Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Sharon- Please consider giving Madison what she will eat by mouth. To my understanding it is very important to keep the oral stimulation alive. My son had a g-tube and was on a ventilator for awhile and also had a PEG but he lost the ability to eat by mouth because it wasn't an option. The swallow gage reflex also diminished. If you do need to put real food in the tube and you can pull the food back in the syringe it shouldn't be to thick. The PEGs are usually very generous in size even in the part you can't see. I am sorry I don't have any thoughts as to how much ketocal you should give or when but I hope the other helps. , mama to Ethan . gtube We just got home yesterday from the hospital. Madison had the PEG placed and eventually the mic -key. It has been going very well. Not as overwhelming as I thought. She tolerated everything really well. When does all the stress begin? I hope it stays this easy. Who am I kidding? We are just trying to figure out our strategy since she will continue to primarily feed/drink by mouth. We will just use this as a back-up. I know that could eventually change. We did not get a pump or anything. We are just syringing fluids and meds in her. Right now she can only tolerate half a meal. So I am working with her dietician on how we should work that out. I would love to hear any ideas especially from keto parents how you keep all of this straight. If she only eats a little how much ketocal do we give her etc? It gets really tricky. Should we just stick with ketocal because I know I can get that in the tube if she does not finish by mouth? Or what about putting her regular food in the tube? I have to puree everything anyway. It is already pretty soupy. I mix the all the ingredients together too. I am nervous about putting real food in the tube. How do I know if it is thin enough? The tube looks like it can handle thicker consistency but what about once it enters the part I can't see. Does that make any sense? I know I have heard there were probs with getting prilosec in. We give this to her in her food orally. Thanks for any ideas! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Sharon- Please consider giving Madison what she will eat by mouth. To my understanding it is very important to keep the oral stimulation alive. My son had a g-tube and was on a ventilator for awhile and also had a PEG but he lost the ability to eat by mouth because it wasn't an option. The swallow gage reflex also diminished. If you do need to put real food in the tube and you can pull the food back in the syringe it shouldn't be to thick. The PEGs are usually very generous in size even in the part you can't see. I am sorry I don't have any thoughts as to how much ketocal you should give or when but I hope the other helps. , mama to Ethan . gtube We just got home yesterday from the hospital. Madison had the PEG placed and eventually the mic -key. It has been going very well. Not as overwhelming as I thought. She tolerated everything really well. When does all the stress begin? I hope it stays this easy. Who am I kidding? We are just trying to figure out our strategy since she will continue to primarily feed/drink by mouth. We will just use this as a back-up. I know that could eventually change. We did not get a pump or anything. We are just syringing fluids and meds in her. Right now she can only tolerate half a meal. So I am working with her dietician on how we should work that out. I would love to hear any ideas especially from keto parents how you keep all of this straight. If she only eats a little how much ketocal do we give her etc? It gets really tricky. Should we just stick with ketocal because I know I can get that in the tube if she does not finish by mouth? Or what about putting her regular food in the tube? I have to puree everything anyway. It is already pretty soupy. I mix the all the ingredients together too. I am nervous about putting real food in the tube. How do I know if it is thin enough? The tube looks like it can handle thicker consistency but what about once it enters the part I can't see. Does that make any sense? I know I have heard there were probs with getting prilosec in. We give this to her in her food orally. Thanks for any ideas! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 HI , I don't have experience with the gtube, but about your question on how much ketocal to give. Our dietitian told us that if Kristan doesn't eat all of her meal by mouth, you would give the Ketocal as follows: if 1/2 a meal is eaten, give 1/2 the bottle, if 1/4 solids taken, give 3/4 bottle. It's basically a judgment call to see how much is taken by mouth. Kristan's bottle and meals are the same amount of calories, so that is how we do it. Hope this helps. Satnam, mom to Kristan, 18 months Keto kid since August 2003 > We just got home yesterday from the hospital. Madison had the PEG placed > and eventually the mic -key. It has been going very well. Not as > overwhelming as I thought. She tolerated everything really well. When does > all the stress begin? I hope it stays this easy. Who am I kidding? We are > just trying to figure out our strategy since she will continue to primarily > feed/drink by mouth. We will just use this as a back-up. I know that could > eventually change. We did not get a pump or anything. We are just > syringing fluids and meds in her. Right now she can only tolerate half a > meal. So I am working with her dietician on how we should work that out. I > would love to hear any ideas especially from keto parents how you keep all > of this straight. If she only eats a little how much ketocal do we give her > etc? It gets really tricky. Should we just stick with ketocal because I > know I can get that in the tube if she does not finish by mouth? Or what > about putting her regular food in the tube? I have to puree everything > anyway. It is already pretty soupy. I mix the all the ingredients together > too. I am nervous about putting real food in the tube. How do I know if it > is thin enough? The tube looks like it can handle thicker consistency but > what about once it enters the part I can't see. Does that make any sense? I > know I have heard there were probs with getting prilosec in. We give this > to her in her food orally. > > Thanks for any ideas! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 HI , I don't have experience with the gtube, but about your question on how much ketocal to give. Our dietitian told us that if Kristan doesn't eat all of her meal by mouth, you would give the Ketocal as follows: if 1/2 a meal is eaten, give 1/2 the bottle, if 1/4 solids taken, give 3/4 bottle. It's basically a judgment call to see how much is taken by mouth. Kristan's bottle and meals are the same amount of calories, so that is how we do it. Hope this helps. Satnam, mom to Kristan, 18 months Keto kid since August 2003 > We just got home yesterday from the hospital. Madison had the PEG placed > and eventually the mic -key. It has been going very well. Not as > overwhelming as I thought. She tolerated everything really well. When does > all the stress begin? I hope it stays this easy. Who am I kidding? We are > just trying to figure out our strategy since she will continue to primarily > feed/drink by mouth. We will just use this as a back-up. I know that could > eventually change. We did not get a pump or anything. We are just > syringing fluids and meds in her. Right now she can only tolerate half a > meal. So I am working with her dietician on how we should work that out. I > would love to hear any ideas especially from keto parents how you keep all > of this straight. If she only eats a little how much ketocal do we give her > etc? It gets really tricky. Should we just stick with ketocal because I > know I can get that in the tube if she does not finish by mouth? Or what > about putting her regular food in the tube? I have to puree everything > anyway. It is already pretty soupy. I mix the all the ingredients together > too. I am nervous about putting real food in the tube. How do I know if it > is thin enough? The tube looks like it can handle thicker consistency but > what about once it enters the part I can't see. Does that make any sense? I > know I have heard there were probs with getting prilosec in. We give this > to her in her food orally. > > Thanks for any ideas! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2004 Report Share Posted June 15, 2004 HI , I don't have experience with the gtube, but about your question on how much ketocal to give. Our dietitian told us that if Kristan doesn't eat all of her meal by mouth, you would give the Ketocal as follows: if 1/2 a meal is eaten, give 1/2 the bottle, if 1/4 solids taken, give 3/4 bottle. It's basically a judgment call to see how much is taken by mouth. Kristan's bottle and meals are the same amount of calories, so that is how we do it. Hope this helps. Satnam, mom to Kristan, 18 months Keto kid since August 2003 > We just got home yesterday from the hospital. Madison had the PEG placed > and eventually the mic -key. It has been going very well. Not as > overwhelming as I thought. She tolerated everything really well. When does > all the stress begin? I hope it stays this easy. Who am I kidding? We are > just trying to figure out our strategy since she will continue to primarily > feed/drink by mouth. We will just use this as a back-up. I know that could > eventually change. We did not get a pump or anything. We are just > syringing fluids and meds in her. Right now she can only tolerate half a > meal. So I am working with her dietician on how we should work that out. I > would love to hear any ideas especially from keto parents how you keep all > of this straight. If she only eats a little how much ketocal do we give her > etc? It gets really tricky. Should we just stick with ketocal because I > know I can get that in the tube if she does not finish by mouth? Or what > about putting her regular food in the tube? I have to puree everything > anyway. It is already pretty soupy. I mix the all the ingredients together > too. I am nervous about putting real food in the tube. How do I know if it > is thin enough? The tube looks like it can handle thicker consistency but > what about once it enters the part I can't see. Does that make any sense? I > know I have heard there were probs with getting prilosec in. We give this > to her in her food orally. > > Thanks for any ideas! > > > > > > Quote Link to comment Share on other sites More sharing options...
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