Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Have they tried a ng-tube it goes from the nose to the tummy and can be placed every night and taken out in the morning.You can place it your self after they show you how using a stethscope.They are easy and not permanent we used them for 6 months with Rebekah before she had her tube put in at 8 months.Your husband needs to talk with the doctors and listen to why they want to put a tube in .The reasons are usually to give the child the help they need.He should look at the help as just that help it doesn't mean failure, or the end it is like a person who Needs crutches or glasses it helps .I wish you the best.Keep in mind your husband doesn't have to give his approval for ANY treatment YOU do.Do the best you can do.Good Luck.BeckyB.--Mama to 8 kids-2 w/cf--Nana to--2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Hi All, I have an 8 year old with CF. The doctor wants to put in a feeding tube. (for night use only)She is not gaining the weight that she needs to gain. Her Doctor had put her on a med that makes her gain. But, we had to take her off because her blood sugar was to high. So she lost all the weight that she had gained. My husband is dead set against the feeding tube. But, I don't know what else to do. I need some advice. Should I or Shouldn't I? Please help. I am new to this group so bear with me. Email me at any time Robin mother of 2 1 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Hi Robin, I guess if it were me and I decided my child needed a g-tube (and that is what the docs say), I would have to convince my husband that this is the right thing to do. Has he been to your daughters clinic visits? Maybe the docs need to explain it to him. I hope this helped. My daughter never needed a gtube so I am no expert on them. love, M Mom of Nick age 21 nocf and age 19 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Robin, My daughter got her g-tube at 16 months. We were very reluctant to do it but in the end it helped. I was less worried about the g-tube than the nissan fundoplication (reflux surgery) that happened at the same time. we are happy that she has her g-tube because if she has a bad day for eating, we can just give her a bit more in her feed. Also if she is being grouchy about her oral meds we can shoot them through too! Meals are less of a battle now and we are not constantly worried about how much she has eaten. One of the things we were worried would happen with the tube feed was that she wouldn't want to take anything orally, but we found as long as she didn't have a tube feed right before a meal or snack, she ate about the same amount. Hope this helps! Mom of 5 with CF Feel free to check out our " adventures in g-tubeland " page at our group http://groups.msn.com/TeamJane G Tubes Hi All, I have an 8 year old with CF. The doctor wants to put in a feeding tube. (for night use only)She is not gaining the weight that she needs to gain. Her Doctor had put her on a med that makes her gain. But, we had to take her off because her blood sugar was to high. So she lost all the weight that she had gained. My husband is dead set against the feeding tube. But, I don't know what else to do. I need some advice. Should I or Shouldn't I? Please help. I am new to this group so bear with me. Email me at any time Robin mother of 2 1 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Hi Robyn, I have never dealt with a g-tube, but it is very important for people, young and old, with cf to keep their weight up. It has to do with their inmune system, and being able to fight possible infections. If the child/adult is not absorving the vitamins, mineral, nutrients as a whole, it leaves the body open to opportunistics infections. This disease is a bugger and I do know about opportunistic infections in a's lungs. Your husband needs to see the whole picture. Wish you all the best, mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf > Hi All, > I have an 8 year old with CF. > The doctor wants to put in a feeding tube. (for night use only)She is > not gaining the weight that she needs to gain. Her Doctor had put her > on a med that makes her gain. But, we had to take her off because her > blood sugar was to high. So she lost all the weight that she had > gained. > My husband is dead set against the feeding tube. But, I don't know > what else to do. I need some advice. > Should I or Shouldn't I? > Please help. > I am new to this group so bear with me. Email me at any time > > Robin > mother of 2 > 1 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Robin, Hello and welcome. Is your little girl on the growth charts? I was just wondering how thin a child has to be, before a doctor recommends a feeding tube. Gale > Hi All, > I have an 8 year old with CF. > The doctor wants to put in a feeding tube. (for night use only)She is > not gaining the weight that she needs to gain. Her Doctor had put her > on a med that makes her gain. But, we had to take her off because her > blood sugar was to high. So she lost all the weight that she had > gained. > My husband is dead set against the feeding tube. But, I don't know > what else to do. I need some advice. > Should I or Shouldn't I? > Please help. > I am new to this group so bear with me. Email me at any time > > Robin > mother of 2 > 1 w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 I used a ng-tube for 6 months with Rebekah while breastfeeding .If not during a feeding she would blow everything back up the syringe.We used hers for bolus feedings which are usually small frequent amounts .Rebekah weighed at birth 7.8 being a month early steroids and gest.diabetes gave her the extra she needed at 8 months she weighed 11.8 pounds.She had severe reflux it was apparent the tube was a life saver along with a nissen fundoplication.We took her mic-key out on her 5th b-day.At 6.9 years she is 43.5 inches (or more) and 41.5 pounds.As I am a small person (5.1 and 105 lbs.). I was 45 pounds at 7 so I don't expect a giant .Considering she has psuedo and B.cepacia I think she is doing great. I don't think doctors recommend surgery without just cause. I think parents have a responsibility to educate themselves for the best long term outlook for their child .I am not a pessimist or an optomist I am a Realist and the reality of cf is it is progressive and the healthier our kids are the better their future is.We have personally been fighting cf for 20 years and 5 days my 2nd child has cf and Monday was his 20th B-day.Good Luck .BeckyB-Mama to-8- 2w/cf--Nana to 2. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 My daughter had a g-tube and I too can say it was the best thing we ever did! What is he scared of? I agree that he should talk to the doctors. Lynette Carwana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2003 Report Share Posted December 11, 2003 They want to give maddie one to Im scared about it Quote Link to comment Share on other sites More sharing options...
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