NJ Tube

[Anonymous]

So if any of you have read my first post you will know that we have been battling severe acid reflux for about 2 months now. We started out on the prevacid compound at 7.5MG per day for a few days it worked wonders and then I was sure the dose needed to be increased when we started to see symptoms again. My son (hunter) has reflux to the point that he stops breathing and sometimes literally chokes on the milk he is refluxing. I finally had enough of him turning blue and took him to the ER about 2 1/2 weeks ago. They admitted him and told me his prevacid dose could not be increased as he was already maxed out. Tried thickening feeds 1 table spoon per ounce of milk and added pepcid. They released us after 48 hours of no blue spells and said the problem was solved however I knew it wasn’t. We went home for the night and had to return to our local hospital for hunters spina bifida clinic the next day. In between appointments we went for some lunch and while we were sitting in the car eating out of no where hunter coughed twice and I heard something lodge and he couldn’t breathe. I had to do CPR for over 5 minutes while we rushed him back to the hospital. I really thought he was going to die in my arms as he did not take his first breath until we literally walked through the hospital door. They admitted us again and we have been here for about 2 weeks now. They brought a GI specialist in who put down a PH probe for 2 days. The results showed he has very frequent reflux and it stays in his esophogus for abnormally long periods of time. He said some was acidic and some was neutral and they finally increased his prevacid to 15MG a day. They told us our only options were either the nissan surgery or an NJ feeding tube. We opted for the NJ because we do not want to put hunter through a 3rd surgery with him being only 3 months old. I however am not satisfied with this resolution either. I hate the fact that for the next 2-3 months he will have to eat from a tube hooked to a machine 20 hours out of the day and that he will always feel hungry because his belly has to remain empty. I am DESPERATELY seeking help from anyone who has had any issues with this as well. Hunter refluxes alot but he never cries only grunts. We keep him propped up and know to avoid car seats bouncy chairs etc. Thickening his feeds did not seem to help at all. Actually I think he threw up MUCH MORE on the thickened milk. I am also wondering if his last choking episode was so bad because the milk was thicker and therefor he had more problems clearing it?? Like I said anyone that has had this issue PLEASE tell me what has helped you. I am about to resort to feeding him 1 ounce of milk every hour just so he doesn’t have to have that tube down his throat however I am not sure ever that would prevent the choking and in some ways am afraid to even try it. Pleas help!!

[hellbennt]

has he had a SWALLOW STUDY? if not, I would demand one. this looks at the mechanics of swallowing & also looks for aspiration.

[Anonymous]

I would also asked to have a gastric emptying scan done to see if he is processing his food and an endoscopy to see if things are normal in there.

[Anonymous]

I feel so badly for you! No baby or parents should have to go through so much trauma!!! 🙁 You asked “What did we find that helped?” Well, I always thought my children had it bad until I came on here and read other places on line about babies with reflux and much worse. I decided to view my children as mild! My children suffered from GERD and milk intolerance. (I normally say suffered “severely” but I think I’ll leave that out this time.) Here is a link to read my story on line about the things I found that helped. http://www.corehealthproducts.com/testimonial-pdfs/a-mothers-cry.pdf I know that looks like advertisement but my story is long and detailed and so it’s easier to post that link. I shared my story with the company that helped me so much and where I buy my probiotic/enzyme supplements and they made it into a pdf to make it easier to share. Although it might help some, I am not at all saying that what’s worked for me would be a cure or fix for your baby, but just thought you might find it of interest. The owner of the company (Shan Stratton) and his assistant (Chris)have both done a lot of research on digestive problems. They have many people call them and just ask questions without buying their product. 602-432-9479 or 800-342-4792

I hope by now you have already found some help! I am so sorry for you! I have only read and heard of babies that stop breathing from reflux so I can only imagine how scary that must be. And I’ve only had one of my boys go through a surgery but still nothing compared to your baby!

[Author]

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