Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Hey maloy, I just bought a soft child's tooth brus. I re-influate the balloon, and carefully brush it to get rid of the brown/black residue that builds up. One of the mom's at the convention told me to take a pipe cleaner, and run it through the button to get rid of any build up there. It has worked well. When all is clean, I use a little vaseline on the tip of the button, pop it back in, and re-inflate the balloon. The first time I did this, it was nerve racking , now it's old hat. My 13 yr old has been trained and can now change, or re-insert, 's button like a pro! hope this helps Pat (g-ma to , RSS, 21.5 months, 19# 5oz, 29.5 " , Prevacid, Zantac, Singulair, GT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Pat What are you using to clean the mic-key button and the balloon with. We were told it just needed to be change every 4-6 months but never removed once a month and cleaned. I was thinking that may help with Tori's granulation tissue growth around the site Maloy Re: 23 hr feedings - AMY Hi Amy, This is Pat, 's g-ma. is continuously fed via g-tube. This is what we were told to do by Dr H herself! LOL is to be vented for a full 15 min every 6 hours. If we have problems with gagging/retching, then we are to move the schedule to venting for a full 10 min every 4 hours, with additional venting for 5min with each gagging/retching episode. I've been hearing wonderful things about this Farrell valve, and venting all night long. Dr H, also, told us that the cc/hr rate needs to be lower at night, and can be upped during the day. currently runs at 33cc/hr from 8am-10pm, and 25cc/hr from 10pm-8am. The highest we have ever been able to get his night time feed rate is 28cc/hr. Anything higher and he is gagging/vomiting by 6am. A few questions. How much does Avery weigh? Who decided his cc/hr rate, and how did they calculate it? For severely underweight children, Dr H uses 160kcal/kg, but that is graduated down as the child gains weight. is currently on less than 100kcal/kg. Actually, got SO chunky, he is kind of on a diet now! LOL Did Avery have a fundoplication when his g-tube was placed? A fundo will help lessen reflux, but doesn't stop it entirely, and can be common cause of the gagging/retching cycle. Is Avery on any reflux reducing meds? These have really helped . He is currently doing Prevacid in the morning, and Zantac at night. This regimen is working a lot better than just Zantac alone. As far as I know, it is not normal to have that much leakage from around the button. It sounds like he has a lot of pressure in his tummy. Do you use a pad/dressing to absorb any leakage? We use a pre-cut 2x2, and it works great! When I have , I change this twice daily, and I think his mom does it once a day. How much water is in the balloon for the button? Do you check this regularly? leaks more when his balloon has deflated some. It was explained to me that the balloon on the end of the button is like a helium balloon. It is porous, and can lose water, just like a helium balloon loses air. I check 's balloon once a week. It is usually .5-1cc low. I extract all the fluid and replace it with fresh sterile water. We were also told by Dr H, that the entire button should be removed once a month, thoroughly cleaned, then put back in with fresh sterile water for the balloon. Lastly, it is absolutely possible to aspirate reflux. has done so many times, and it has been party to the damage done to his lungs. I would have him tested for reflux, and put on meds. This will greatly lessen the chance of aspiration pnuemonitis. Avery sounds so cute with the Bob, the Builder backpack on wheels! You should post a pic of him with it. I would love to see it! Isn't it amazing the way these kids adapt to life? dazzles us with his brilliance often! LOL Feel free to email me privately at pcpets@... anytime. I remember how helpless I felt when B was having the same problems, and would love to help. Pat (g-ma to , RSS, 21.5 months, 19# 5oz, 29.5 " , Prevacid, Zantac, Singulair, GT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2003 Report Share Posted October 9, 2003 Hi Pat When you take the tube out to clean, do you cover the stoma with anything? Jody > Hey maloy, > > I just bought a soft child's tooth brus. I re-influate the balloon, and > carefully brush it to get rid of the brown/black residue that builds up. One > of the mom's at the convention told me to take a pipe cleaner, and run it > through the button to get rid of any build up there. It has worked well. > > When all is clean, I use a little vaseline on the tip of the button, pop it > back in, and re-inflate the balloon. The first time I did this, it was nerve > racking , now it's old hat. My 13 yr old has been trained and can now > change, or re-insert, 's button like a pro! > > hope this helps > Pat (g-ma to , RSS, 21.5 months, 19# 5oz, 29.5 " , Prevacid, Zantac, > Singulair, GT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2003 Report Share Posted October 10, 2003 I have a question....If you take the button out to clean it once a month (something we were never told to do), how do you keep the stoma from closing up? I know that Max's used to start to close up within minutes. In fact, one time we had to spend Christmas Eve in the ER because it closed up so quickly that we needed someone to stretch it for us so that the button would fit back in. Jodi Z. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 2003 Report Share Posted October 11, 2003 Hey Jodi, I've never had a problem with the stoma. But then again, I make sure that I have everything ready to go BEFORE I even start. The whole thing took maybe 10 minutes the first time, and goes much quicker now that I am confident with what I'm doing. I would NEVER leave the button out any longer than absolutely necessary, but I don't think it would be good for to leave all the brown/black residue build up on the button/balloon, or in the stoma either. Pat (g-ma to , RSS, 21.5 months, 19# 5oz, 29.5 " , Prevacid, Zantac, Singulair, GT) Quote Link to comment Share on other sites More sharing options...
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