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So, we got the gtube put in last Tuesday and left the hospital Thursday evening. It was only the 3rd procedure done at our hospital that was a straight to mic-key -using pegs. Thankfully the surgeon had done it many times before at his former hospital! Anyway, he wanted us out of hospital so that our baby wouldn't be exposed to illness and she was tolerating her feeds. Any special advice for me??
Heart disease Congenital heart disease Constipation Surgery Pain Memory CPAP Tube feeding Fever
My best advice is to keep the area dry, I use an inf ant wash cloth after each feeding and slightly shimmy around the button. I find that guaze left around the button causes my daughter's skin to break down. If the area starts to look mean I clean with Dial soap and then I dry and apply Bactorban. Get advice on how to replace so you are prepared before it happens. I find running the feeding tube through the pants leg or diaper eliminates pulls on the actually mickey. Good Luck!
I have just noticed today that there is more watery blood around it.. not much but.. ive also read that cleaning it too much is bad for the skin, so im doing what you suggested.. often using a qtip or facecloth. how long have you had the tube? does your baby take anything oral? how old?
thanks :)
We use Calmoseptine (I think I ordered on-line from Walgreens) as a barrier to keep the area dry. I also know a mom who used Hibicleans (a soap) on her son's site b/c they had problems w/ it getting infected (I wouldn't use this too often though). After we applied the Calmoseptine we would place an IV sponge. I highly recommend ordering IV sponges to place around the site. They are lint-free, so they won't "stick" to any leakage. We found that regular gauze would stick to the site and then it would bleed when removed. IV sponges also have a slit cut out, so they fit perfectly around the site and you don't even have to use tape.
We also would tuck the feeding tube through our son's diaper and down his leg to help keep it from tugging while he slept. We did overnight feeds when my son was about 11mo to 13mo.
When Bren got his g tube they used the 2 by 2 guaze squares to help keep it dry. you can also use these to help clean the area. You get a piece of guaze wet and you put if around the tube and then let it set. When you take it off all the gunk should come with it.
im cleaning it several times a day but ive also been told not to clean it too much or ill irritate the skin. also in hospital they were leaving tubing attached 24 hours but at home - evem at night - i like to remove it after each feed, wash it and store in freezer. is this what you all do? also, did you find that it started rotating a few days after surgery? i thought i should wait for it to set before turning it...?
We never left Henry's tube attached. We would clean it and just store it in the cabinet... why would you put it in the freezer? I've never heard of that.
That's right... cleaning it too much can irritate the skin. We were encouraged to rotate it as soon as we left the hospital. We were told not to be "too gentle" w/ it. The more you rotate it, the better. It is natural for the body to try to "heal" and "close up" the hole. This results in the body trying to form new tissue... granulation tissue. The more you rotate the button, the less likely you will have problems w/ granulation tissue. My son had a heck of a time w/ granulation tissue. Granulation tissue bleeds, is painful, and causes the button to shift which can cause a lot of leakage. It took months to get rid of, even when we treated w/ the silver nitrate sticks prescribed. The only thing that finally worked was using the calmoseptine and iv sponges. Feistylioness78 is right... by wetting regular gauze, you can help prevent it from sticking. But we found it much easier to use the iv sponges. You can google iv sponges and find a good price (I think I found them for $10 for a box of 70 2-packs).
My Daughter is now 8 months and her gtube was put in when she was 3 months old. She has trouble with her suck, swallow breath coordination. She has always had a strong suck though, I always insisted on a pacifier when she was being tube fed, I believe that helps her mind relate the suck with the full feeling of the tube feeding. At first she wouldn't take anything by mouth. I bought the infant toothpaste and put a dab on the pacifier, she loved it. I found a feeder for her and thicken her formula with some oatmeal cereal with a touch of applesauce for flavoring. I chose oatmeal because it is less constipating and since digestion starts in the mouth, when the child is tube fed, sometimes the body doesn't know what to do and constipation occurs. Each time she takes something orally, she has a bowel movement. She has been on the vent 5 times in her life, the only thing she could have was the toothpaste, flouride free and safe to swallow. She is a little spoiled for it but I do believe it is what help her maintain her desire to suck and eat orally. Now she still gets tube feedings, but we first feed up top and then whatever she can't take in we pump it in.
A couple of things that I have found out by trial and error. If you are not using a pump to bolus feed, be careful with the rate of food going in. This caused Cheyenne to have gas if the food went in too fast. Also if she is constipated, she has reflux out the mouth if the food goes in too fast even though she had a nissen.
When Cheyenne is constipated the button site looks more red or mean, because I think her skin tightens around the mickey. Just a little sign for me to give her some Milk of Mag or Caro.
You are right, over cleaning will cause the skin to break down. Just keep that area dry and it should be fine. The reddish discharge is normal and should go away but when the site is irritated, it may ooze a little.
In the hospital they leave the tub attach so they don't have to do the extra work. I find that leaving the tube attached causes weight on the site and makes it more irritable. I remove after each feeding, at night she is on continous and I let it run and then in the morning dry the area and clean the tube by running regular dawn through it and rinsing well. As far as turning the button, it turns on it's on when I shimmy around it, I do turn it to facilitate the connecting and disconnecting of the tube or to help with tube placement during awake hours.
I don't store my tubes in the freezer, I have a special hook system over my sink and I wash it and let it air dry.
We found the best little pad for the tube last hospital visit and it is great because the part that hits the skin is always dry. It is Biopatch 3150, it is a precut pad for mickey's and it works great. An Antimicrobial Dressing that helps when the site is in need of a little TLC.
Hope this helps!!
My daughter got the g-button when she was 3 mo. old. She is 9 mo. now and we were given our 1st ok to feed her orally just a couple wks ago. It's being pretty rough because her taste buds have been dormant for so long, so my advise is to let her taste things as much as you can so that when you go back to oral feedings that's not a big issue. Hang in there-the g-button feeds are not as complicated as you might think once you get used to doing it. We do the continuous feeds on a pump at night and the bowless during the day. You baby looks very sweet!
they told us we could store it in the fridge to avoid any bacteria growth.. we use a kangaroo joey pump and the bags that come with that last 3 days (if extra precautions are made to clean it thoroughly) and we store them in the freezer in between feeds. the bags cost $9 each! we have a great assistance device program with the govt of ontario and they pay for 75% of sofia's medical devices. thank god!! i just tried bottling her and she was so uncoordinated.. which is frustrating for her because i think she actually wants to drink it! i have no idea what to do. i feel like the feeding and swallowing team at the hospital gave up on her as after we had the swallow study we havent been seen since and the ot who comes to the house just tells me to put my finger in her mouth and keep it positive. so, we're not actually improving her bottling by any means! at what point do you move to a sippy cup and how about solid foods (rice cereal). our dietician said 5 1/2 months corrected, which is two weeks away! i just want all the pain and memory of the ng tube gone before starting rice cereal. i need it to be eaten and enjoyed by my daughter!!!!!
YOU GUYS ROCK... i don't know what i'd do without this site!!!!!!!!!!!!! thank you :)
My son have had his gtube since he was 4 months and now is 5 months. After every feed I detach his tube because he grabs at it. But I cleaned his site after every feed and put the bactriban and a 2X2 gause and he eventually got an abcess and he was always in pain so they told me to apply the cream and clean it every 6-8 hrs and has been fine ever since and so has he. It's very easy after you get use to it.
And yes after a couple of days his rotated alot and still do now but when I tug on it , it doesnt lift up so it's ok. The moms on here have helped me out alot so I hope you find them helpful as much as I did.
Good Luck!!!
Let me tell you what I think about swallow studies, they don't tell you a thing! My daughter passed her last one and I was present. It included five sucks on a bottle and she was hungry, the swallow study doesn't take into account that a baby sucks well over five or ten times during a feeding nor does it allow room for babies to tire during the feeding which in most cases greatly affects their ability to suck swallow breath. I dare not trust the speech therapist that conducts the test who does not know my daugthers ability or disability to swallow correctly.
They sent us home with the Kangaroo as well, but I didn't like it. I changes to a Ross Flexiflo Enternal Feeding Pump because of the ease the bags offer. The bag has a hand pump which really helps if I am away from the mechanical pump, we also found a portable bag that holds the motor so there is not ever a need for a makeshift robot to hold the bag. The portable bag was $80 and is washable. The pump is always optional to change so find one you are comfortable with. We are fortunate that our Health Insurance provided us with a coordinator and she applied for a waiver that deemed our formula and feeding bags a "necessity to life" so the insurance covers all cost at this point. You could check into that. Believe me they won't tell you anything unless you ask, it can be frustrating.
The move to a sippy cup for us will be delayed, she is just starting to take thickened formula in her bottle. I see no reason to push her. A good speech therapist can show you several tricks to stimulate her to eat. Your finger in her mouth is great, especiallly if you use an infant finger brush and roll up on her pallet, five times to the right and then five to the left. There is a great little thing called "Z Vibe" it is an oral motor stimulator and it cost about 15 dollars, it has a spoon attachment and some little brushes. You can run that down the cheeks about five times each and just under the nose over the top lip a few times, if you do this before feeding it does seem to stimulate the mouth and prepare it for eating or sucking. The infant finger brush can also be used in cirucular motions on the tongue, just add a little of that infant toothpaste and your baby should love it. When you hold her bottle, try chin support or also try using the back of the bottle where you hold it and apply gentle pressure to the back of the tongue to help the baby form a suck around it. These are just some things I have had success with. One day at a time, sometimes one moment at a time but you will get there.
I just wanted to add, that it is great your baby wants to eat, that is a great thing that no adversion has developed. The feeding can be frustrating and a slow process but if the baby takes one or two sucks on the first try and then three or four on the second, be thankful and optimistic, although it is slow and time consuming it will work out. Spoon feeding my daughter is so hard, she has tongue thrust issues, but I just scoop and recycle, we both laugh and play and she is getting better but it is a slow demanding process.. I just pray for patience and discernment to know when to push her and when not to. Good Luck!
I agree w/ SarahHartman, swallow studies are useless. Ditto everything she said about them!
I would recommend finding a good OT/ST for feeding therapy. We tried going through our EI program w/out much luck (probably didn't help that our coordinator is not great). We saw 2 or 3 therapist before we had a friend suggest one to us. That therapist was actually involved in EI, so it worked out well. However, we reached a point w/ her where we were no longer making progress, and now we have moved on to another therapist. I have found that good feeding therapists are hard to come by. I would suggest asking around in your area (ask your ped and/or any local preemie moms).
you know, the medical experts tell you something and you hang on their every word.. so, they say your baby needs to drink barium and you agree.. and then you get the result: she has premature spillage, but does well overall with swallowing.. well, we already know that!! so, when theyve now said to me that she'll need another one before moving onto solid foods ive got to disagree!! i mean, they dont see her in months but then can make that recommendation?? based on what??!!
weve got an ot but ive started thinking about all these women coming into my house who are exposed to loads of kids (the ot has two kids of her own).. and during h1n1 and not having anyone else into the house but then letting all these people in scares me! ive been trying to find stuff online but to no avail! dont other people struggle with feeding issues!
the dietician said we could start solids at 5.5 months (8.5 actual). what are the pros and cons of starting late/early?? sofia has started waking in the night a lot, which she never used to do! coming from the nicu setting did at least give me a baby that slept for 10-12 hours straight! but now she's waking... maybe just effects of last Tuesday's surgery, or that she's hungry??
I understand your worry w/ people coming into the house w/ all the illnesses. But trust me... you do not want to be dealing w/ feeding issues when your child is over a year old. It is much easier to correct feeding behavior prior to 1yr than afterwards. Anyone that comes into your house should be performing good hand washing, etc. You can even have them wear a mask as an added precaution. I personally, would take the risk than not get therapies that my son needs. Its also better for people to come to your house than it would be for you to go to them.
I allow 3 therapist into my home, my daughter not only has feeding issues but also congenital heart disease with a compromised immune system. I insist they was their hands, follow with germex and I don't allow the toys in, we use our own. The therapy she gets is invaulabe, and vital to her growth but I also keep in mind that I know her best. As far as your child eating at this point, start slowly.. let her tell you when she is wanting more. If you feed her and she has no negative reactions (choking or intestional issues) then give her some more. Our Doctor's never told us what to feed or how much so I requested a pediatric dietician and they guide me with how many calories she should get. They base on her body weight and what she needs to grow. She may be waking at night due to hunger, most babies eat at night until they are about one year old or older. My daughter is on a slow continous feed at night, gives her an ounce an hour for 9 hours. Since you have the tube, this a great way to increase her intake but if you are attempting to make the move to solid, more food at night will decrease her hunger during the day. Talk to your Doctor, be frank with them and bold. You are your child's advocate, to the doctor they are just another patient in another room.
she had a little bit of rice cereal this morning!!!!! like maybe a finger! i played around and put it on my finger as suggested. i found that the only way she swallowed was because she sucked on my pinky. but the main thing is that she was happy.. seemed more reflective than anything.. very serious. we need her to eat... she needs to enjoy eating as she's part of an italian family!! :P ill stick with the rice cereal every morning for a week... right?
on a side note, did any of your babies have a low grade fever like 4 days after surgery? sofia had gtube on tuesday, discharged on thursday and fever sunday-wednesday. i think it's a bit better today. her base temp was around 36.2 and it was up to 38.3, but would come down with tempera. she's now at 36.7.. im wondering if as she gets older her base temp will get a bit higher. on a side note i took my temp after hers (with a diff thermometre) and got 35.9!!!
@mamseeta: I'm glad the operation went so well for your daughter! I know you were quite scared.
It's comforting to see there are so many babies out there with g-tubes. My son got one 3 weeks ago and they told me they do this once a year and I felt bad.
I have a question, maybe someone can give me some advise: my son is still on the CPAP, therefore he is not allowed to bottlefeed. He was on nasal cannula before and he was able to bottle feed (e.g. coordinate swallowing and breathing). As he will need quite some time more on the CPAP, they put the g-tube. Now I worry because you all write the taste buds will not deveolop and the feeding behaviour should be establisted in the first year...
What can I do for my son? Should I put some flavours in this mouth? He can swallow his own saliva. What kind of things could I let him taste? What is safe?
Any advise is much appreciated! Thanks!
Things to taste... try infant toothpaste that is safe to swallow. Walmart carries it, I also dip the finger or pacifier into applesauce. Just a little makes them feel so good to have anything in the mouth!!
Good Luck!
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