New here! Any advice will be greatly appreciated!

Beth - posted on 08/24/2009 ( 5 moms have responded )

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Hello, My son is in the process of having to get a feeding tube. He hs been follwed b the feeding team since birth (now 15 months) because of many feedng issues. First he had a poor suck, and ha to use a Haberman nipple for feedings. He soon grew out of that. He has had some degree of aspiration since has been born, and we had to thicken his formula with thick it. Now, he is still aspirating, and will not gain weight. They sent usto speak with the surgeon, and he sai he does deffinately need a feeding tube. What advice can you give me? I am new to this and know nothing about how to care for it or anything. I have heard several mothers say they love the tube, and then others with horror stories. I know every child is different, but what has your experience been?Thanks in advance

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Sarah - posted on 10/07/2009

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Hi, my name is Sarah. My son who is now 5 years old has many of the same issues as your son. He had his g-tube placed when he was 6 months old along with the nissen. He also has seizure issues. Having the tube took a lot of getting used to but was good for him and us. I will never forget those first nights he slept more than 2 hours. He was aspirating food into his lungs and we didn't realize he had problems until we switched to bottle feedings. The doctor we had at the time was only a family practitioner and wanted to blame his feeding issues on allergies >:( We finally go ta referal to a pediatrician and she saved our sons life. I really hated the pump at night especially when he started moving around more so we found a schedule that worked for us to do boulous feeds. We have a great routine and i think it made his life so much better.

Marina - posted on 09/11/2009

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HI, My daughter has had her gtube for 3 years now, It has worked great for her.

and have learned the ins and outs....if you have a specific question feel free to

email me. It will free up your world, and make going out a breeze. I feed her every

where and anywhere when were out. If its a public area, thats fine too, on lookers

can look away or deal with it...lol

Take care....Marina

Laura - posted on 08/26/2009

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If only I had know before what I know now! Mason didnt have the nissen done till 07/15/09.....he has terrible reflux.....he had a ph probe done late june or july and our new GI said he would have thought the equiptment was broken if he didnt see Mason for himself.....Smart to have the nissen and g-tube done together....our previous GI didnt believe in doing he nissen.....mason was instantly better after the nissen.....plus after he had his gtube it took so much stress off everyone with trying to feed him....i think the hardest thing to get used to was being able to feed him when he is sleeping.............it's just like when your first few days home with a newborn....hard at first until you get used to the routine .....it does get easier over time......I will say that I would recommend talking to the Dr's about pain management after surgery......due to Mason's medical issues he has a very low tolerence for pain.....with his gtube he had tylenol/codine after surgery........he was in so much pain i demanded a codine iv....which they did give him.........after a couple days he was fine.......with his nissen surgery I made sure to talk to the surgeon during consultation and he was put in picu for 24 hrs after surgery to be monitored.....he had an epidural in for 3 days after surgery with pain meds and was also give tylenol/codine..........Please remember every child is different......My road with Mason has been very bumpy......I used to hate when people used to say they were an advocate for their child.........now i proudly say that I am my child's advocate.........remember you are your son's voice.....don't ever feel bad about questioning a doctor, procedure or medication.......you know your child best.......

please let me know if I can be of further assistance.........


ps the gtube is great for meds you will no longer have to worry about the awful taste or them spitting it out....Mason is 100% tube fed ......

I also take Mason to Cleveland Clinic for treatment....still hasnt been diagnosed.....we have another appointment in early september..........

keep me posted....BTW I have heard amazing things about Duke....please let me know what you think :)

Beth - posted on 08/26/2009

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Thank you for your imput, and your warm welcome! We go next Wednesday to talk with a Pediatric Surgeon at Duke. We were not happy or impressed with the last surgeon we talked with, and come to find out he is not even a Ped Surgeon, heis just filling in because the Ped surgeon in our area left. Anyway, we were told that Gage would have to get the Nissen due to his reflux. It was a very hard decision for my husband and I to go forward with the tube. He has already been through so much in just the short time he has been alive, and to watch him have to continuously go through all this is more than heart breaking. One good thing is he will no longer have to endure the awful tastes of his medicines that he gets morning and night. I feel like I am torturing him everytime it is medicine time. I was reading sme of your older posts,and seems our boys have alot in common. Gage also has a seizure disorder and seizes almost daily, and is also developmentaly delayed. I am glad to hear the tube is working so well for you and your little one, and thanks again!

Laura - posted on 08/26/2009

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Hi! Welcome! My son got his peg tube when he was 10 1/2 months old....It was a hard decision but well worth it! He was failure to thrive. was the size of a 3 month old when he was 8 months old! always had feeding issues....once you get used to the tube and feedings it becomes second nature..takes a little planning when you go out for the day but I think it is just like when you have a newborn and you take them for their first outing.....he now has mic-key tube....I have changed it several times myself and never have had a problem! My son also has had many hospital stays due to pneumonia....he just had the Nissen surgery in July....what a difference it has made..... I think the biggest hassle I have is the feeding supply company getting out order right and on time on a monthly basis......i think the biggest thing for me was to ask as many questions as i could while I was in the hospital....the nurses are a big help as far as care and helping you get used to the feeding pump etc....I think it took me a week at home on my own and I was ok........let me know if I can answer any questions.....

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