Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 - you are going to hate me. Ian hasn't touched it once. He just says " ow " if I clean around his nose. He seems to have constant congestion in the nose with the tube and I'm constantly having to clean it out. I threatened Ian and his brother when we got home from the hospital - that if they touched it - he would have to go back to the hospital to put in another one!! I guess that was enough for him - he has never touched it. I can't remember how old Dalia is - maybe that would be enough for her to not touch it as well. Ian coughs and gags occassionally when he eats with it - he's gotten a pea and blueberry skin stuck somehow and coughed it back up - but, he's been able to eat pizza, pretzels, salami, and other stuff with it. I'm wondering if you tempted her with a special treat for not touching it - that would work. Do you check placement with it too with a stethoscope? I was told to do this prior to every feeding - but, I do it once a day - my mother-in-law is a nurse and said that he would turn blue, cough, and gag continuously if it were in the wrong place. As far as it moving out a few inches - it should be taped very securely to her face enough so that it barely moves. You don't see Ian's move much at all. Maybe the fact that it is moving so freely - it is causing her more discomfort. Look at the pictures I posted - you will see how we taped it. Keep me posted. I'm here if you need me. Hugs to you. - H > > Hi Everyone, > Another eventful weekend. Dasia is doing much better though, it was well worth it. She's drinking 2 Nutrens a day by mouth now, since she's feeling so much better. She pulled the ng tube out first thing after we got home, and I hate that thing so much. She coughed, sneezed, and threw up all at the same time when they placed it. Then whenever she'd sneeze, the tube would be forced out a few inches, and even pushing it back in causes all the gagging and sneezing. She's sopposed to be getting 3 cans of Nutren a day, which is so frustrating becuase she has been readily drinking 2. We didn't put the tube back in last night since she had gotten what she needed for the day. And the plan was to put it back in today. I'm very weak when it comes to this. She is not even close to being used to it, how long does it take for them to get used to it, and not want to pull it out? As long as I'm flushing it, and Dasia isn't messing with it, will I be able to keep it in for 3 weeks until her > surgery? And any other suggetions to make this easier would be great! > Thanks everyone for all of your support through this hard time! > > Mom to Dasia > > > > --------------------------------- > Yahoo! Photos > Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 - oh my gosh - I also meant to tell you that I'm so glad she is doing so much better! Thanks for keeping us posted. We were all thinking of you both. - H > > Hi Everyone, > Another eventful weekend. Dasia is doing much better though, it was well worth it. She's drinking 2 Nutrens a day by mouth now, since she's feeling so much better. She pulled the ng tube out first thing after we got home, and I hate that thing so much. She coughed, sneezed, and threw up all at the same time when they placed it. Then whenever she'd sneeze, the tube would be forced out a few inches, and even pushing it back in causes all the gagging and sneezing. She's sopposed to be getting 3 cans of Nutren a day, which is so frustrating becuase she has been readily drinking 2. We didn't put the tube back in last night since she had gotten what she needed for the day. And the plan was to put it back in today. I'm very weak when it comes to this. She is not even close to being used to it, how long does it take for them to get used to it, and not want to pull it out? As long as I'm flushing it, and Dasia isn't messing with it, will I be able to keep it in for 3 weeks until her > surgery? And any other suggetions to make this easier would be great! > Thanks everyone for all of your support through this hard time! > > Mom to Dasia > > > > --------------------------------- > Yahoo! Photos > Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Jeanie - NO - LOL. Actually, I left a message for the GI doc this afternoon to call me. I want to speak with him about Ian's great weight gain and his double chin - and I left a message asking him to confer with our new Endo to talk about the fact that with too much weight gain I'm concerned about the risk of his going diabetic. Ian CAN eat with the NG-tube and such as the case today - he ate so well at lunch - I skipped his noon bolus. So, I'd like to try skipping two bolus' a day and have him eat lunch and dinner volitionally instead. I'm sure the NG tube will not be removed until his G-tube surgery because he still needs the NG for continuous feedings. I've already seen a dip in his b/s when the night feeding was unable to be administered properly because of a pump problem. As far as the tape on his face - it drives us both nuts - but, he's really been a trooper. I'm very proud of his dealing with the whole situation. I think he hates being around children with it more than anything - he's very " aware " that he has something " different " - and he doesn't like that much. When we change the tape every few days - he does cry (he gets food on it) - but, we do it like a band-aid - really quick! Thanks for asking and thinking about us. - H > > > > Hi Everyone, > > Another eventful weekend. Dasia is doing much better though, > it was well worth it. She's drinking 2 Nutrens a day by mouth now, > since she's feeling so much better. She pulled the ng tube out first > thing after we got home, and I hate that thing so much. She coughed, > sneezed, and threw up all at the same time when they placed it. Then > whenever she'd sneeze, the tube would be forced out a few inches, > and even pushing it back in causes all the gagging and sneezing. > She's sopposed to be getting 3 cans of Nutren a day, which is so > frustrating becuase she has been readily drinking 2. We didn't put > the tube back in last night since she had gotten what she needed for > the day. And the plan was to put it back in today. I'm very weak > when it comes to this. She is not even close to being used to it, > how long does it take for them to get used to it, and not want to > pull it out? As long as I'm flushing it, and Dasia isn't messing > with it, will I be able to keep it in for 3 weeks until her > > surgery? And any other suggetions to make this easier would be > great! > > Thanks everyone for all of your support through this hard time! > > > > Mom to Dasia > > > > > > > > --------------------------------- > > Yahoo! Photos > > Ring in the New Year with Photo Calendars. Add photos, events, > holidays, whatever. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 - I was FORCED at the hospital to place the ng tube while I was there to make sure I know how to do it in the event it came out at home. I'm telling you right now. If the NG - tube miracuously fell out at home, car or the mall - I WOULD NOT put it back in myself! LOL LOL - I already have it in my mind that I would go to the ER and make them do it. So, I commend you greatly for doing it yourself. I did it in the hospital and I didn't like it one bit. I also do not believe that I should cause discomfort to my son. Giving a shot, dealing with diaper rash, checking b/s, dealing with other less difficult discomforts are reasonable - but, shoving a tube down my son's nose is not in my realm. I know I could do it or any other more invasive procedure if it were an emergency - but, in my opinion - this is not an emergency for Ian. Again, I'm very proud of you to take it on. Great job! - H > > > > Hi Everyone, > > Another eventful weekend. Dasia is doing much better though, > it was well worth it. She's drinking 2 Nutrens a day by mouth now, > since she's feeling so much better. She pulled the ng tube out first > thing after we got home, and I hate that thing so much. She coughed, > sneezed, and threw up all at the same time when they placed it. Then > whenever she'd sneeze, the tube would be forced out a few inches, > and even pushing it back in causes all the gagging and sneezing. > She's sopposed to be getting 3 cans of Nutren a day, which is so > frustrating becuase she has been readily drinking 2. We didn't put > the tube back in last night since she had gotten what she needed for > the day. And the plan was to put it back in today. I'm very weak > when it comes to this. She is not even close to being used to it, > how long does it take for them to get used to it, and not want to > pull it out? As long as I'm flushing it, and Dasia isn't messing > with it, will I be able to keep it in for 3 weeks until her > > surgery? And any other suggetions to make this easier would be > great! > > Thanks everyone for all of your support through this hard time! > > > > Mom to Dasia > > > > > > > > --------------------------------- > > Yahoo! Photos > > Ring in the New Year with Photo Calendars. Add photos, events, > holidays, whatever. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 - one more thing. Did the hospital give you the extra NG tube or did you get the ones that come with the pump. I LOVE the one Ian has from the actual hospital. It's longer than the others, it's more flimsy (there is a wire inside you have to pull out while you administer it) and I think because of it's flimsiness and weightlessness - Ian finds it more comfortable. - H > > > > Hi Everyone, > > Another eventful weekend. Dasia is doing much better though, > it was well worth it. She's drinking 2 Nutrens a day by mouth now, > since she's feeling so much better. She pulled the ng tube out first > thing after we got home, and I hate that thing so much. She coughed, > sneezed, and threw up all at the same time when they placed it. Then > whenever she'd sneeze, the tube would be forced out a few inches, > and even pushing it back in causes all the gagging and sneezing. > She's sopposed to be getting 3 cans of Nutren a day, which is so > frustrating becuase she has been readily drinking 2. We didn't put > the tube back in last night since she had gotten what she needed for > the day. And the plan was to put it back in today. I'm very weak > when it comes to this. She is not even close to being used to it, > how long does it take for them to get used to it, and not want to > pull it out? As long as I'm flushing it, and Dasia isn't messing > with it, will I be able to keep it in for 3 weeks until her > > surgery? And any other suggetions to make this easier would be > great! > > Thanks everyone for all of your support through this hard time! > > > > Mom to Dasia > > > > > > > > --------------------------------- > > Yahoo! Photos > > Ring in the New Year with Photo Calendars. Add photos, events, > holidays, whatever. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Max had an ng tube for 4 years. We never had any complications. It was relatively easy to insert, although there were times I just could not get over that hump in the back of his throat. We both cried then. Max tried so hard to cooperate and I was hurting him. Yuck. Then he would hug me when it was all over and tell me it was okay. I kept apologizing to him and sobbing and he was the one doing the comforting! We used to keep that tube in place for as long as we could. It usually lasted for about three weeks. Sometimes, like if he had a cold, we had to replace it sooner, but usually not. Jodi Z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Jeanie - yes my dear - let him cry it out. He's testing you. And, it usually takes 3 nights - but, hopefully only two for you. He won't hate you either. He'll respect you more. Trust me. My children are great sleepers. I had to play the game a few times (still do occassionally) but it works every time. Ian sleeps 12 hour nights and 2-3 hour naps during the day. Xander sleeps 10-11 hour nights - but, as a baby - did the same as Ian. Sleep is very important for me - so, it was necessary for my children to be sleeping too. You are doing fine. Honest - he won't hate you - I promise. My children don't hate me. (ask me when they are 16 though and they might tell you otherwise! LOL) - H > > > > > > Hi Everyone, > > > Another eventful weekend. Dasia is doing much better > though, > > it was well worth it. She's drinking 2 Nutrens a day by mouth now, > > since she's feeling so much better. She pulled the ng tube out > first > > thing after we got home, and I hate that thing so much. She > coughed, > > sneezed, and threw up all at the same time when they placed it. > Then > > whenever she'd sneeze, the tube would be forced out a few inches, > > and even pushing it back in causes all the gagging and sneezing. > > She's sopposed to be getting 3 cans of Nutren a day, which is so > > frustrating becuase she has been readily drinking 2. We didn't put > > the tube back in last night since she had gotten what she needed > for > > the day. And the plan was to put it back in today. I'm very weak > > when it comes to this. She is not even close to being used to it, > > how long does it take for them to get used to it, and not want to > > pull it out? As long as I'm flushing it, and Dasia isn't messing > > with it, will I be able to keep it in for 3 weeks until her > > > surgery? And any other suggetions to make this easier would be > > great! > > > Thanks everyone for all of your support through this hard time! > > > > > > Mom to Dasia > > > > > > > > > > > > --------------------------------- > > > Yahoo! Photos > > > Ring in the New Year with Photo Calendars. Add photos, events, > > holidays, whatever. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 HI! I am glad Dasia is doing better! I HATED the ng tube and loved it at the same time because it was a lifesaver for Autumn. I have to say the g-tube is so much easier to deal with for everyone. The gagging and vomiting never ended for her with the ng although I believe she only had hers for 10 or so days. It did get better over time but never went away. The tape around her nose always got wet from a drippy nose and came of. It would pop out some too and she would gag as I put it back. We used something called DuoDerm...fake skin tape then put the tube over it and and taped it to the DuoDerm with clear Tegaderm tape. The DuoDerm stays on the skin very well regarless of moisture and the Tegaderm didn't come off as quick as it did on bare skin. That was the tape on the cheek but it was tought to get it closer to the nostril and that is where they really need the secure hold to keep it from popping out. one thing I found work very well around the nose area to hold the tube secure is the nasal oxygen sticker things at the hospital, at her hospital they were brown circles with some tape on top that are used to hold the nasal oxygen tubes in place, or in our case an ng tube in place. They stay secure and hold the tube still. Also, I never placed the ng tube. I had the kit too and checked for air/placement but just couldn't handle the thought of doing it on my own. We had a home care nurse available 24/7 and I was told just to call them if it was needed. I was given that choice although I was shown how to do it on my own. If she would have needed it longer than that short period of time, then I would have done it. Also, Autumn never pulled at hers. She is oblivious to so much. She doens't mess with her g-tube or earings either. The g-tube will seem like a piece of cake compared to this. Good luck! mom to Autumn RSS, Summer SGA, OCean, Skye > > Hi Everyone, > Another eventful weekend. Dasia is doing much better though, it was well worth it. She's drinking 2 Nutrens a day by mouth now, since she's feeling so much better. She pulled the ng tube out first thing after we got home, and I hate that thing so much. She coughed, sneezed, and threw up all at the same time when they placed it. Then whenever she'd sneeze, the tube would be forced out a few inches, and even pushing it back in causes all the gagging and sneezing. She's sopposed to be getting 3 cans of Nutren a day, which is so frustrating becuase she has been readily drinking 2. We didn't put the tube back in last night since she had gotten what she needed for the day. And the plan was to put it back in today. I'm very weak when it comes to this. She is not even close to being used to it, how long does it take for them to get used to it, and not want to pull it out? As long as I'm flushing it, and Dasia isn't messing with it, will I be able to keep it in for 3 weeks until her > surgery? And any other suggetions to make this easier would be great! > Thanks everyone for all of your support through this hard time! > > Mom to Dasia > > > > --------------------------------- > Yahoo! Photos > Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 > She messes with everything, including her earrings. She has >pulled out and lost 5 pair, but I finally found infant earrings with >screw on backs at JCPenneys. Just a thought, . . . but she may be extremely sensitive to things and they might be driving her nuts. I can only stand earrings for a short period of time. Bracelots drive me bonkers. If I remember my reading material, RSS children can be ultra sensitive, which is one reason they have eating issues. Dianne - Ian's grandmother Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2006 Report Share Posted January 11, 2006 I am so glad thing are working out so well! Daisa's plan is very similar to Autumn's. With the ng tube she was actually getting 6 oz 4-5 times a day. She handled it but it jsut seemed to be too much at a time for her. She did throw up sometimes. We kept her like that until her g-tube, then it was 4 oz every 3-4 hours 6 times a day also. That was 3 cans and 750 cals and they said that was good to maintain and instead of working up to any higher amounts of calories, we began to try to get her to eat and cut back on the feeds. It took a few weeks but finally she was eating her basic small normal amount so we began to do only 1 can at night. We give her 4 oz before bed, and 4 more oz before I go to bed, which is usually after I post here! That is her 'extra' calories to help her gain on top of her normal maintainance eating. She just had her 2 yr check up and was 17 13 and 30 1'4 inches. she has lost some ounces in the past couple of weeks and I don't know why. She is gaining overall but very slowly. Her gi doc said that at 1 can a night she should gain a pound every hmmm, it was either 4 or 6 weeks. He did mention I could go to 5 oz before bed and 5 oz again later. That is 60 extra cals so it would be 310 extra a day. Overall, she is doing much better. I have to say that at first the extra weight was noticable, but then she grew a little not too long ago and stretched back out! So I am working on it! She is not eating much now. She has a cold and just nibbles so I am trying to figure out just how much peptamen to get in her to help her out here. mom to Autumn, Summer, Ocean, Skye > > > > Hi Everyone, > > Another eventful weekend. Dasia is doing much better though, > it was well worth it. She's drinking 2 Nutrens a day by mouth now, > since she's feeling so much better. She pulled the ng tube out first > thing after we got home, and I hate that thing so much. She coughed, > sneezed, and threw up all at the same time when they placed it. Then > whenever she'd sneeze, the tube would be forced out a few inches, and > even pushing it back in causes all the gagging and sneezing. She's > sopposed to be getting 3 cans of Nutren a day, which is so > frustrating becuase she has been readily drinking 2. We didn't put > the tube back in last night since she had gotten what she needed for > the day. And the plan was to put it back in today. I'm very weak when > it comes to this. She is not even close to being used to it, how long > does it take for them to get used to it, and not want to pull it out? > As long as I'm flushing it, and Dasia isn't messing with it, will I > be able to keep it in for 3 weeks until her > > surgery? And any other suggetions to make this easier would be > great! > > Thanks everyone for all of your support through this hard time! > > > > Mom to Dasia > > > > > > > > --------------------------------- > > Yahoo! Photos > > Ring in the New Year with Photo Calendars. Add photos, events, > holidays, whatever. > > > > Quote Link to comment Share on other sites More sharing options...
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