Thank you Judy/ALS Hope for showing how the feeding tube works and sharing your feelings on having the tube! My Daughter (Sonni) just had a g-tube inserted over this past weekend. She's 2 and half. Its reassuring to hear how much it has helped you in your life as I hope/expect the same for Sonni. :)
@Decoding End Times This will undoubtedly come across as trite, but don't lose hope! I had tonsilar cancer in 2004 (at age 43), treated with radiotherapy and chemotherapy over 3 months. I lost 40 pounds out of my 160 before I started treatment. 15 years later, my "normal" keeps changing daily, but I adapt. My swallowing has got much worse, to the point that I'm now regularly at risk of aspiration and have had one pneumonia and recurring bronchitis. My mouth and throat are quite defective, can't move food around, epiglottis doesn't close off my trachea, upper palate doesn't elevate to block off sinuses, and throat has little motility to move the food down. Eating is one royal mess, and takes literally hours to eat one small, puréed meal. To top it al off, my speech is so deteriorated that I've started using Sign Language (that's another challenge in itself). So I'm seriously looking into a PEG feeding tube, and I'm hoping it will at least ease my feeding, but I'm not so keen on the limitations to social aspects. Still, I'm lucky to still be around. So in your case, I would welcome the feeding tube, as it will allow you to feed without losing too much weight, and that will lead to a faster recovery to your new normal. Best of luck, and as difficult as I know it is, keep as positive an attitude as you can; it really helps. Cheers.
@I am Sherlocked Yes, I got it last November. Huge improvement. Aspiration risk greatly decreased (I hardly ingest anything by mouth, except for occasional tiny sip of black coffee and Nystatin anti-fungal [for thrush]). I feed twice a day: early morning before work ~05:00 and late afternoon after work ~17:00. I don't care to feed at work. One feed session is 2 cans TwoCal (470 calories each) + equal amount water (or sometimes very strong black coffee -- smells like French Vanilla), total takes ~45 minutes. I do syringe only (bolus feed), but slowly reconsidering using bag feed for hands-free at my hobby desk painting minis and building scale models; just need to get a pole or coat rack. I've had a few mishaps, but all in all it's a great improvement. BUT... I miss eating and tasting food.
Thank you Judy/ALS Hope for showing how the feeding tube works and sharing your feelings on having the tube! My Daughter (Sonni) just had a g-tube inserted over this past weekend. She's 2 and half. Its reassuring to hear how much it has helped you in your life as I hope/expect the same for Sonni. :)
@Decoding End Times This will undoubtedly come across as trite, but don't lose hope! I had tonsilar cancer in 2004 (at age 43), treated with radiotherapy and chemotherapy over 3 months. I lost 40 pounds out of my 160 before I started treatment. 15 years later, my "normal" keeps changing daily, but I adapt. My swallowing has got much worse, to the point that I'm now regularly at risk of aspiration and have had one pneumonia and recurring bronchitis. My mouth and throat are quite defective, can't move food around, epiglottis doesn't close off my trachea, upper palate doesn't elevate to block off sinuses, and throat has little motility to move the food down. Eating is one royal mess, and takes literally hours to eat one small, puréed meal. To top it al off, my speech is so deteriorated that I've started using Sign Language (that's another challenge in itself). So I'm seriously looking into a PEG feeding tube, and I'm hoping it will at least ease my feeding, but I'm not so keen on the limitations to social aspects. Still, I'm lucky to still be around. So in your case, I would welcome the feeding tube, as it will allow you to feed without losing too much weight, and that will lead to a faster recovery to your new normal. Best of luck, and as difficult as I know it is, keep as positive an attitude as you can; it really helps. Cheers.
@@patrickdemets6018 hi sir have you get your peg?
@I am Sherlocked Yes, I got it last November. Huge improvement. Aspiration risk greatly decreased (I hardly ingest anything by mouth, except for occasional tiny sip of black coffee and Nystatin anti-fungal [for thrush]). I feed twice a day: early morning before work ~05:00 and late afternoon after work ~17:00. I don't care to feed at work. One feed session is 2 cans TwoCal (470 calories each) + equal amount water (or sometimes very strong black coffee -- smells like French Vanilla), total takes ~45 minutes. I do syringe only (bolus feed), but slowly reconsidering using bag feed for hands-free at my hobby desk painting minis and building scale models; just need to get a pole or coat rack. I've had a few mishaps, but all in all it's a great improvement. BUT... I miss eating and tasting food.
@@patrickdemets6018 hello ...how u doing? R u able to speak now...n is it really enough to eat only 2-3 times though this tube ...
Get a Mickey button feeding tube ,my life changed without the tube , I just connect when I need to use it ❤❤❤❤great invention.
Love you Judy!
Thank you for sharing!
How is she now ?