's going to happen is that either his mic-key could come out - no problem, other than you have a mess to clean up and a new mic-key to put in or the connecting hose would disconnect from the feeding bag hose - again, another mess to clean up. We usually changed his mic-key button about every 3 months. I try not to go longer than that, cause eventually the balloon inside deflates and it's at more risk to coming out easier. I probably should change it about every 2 months, but I get pretty lazy in that department. When I start to see it being a little loose, I change it before something happens. Hope this helps! Cheryl Mom to Jen, , and - 4-1/2 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , As you probably know, we have the 4-1/2 year old triplets and is our RSS son. When first got his g-tube at 18 mos., I had no idea the pump would go off so much. We call it our 4th unplanned child. I've lost a lot of sleep over that darn pump. Anyway, we started with the Flexiflo Companion and have since switched over to the Zevex Enteralite. The Zevex pump doesn't go off half as much as the Flexiflo did. It's not as sensitive. Also, things that helped us was to hook the hose up directly to the tube vs. feeding it up thru a pajama pant leg. I would also check the hose before we went to bed to make sure there are no kinks in it. He always wears 2 piece pajamas vs. the 1-piece zip ups. We've had good luck that way. We've always hooked up when putting him in bed whether it be in a crib or toddler bed. His triplet siblings moved into toddler beds at 20 mos, but I kept in his crib until he was almost 3. When he got strong enough to climb to the top of the crib, it was time to move him into a bed. My other two are currently in twin beds and he's still in his toddler bed - they are all in the same room. He doesn't seem to mind at all. I feel more comfortable with him lower to the ground. At times, he does move around and only on a few occasions has the hose gotten disconnected from the feeding bag hose. Other than that, we haven't had any problems. Jen & have pulled on it and played with it, but overall it hasn't caused us any problems. The worst that's going to happen is that either his mic-key could come out - no problem, other than you have a mess to clean up and a new mic-key to put in or the connecting hose would disconnect from the feeding bag hose - again, another mess to clean up. We usually changed his mic-key button about every 3 months. I try not to go longer than that, cause eventually the balloon inside deflates and it's at more risk to coming out easier. I probably should change it about every 2 months, but I get pretty lazy in that department. When I start to see it being a little loose, I change it before something happens. Hope this helps! Cheryl Mom to Jen, , and - 4-1/2 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , As you probably know, we have the 4-1/2 year old triplets and is our RSS son. When first got his g-tube at 18 mos., I had no idea the pump would go off so much. We call it our 4th unplanned child. I've lost a lot of sleep over that darn pump. Anyway, we started with the Flexiflo Companion and have since switched over to the Zevex Enteralite. The Zevex pump doesn't go off half as much as the Flexiflo did. It's not as sensitive. Also, things that helped us was to hook the hose up directly to the tube vs. feeding it up thru a pajama pant leg. I would also check the hose before we went to bed to make sure there are no kinks in it. He always wears 2 piece pajamas vs. the 1-piece zip ups. We've had good luck that way. We've always hooked up when putting him in bed whether it be in a crib or toddler bed. His triplet siblings moved into toddler beds at 20 mos, but I kept in his crib until he was almost 3. When he got strong enough to climb to the top of the crib, it was time to move him into a bed. My other two are currently in twin beds and he's still in his toddler bed - they are all in the same room. He doesn't seem to mind at all. I feel more comfortable with him lower to the ground. At times, he does move around and only on a few occasions has the hose gotten disconnected from the feeding bag hose. Other than that, we haven't had any problems. Jen & have pulled on it and played with it, but overall it hasn't caused us any problems. The worst that's going to happen is that either his mic-key could come out - no problem, other than you have a mess to clean up and a new mic-key to put in or the connecting hose would disconnect from the feeding bag hose - again, another mess to clean up. We usually changed his mic-key button about every 3 months. I try not to go longer than that, cause eventually the balloon inside deflates and it's at more risk to coming out easier. I probably should change it about every 2 months, but I get pretty lazy in that department. When I start to see it being a little loose, I change it before something happens. Hope this helps! Cheryl Mom to Jen, , and - 4-1/2 years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 , I don't remember how often we used to change Max's button, but I do remember that we were told to check the balloon once a week. There should be 5cc's of water in it. Sometimes, as the latex or whatever it is made of, begins to wear down, some water leaks out, so there would be maybe 3.5cc's or so. All we did was then add the extra cc's to make it to 5 again, then we checked the balloon more often. I really doubt we were able to go three months without changing. I'm not even sure we made it to two months. You really should be checking more often just to make sure. The problem is that if the balloon is deflated, there is more of a chance that it will pop out of his stomach. Also, beware that you will always get some sort of fluid out of the button. What you have to do is recognize the difference between plain water and stomach juices. It's not hard to tell the difference. The latter can be yellowish at times. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Hi , Sorry to hear you are having broken nights...not what you need at all!! I'm afraid I don;t have any tips for that - usually when Finlays alarm goes off its for a good reason - like its tangled around him and the flow is obstructed.... In terms of changing the mic-key button - Finlay is on his 3rd button in 9 months - but as far as I can gather there is no hard and fast rule as to how often they need to be changed - it all depends on the child. (or the parents - Finlay's last balloon burst because his dad put antibiotics into the balloon opening thinking it was a seperate medicine opening - duh!) Finlay made the move to a toddler bed a few weeks ago - Logan (baby brother) needed the cot!!! Its been really successful and the tube hasn;t been an issue - he just knows he can't get out of bed until he has been " unplugged " . I was worried that he would get up in the night and forget he was attached to the pump - but it hasn't happened. Anyway good luck with it all - and heres hoping you get some sleep! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Hello, : There is nothing worse than having night after night of broken sleep! I'm sorry that I can't help you on the pump feeding (alarm) because my son is bolus fed and we never did do the pump feedings. As for how often we change the button, I think it really does depend on each individual family. We have gone well over 3 months without changing it. We just make sure the button is secure. If it feels loose, we change it. Our G.I. is the type of doctor that is laid back (in a good way) and uses a lot of common sense. She said to check the water level about once a month and to make sure it's at 5 cc's. If it appears looser than normal, check the water and if you just made sure the water was at 5 cc's and it's still loose then it should be time to change it. Now this is HER opinion and one that has worked for us. 's never had a problem. Hopefully you can take a nap during the day to make up for the time you losing at night. Take care! Stacie Mom to daughter, , 9 yrs. and son, , 5 1/2 yrs. with RSS, g-tube and assemetry. He's 32 lbs. and 38 in. tall. > Hi , > Sorry to hear you are having broken nights...not what you need at > all!! I'm afraid I don;t have any tips for that - usually when > Finlays alarm goes off its for a good reason - like its tangled > around him and the flow is obstructed.... > In terms of changing the mic-key button - Finlay is on his 3rd button > in 9 months - but as far as I can gather there is no hard and fast > rule as to how often they need to be changed - it all depends on the > child. (or the parents - Finlay's last balloon burst because his dad > put antibiotics into the balloon opening thinking it was a seperate > medicine opening - duh!) > Finlay made the move to a toddler bed a few weeks ago - Logan (baby > brother) needed the cot!!! Its been really successful and the tube > hasn;t been an issue - he just knows he can't get out of bed until he > has been " unplugged " . I was worried that he would get up in the > night and forget he was attached to the pump - but it hasn't happened. > Anyway good luck with it all - and heres hoping you get some sleep! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Hello, : There is nothing worse than having night after night of broken sleep! I'm sorry that I can't help you on the pump feeding (alarm) because my son is bolus fed and we never did do the pump feedings. As for how often we change the button, I think it really does depend on each individual family. We have gone well over 3 months without changing it. We just make sure the button is secure. If it feels loose, we change it. Our G.I. is the type of doctor that is laid back (in a good way) and uses a lot of common sense. She said to check the water level about once a month and to make sure it's at 5 cc's. If it appears looser than normal, check the water and if you just made sure the water was at 5 cc's and it's still loose then it should be time to change it. Now this is HER opinion and one that has worked for us. 's never had a problem. Hopefully you can take a nap during the day to make up for the time you losing at night. Take care! Stacie Mom to daughter, , 9 yrs. and son, , 5 1/2 yrs. with RSS, g-tube and assemetry. He's 32 lbs. and 38 in. tall. > Hi , > Sorry to hear you are having broken nights...not what you need at > all!! I'm afraid I don;t have any tips for that - usually when > Finlays alarm goes off its for a good reason - like its tangled > around him and the flow is obstructed.... > In terms of changing the mic-key button - Finlay is on his 3rd button > in 9 months - but as far as I can gather there is no hard and fast > rule as to how often they need to be changed - it all depends on the > child. (or the parents - Finlay's last balloon burst because his dad > put antibiotics into the balloon opening thinking it was a seperate > medicine opening - duh!) > Finlay made the move to a toddler bed a few weeks ago - Logan (baby > brother) needed the cot!!! Its been really successful and the tube > hasn;t been an issue - he just knows he can't get out of bed until he > has been " unplugged " . I was worried that he would get up in the > night and forget he was attached to the pump - but it hasn't happened. > Anyway good luck with it all - and heres hoping you get some sleep! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 , Glad to see your question about when to move a tube fed child from a crib to bed. Our son is 2 1/2 and I have been trying to decide what to do. It was great to see some of the responses from parents of older children. We were told that his button could last anywhere from one to six months. It depends on the child, medication they are one, etc. We changed his first one after three months. I know a family that changes it every month because their insurance covers the costs of the tube and this way there is less chance of it falling out on its own. Our insurance only covers it until he turns 3 (six more months).....so I will probably hold out as long as possible since it is expensive to replace. We were told to check the water every other week. Our son's only needs 3 cc's of water. Finally, we have had both the ROSS Companion Pump and the Kangaroo Pump. The ROSS was great about not being too sensitive, the Kangaroo is more sensitive mostly due to the fact that my son moves sooooo much while he sleeps. (In fact I just checked on him a few minutes ago and he was sound asleep with the tubing wrapped around his neck two times!!!!!!!!!) Does anyone else have that happen? Alison > We've had a lot of problems with the alarm on Colin's pump going off > at night and I'm wondering if anyone has any tips. It seems like it > goes off at least once or twice a night and then I can't sleep > because I hear the horrible alarm sound in my sleep! > > Also, I'm wondering how often you change the mic-key button. We > received instruction from the GI doctor and it has been three months > since it was changed. I hope we haven't waited too long. > > And finally, what happens when g-tube fed kids need to move to a > toddler bed? Not that we are there yet, but Colin's twin sister is > pretty close to climbing out of her crib, so it got me thinking about > it. Do you just hook up the pump after they have fallen asleep? > > Thanks, > > Colin (RSS) and Hayden - 20 mo. twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 , Glad to see your question about when to move a tube fed child from a crib to bed. Our son is 2 1/2 and I have been trying to decide what to do. It was great to see some of the responses from parents of older children. We were told that his button could last anywhere from one to six months. It depends on the child, medication they are one, etc. We changed his first one after three months. I know a family that changes it every month because their insurance covers the costs of the tube and this way there is less chance of it falling out on its own. Our insurance only covers it until he turns 3 (six more months).....so I will probably hold out as long as possible since it is expensive to replace. We were told to check the water every other week. Our son's only needs 3 cc's of water. Finally, we have had both the ROSS Companion Pump and the Kangaroo Pump. The ROSS was great about not being too sensitive, the Kangaroo is more sensitive mostly due to the fact that my son moves sooooo much while he sleeps. (In fact I just checked on him a few minutes ago and he was sound asleep with the tubing wrapped around his neck two times!!!!!!!!!) Does anyone else have that happen? Alison > We've had a lot of problems with the alarm on Colin's pump going off > at night and I'm wondering if anyone has any tips. It seems like it > goes off at least once or twice a night and then I can't sleep > because I hear the horrible alarm sound in my sleep! > > Also, I'm wondering how often you change the mic-key button. We > received instruction from the GI doctor and it has been three months > since it was changed. I hope we haven't waited too long. > > And finally, what happens when g-tube fed kids need to move to a > toddler bed? Not that we are there yet, but Colin's twin sister is > pretty close to climbing out of her crib, so it got me thinking about > it. Do you just hook up the pump after they have fallen asleep? > > Thanks, > > Colin (RSS) and Hayden - 20 mo. twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 , Glad to see your question about when to move a tube fed child from a crib to bed. Our son is 2 1/2 and I have been trying to decide what to do. It was great to see some of the responses from parents of older children. We were told that his button could last anywhere from one to six months. It depends on the child, medication they are one, etc. We changed his first one after three months. I know a family that changes it every month because their insurance covers the costs of the tube and this way there is less chance of it falling out on its own. Our insurance only covers it until he turns 3 (six more months).....so I will probably hold out as long as possible since it is expensive to replace. We were told to check the water every other week. Our son's only needs 3 cc's of water. Finally, we have had both the ROSS Companion Pump and the Kangaroo Pump. The ROSS was great about not being too sensitive, the Kangaroo is more sensitive mostly due to the fact that my son moves sooooo much while he sleeps. (In fact I just checked on him a few minutes ago and he was sound asleep with the tubing wrapped around his neck two times!!!!!!!!!) Does anyone else have that happen? Alison > We've had a lot of problems with the alarm on Colin's pump going off > at night and I'm wondering if anyone has any tips. It seems like it > goes off at least once or twice a night and then I can't sleep > because I hear the horrible alarm sound in my sleep! > > Also, I'm wondering how often you change the mic-key button. We > received instruction from the GI doctor and it has been three months > since it was changed. I hope we haven't waited too long. > > And finally, what happens when g-tube fed kids need to move to a > toddler bed? Not that we are there yet, but Colin's twin sister is > pretty close to climbing out of her crib, so it got me thinking about > it. Do you just hook up the pump after they have fallen asleep? > > Thanks, > > Colin (RSS) and Hayden - 20 mo. twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Alison, To prevent the tube from wraping around Max's neck, we used to use a large safety pin and pin the tubing to Max's mattress. We placed it between him and the part where the tube to his button connected with the tube to the pump. The tube was able to move freely inside the pin, but could not give Max enough tubing to wrap around him. In retrospect, it probably was not a great idea to use a pin, but Max NEVER touched it, so it was not a problem. By the way, it was also another safety feature that made it less likely for the tube to disconnect at that point. The pin prevented the connection from being pulled. I don't, however, understand how your insurance company can say they will only pay for the button until your son turns three. How can they determine that he will turn three and then not need the button anymore? That makes no sense. It sounds to me like you will have a fight on your hands. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Alison, To prevent the tube from wraping around Max's neck, we used to use a large safety pin and pin the tubing to Max's mattress. We placed it between him and the part where the tube to his button connected with the tube to the pump. The tube was able to move freely inside the pin, but could not give Max enough tubing to wrap around him. In retrospect, it probably was not a great idea to use a pin, but Max NEVER touched it, so it was not a problem. By the way, it was also another safety feature that made it less likely for the tube to disconnect at that point. The pin prevented the connection from being pulled. I don't, however, understand how your insurance company can say they will only pay for the button until your son turns three. How can they determine that he will turn three and then not need the button anymore? That makes no sense. It sounds to me like you will have a fight on your hands. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 Alison, To prevent the tube from wraping around Max's neck, we used to use a large safety pin and pin the tubing to Max's mattress. We placed it between him and the part where the tube to his button connected with the tube to the pump. The tube was able to move freely inside the pin, but could not give Max enough tubing to wrap around him. In retrospect, it probably was not a great idea to use a pin, but Max NEVER touched it, so it was not a problem. By the way, it was also another safety feature that made it less likely for the tube to disconnect at that point. The pin prevented the connection from being pulled. I don't, however, understand how your insurance company can say they will only pay for the button until your son turns three. How can they determine that he will turn three and then not need the button anymore? That makes no sense. It sounds to me like you will have a fight on your hands. Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2002 Report Share Posted August 28, 2002 We change our button only when it needs to be changed. It has fallen out twice....both times, I am ashamed to say, we had noticed it was loose for several days but didn't bother to change it. We never check the balloon unless it is loose. As for moving to a bed, we didn't have trouble....although I did worry about it. was never a mover in her sleep. We did hook her up right when she got into the bed. She understood that she was tethered to that pump. Now she just gets bolus feedings in her sleep. That beeping noise is history for us. I sympathize with you but have no tips to avoid it. For us, it was usually a kink in the tubing. As a sidenote, was very sad when I returned her pump to the healthcare company. She loved the rhythmic noise it made when it was turning. I was really surprised by that reaction. She had never mentioned it to me....but she had that pump going every night from 6 months to 4 years. It had become a part of her environment. Irene > We've had a lot of problems with the alarm on Colin's pump going off > at night and I'm wondering if anyone has any tips. It seems like it > goes off at least once or twice a night and then I can't sleep > because I hear the horrible alarm sound in my sleep! > > Also, I'm wondering how often you change the mic-key button. We > received instruction from the GI doctor and it has been three months > since it was changed. I hope we haven't waited too long. > > And finally, what happens when g-tube fed kids need to move to a > toddler bed? Not that we are there yet, but Colin's twin sister is > pretty close to climbing out of her crib, so it got me thinking about > it. Do you just hook up the pump after they have fallen asleep? > > Thanks, > > Colin (RSS) and Hayden - 20 mo. twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Hi Alison, We too are thinking about the crib to bed situation. Although is fine in his crib, Becca can climb out if she wants too. We really would prefer to put them both in beds at the same time. This morning, I vented at 6 am and went in to check him at 6:45. Not only had he rolled off his pillow, his head was at the foot of his crib (instead of his feet) and the tube was wrapped around him. This happens all the time. So far our best solution has been to place the pump at the foot of the crib. Then when he rolls over, he doesn't get so tangled. How are all of you doing? Judith, Steve, (RSS) and (non RSS) 2 1/2 year old twins > > We've had a lot of problems with the alarm on Colin's pump going > off > > at night and I'm wondering if anyone has any tips. It seems like it > > goes off at least once or twice a night and then I can't sleep > > because I hear the horrible alarm sound in my sleep! > > > > Also, I'm wondering how often you change the mic-key button. We > > received instruction from the GI doctor and it has been three > months > > since it was changed. I hope we haven't waited too long. > > > > And finally, what happens when g-tube fed kids need to move to a > > toddler bed? Not that we are there yet, but Colin's twin sister is > > pretty close to climbing out of her crib, so it got me thinking > about > > it. Do you just hook up the pump after they have fallen asleep? > > > > Thanks, > > > > Colin (RSS) and Hayden - 20 mo. twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Jodi, Thanks for the pin tip, we will try it tonight. The reason my insurance stops button coverage at three is due to the way my husband's insurance policy is written. We have no DME coverage, but due to an Early Intervention loophole written into the policy, it must cover DME while he is eligible for E.I. services. It was our case manager who uncovered this loophole......she's great. Anyway, when he turns three he no longer gets the replacement buttons, syringes or feeding bags. On top of the cost of Pediasure, we will have quite an expensive habit on our hands!!!!! Alison > Alison, > > To prevent the tube from wraping around Max's neck, we used to use a > large safety pin and pin the tubing to Max's mattress. We placed it > between him and the part where the tube to his button connected with > the tube to the pump. The tube was able to move freely inside the > pin, but could not give Max enough tubing to wrap around him. > > In retrospect, it probably was not a great idea to use a pin, but > Max NEVER touched it, so it was not a problem. By the way, it was > also another safety feature that made it less likely for the tube to > disconnect at that point. The pin prevented the connection from > being pulled. > > I don't, however, understand how your insurance company can say they > will only pay for the button until your son turns three. How can > they determine that he will turn three and then not need the button > anymore? That makes no sense. It sounds to me like you will have a > fight on your hands. > > Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Judith and Steve, We are doing really well. I don't blame you for wanting to move and at the same time into a bed. Jake can not climb out of his crib, nor does he try. It is just the age thing. We are really trying to do age appropriate things for him. Besides someone gave us a toddler race car bed that I know he will love to use! Jake is continuing to grow well. He is 32 inches, 23 pounds. Dr. H postponed starting growth hormones since he is still growing so well. Ever since his tube was placed one year ago he is still in a catch-up phase. I really feel at ease with RSS at this point, and just have a sense of calmness finally for the first time in 2 1/2 years. It is getting easier. Next week he begins special ed preschool so I am sure all the calmness will disappear as he screams in fear getting on the school bus! Oh well! Alison > > > We've had a lot of problems with the alarm on Colin's pump going > > off > > > at night and I'm wondering if anyone has any tips. It seems like > it > > > goes off at least once or twice a night and then I can't sleep > > > because I hear the horrible alarm sound in my sleep! > > > > > > Also, I'm wondering how often you change the mic-key button. We > > > received instruction from the GI doctor and it has been three > > months > > > since it was changed. I hope we haven't waited too long. > > > > > > And finally, what happens when g-tube fed kids need to move to a > > > toddler bed? Not that we are there yet, but Colin's twin sister > is > > > pretty close to climbing out of her crib, so it got me thinking > > about > > > it. Do you just hook up the pump after they have fallen asleep? > > > > > > Thanks, > > > > > > Colin (RSS) and Hayden - 20 mo. twins Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Alison, I'd love to hear Dr. Harbison's reaction to that one! I cannot imagine a company refusing to pay for buttons. That is like depriving your child of FOOD!!! The strange thing is that if he were hospitalized and given TPN via an IV for his nutrition, they would probably pay. And it would cost more. Is there no chance you can fight this? Have you spoken to Theresa at MAGIC? Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Alison, I'd love to hear Dr. Harbison's reaction to that one! I cannot imagine a company refusing to pay for buttons. That is like depriving your child of FOOD!!! The strange thing is that if he were hospitalized and given TPN via an IV for his nutrition, they would probably pay. And it would cost more. Is there no chance you can fight this? Have you spoken to Theresa at MAGIC? Jodi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Alison, There's got to be a way for you guys to get the DME stuff covered. We contacted our Dept. of Special Needs and ended up qualifying for some state funded insurance that picked up the tab for everything. If that didn't happen, I think there was something under Title 19 that would cover it. It is not right for you to have to pay those costs. I would contact your local children's hospital and speak to someone in the DSN dept. to see what you're options are. We all know how costly feeding bags, formula, etc. is. It's just not right for you to have to pay for something you kid needs. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Alison, There's got to be a way for you guys to get the DME stuff covered. We contacted our Dept. of Special Needs and ended up qualifying for some state funded insurance that picked up the tab for everything. If that didn't happen, I think there was something under Title 19 that would cover it. It is not right for you to have to pay those costs. I would contact your local children's hospital and speak to someone in the DSN dept. to see what you're options are. We all know how costly feeding bags, formula, etc. is. It's just not right for you to have to pay for something you kid needs. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2002 Report Share Posted August 31, 2002 Cheryl, Thanks so much for the information regarding DME help. Do you know if the state funded insurance is a Medicaid Waiver of some type? Currently Jake is approved under Virginia's backwards MR Waiver (......yes that means Mental Retardation Waiver)......the only catch is there is a waiting list with thousands of people on it.......so it is pointless. We are looking into applying for an AT (Assistive Tech.) Waiver. Not sure what the qualifications are, but we will try. I am curious if this is what is under in Ct., or is it something different. Thanks. Alison > Alison, > > There's got to be a way for you guys to get the DME stuff covered. We > contacted our Dept. of Special Needs and ended up qualifying for > some state funded insurance that picked up the tab for everything. If that > didn't happen, I think there was something under Title 19 that would cover > it. It is not right for you to have to pay those costs. I would contact > your local children's hospital and speak to someone in the DSN dept. to see > what you're options are. We all know how costly feeding bags, formula, etc. > is. It's just not right for you to have to pay for something you kid needs. > > Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2002 Report Share Posted August 31, 2002 Cheryl, Thanks so much for the information regarding DME help. Do you know if the state funded insurance is a Medicaid Waiver of some type? Currently Jake is approved under Virginia's backwards MR Waiver (......yes that means Mental Retardation Waiver)......the only catch is there is a waiting list with thousands of people on it.......so it is pointless. We are looking into applying for an AT (Assistive Tech.) Waiver. Not sure what the qualifications are, but we will try. I am curious if this is what is under in Ct., or is it something different. Thanks. Alison > Alison, > > There's got to be a way for you guys to get the DME stuff covered. We > contacted our Dept. of Special Needs and ended up qualifying for > some state funded insurance that picked up the tab for everything. If that > didn't happen, I think there was something under Title 19 that would cover > it. It is not right for you to have to pay those costs. I would contact > your local children's hospital and speak to someone in the DSN dept. to see > what you're options are. We all know how costly feeding bags, formula, etc. > is. It's just not right for you to have to pay for something you kid needs. > > Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 31, 2002 Report Share Posted August 31, 2002 Cheryl, Thanks so much for the information regarding DME help. Do you know if the state funded insurance is a Medicaid Waiver of some type? Currently Jake is approved under Virginia's backwards MR Waiver (......yes that means Mental Retardation Waiver)......the only catch is there is a waiting list with thousands of people on it.......so it is pointless. We are looking into applying for an AT (Assistive Tech.) Waiver. Not sure what the qualifications are, but we will try. I am curious if this is what is under in Ct., or is it something different. Thanks. Alison > Alison, > > There's got to be a way for you guys to get the DME stuff covered. We > contacted our Dept. of Special Needs and ended up qualifying for > some state funded insurance that picked up the tab for everything. If that > didn't happen, I think there was something under Title 19 that would cover > it. It is not right for you to have to pay those costs. I would contact > your local children's hospital and speak to someone in the DSN dept. to see > what you're options are. We all know how costly feeding bags, formula, etc. > is. It's just not right for you to have to pay for something you kid needs. > > Cheryl Quote Link to comment Share on other sites More sharing options...
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