July 31, 2008,
T.P. asks from Sullivan, OH on July 28, 2008
4 Month Old Has G Tube (Mic-key Button)
i was just wondering if any other mothers have had this happen to them. my 4 month old daughter asperates into her lungs when she eats and also has moderate GERD which almost a week ago she had to have surgery to put in the g tube (mic-key button) and she had a nissen done. my question is how long have your babies had to have the g tube in?? her doctors have not given me a time line on when it will come out. thank you for your responses in advance.
S.W. answers from Toledo on July 29, 2008
I had a 5 day old grandson who was having reflux problems and we put him on a nutrition process instead of meds and he has been fine ever since. He is two years old now and never had to go on meds and has not had the problem since. There absolutely is a nutrient thing going on here as well. I would certainly suggest to put your little one on a good vitamin regimin than keep him on meds. Good Luck
R.K. answers from Cincinnati on July 29, 2008
Have a 9 year old with a Mickey, and this is what I was told. You child will need to show that she can eat/drink on her own without any problems. The feeding team at Cincinnati Children's Hospital can work with you both to achieve this goal. It will take time.
J.F. answers from Cleveland on July 29, 2008
Granted my son is severely disabled, he just got his feed tube as well as a nissin and a couple other procedures done a yr ago. Your dr didn't tell you how long she would have it? Are you still feeding her any food at all, or is she all tube feed?
I know some kids who have had ot forever and some who have had it for a couple of months to a yr. It will pretty much depend on how your daughter reacts to food when it is fed orally as well as how her gerd is. It is hard to tell. Has anyone mentioned any type of therapy to help her with her swallowing? If she is asperating in her lungs, it sounds like she is having issues with her swallowing. That can be helped with a speech threrapist.
A.H. answers from Columbus on July 31, 2008
My son had a g tube for 7 months. When asking about time we never got a specific answer. It all depends on the individual child and their recovery rate. With Thomas's tube it just became second nature to have it, clean it and deal with it and I have 3 older children as well. In time this to shall pass and be a distant memory. Stay patient knowing its all for the best!
A.S. answers from Lima on July 29, 2008
my daughter is almost 7 months old and has had an ng tube for almost 4 weeks now. on the 7th of aug. she goes in for the g tube surgery. the time frame that they gave me is that she will have numerous swallow studies and when they start to come back normal then they will remove the tube. they will recheck her swallowing and as long as she is doing great then they won't have to reinsert it. they told me that she was asperating but when they did a chest x-ray it showed no signs of asperation! we are all a little confused. but her weight gain has been a success! hope everything works out for you.
C.B. answers from Lafayette on July 31, 2008
for some infants/toddlers can be for only a few days, and for others it might be a week, month, year, or permanent. you should call your doctor & ask if they can give you a time frame, most will just say "we'll monitor her for a while & see you back in so many weeks". the trick is to keep them from laying flat, i found that using small 6inx6in piece of 2x4 lumber under the legs at the head of the crib works well. keep your baby up in a carrier carseat for at least 30min. after she eats, & don't lie her on her stomach to sleep. good luck & God be with you.
D.B. answers from Bloomington on July 29, 2008
Hi T.. My son also was diagnosed with aspiration into his lungs and GERD but at 6 weeks old. He had a nissen and a g tube put in. His is currently 15 months and still has his nissen. They should do periodic swallow studies to see how your daughter is progressing in her swallowing abilities and give you the okay to start feeding by mouth according to those studies. They will typically start with puree's (stage 2 baby foods) because those are actually the easiest for them to swallow without aspirating. They will also check different thicknesses of liquids (formula, breastmilk, etc. thickened usually with rice cereal). Then it is just a matter of your daughter being able to take enough by mouth to get the nutrition she needs to be able to take out the g tube. My son ended up with pretty bad oral aversion (though he has to have a trach tube for breathing difficutlies and it wansn't until that was put in that his aversion started). I had a wonderful therapist through First Steps work with him and we have been able to make great strides in his eating and taking things in his mouth. So you don't get to discouraged with how long my son has had his, I firmly believe he would be ready for it to be taken out already if he didn't have other health problems that make him sick a lot a not willing to keep up with his eating by mouth. Hang in there, your daughter will get through this and be just like other infants soon!
S.B. answers from Muncie on July 29, 2008
My son was diagnosed with aspiration and GERD. At the last swallow study he had aspirated everything, so he had gotten worse. The SLP sent us directly to our devolpmental peds since our pulmonologist was not there at the time. The dev. peds gave him two meds to help with reflux and sent us to a speech path. to work on techniques before he had the g tube put in. As mothers wrote before me, we thicken his milk with pudding and juice with applesauce. I would talk to your dr. and maybe see a SPL. I will say my son is doing much better now that he has been on the two meds, poor guy was diagnosed really late (7mo.).
Hope this helps. It will get better, I know exactly what you are going thru.
H.J. answers from Columbus on July 29, 2008
Hello. Been there, done that. :) As I recall, it has been a very long time since my now 14 yr old son had that done, it seemed like it was a rather short period of about 6-8 weeks. They are going to make sure the nissen is in place and everything is healed properly before beginning to feed orally again. I know its a hard time for you right now, but I really think you will see a massive improvement with the gerd. We did and it really made an overall difference in our son's health conditions. Be patient and know that it will only be a little while before this is over and you are looking back on this as just a drop in the bucket compared to a sea of good memories.
A little about me: I'm the proud mamma of 2 wonderful boys, 14 & 16 who both have cystic fibrosis. Married to my best friend for 6 years and loving life!
B.M. answers from Cleveland on July 29, 2008
All 3 of my sons aspirated (dysphagia), but the speech pathologist had us thicken the milk instead of using a g-tube. In some ways, the tube would have been easier, since it took 2 hours per feeding much of the time! In any case, they all gradually outgrew the aspirating... they did not do well with runny baby foods (had to thicken those, too), but as they transitioned to finger foods it became easier. It varied, but was around 10 months with each of them. I know this sounds IMPOSSIBLE to survive that long right now. You'd better believe I struggled with some depression when my third son started doing the same thing (it does tend to run in families, we were told), but he's 3 now and it's a distant memory. In some ways the third was the hardest because I pumped for him for over a year and also because I knew it was going to be such a long time, but there was some relief in having a diagnosis. With the first two, we struggled along and wondered why on earth they kept crying when they were nursing. We never found out what it was with #1 (he actually became content to drink his bottle flat on his back at 3 months old), and we finally had it diagnosed when #2 was 5 months old. So I guess the bright side is that you know exactly what is going on and you know it won't last forever. I have 2 friends with handicapped children that still have g-tubes at 5 and 7 years old.
Hope that helps!
D.M. answers from Columbus on July 28, 2008
Before I had my son (six months ago) I worked at children's hosp. in the OR. There is really no set time that your daughter may need her g-tube. My guess would be that she will need it until she is able to safely eat without asperating any food. My advice would be to call your surgeon's office and ask. Only he/she would be able to give you an accurate answer.