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Special Needs
DixieNormous330
member
Tubie Mommas
DixieNormous330
member
DD just got her g-tube on Thursday. We started over night feeds on Saturday when we got our equipment.
When do dressing changes because less traumatic for us and DD?
Also this morning when I woke her, there was some brownish speckling in one spot on her mattress, like she'd spit up. Concerning?
And there was a tiny spot on her onsie above her insertion site that looked like the wound oozed a little. When I looked at her dressing this morning there was a tiny smear but nothing crazy and the pads weren't soaked like she was leaking all night from the site. Is this normal during healing?
The NP doesn't get in until a little later so I'm going to call her but I wanted to see what some of your early experiences were.
Thanks
This discussion has been closed.
Re: Tubie Mommas
https://community.babycenter.com/groups/a6720515/special_needs_and_medically_complex_kiddos
https://community.babycenter.com/groups/a3235/babies_and_children_with_a_feeding_tube
I have asked a g tube question on here before and got very few replies. You should try posting on there too. Usually they ask for pictures, so if you include that you should get more responses.
Good luck! My little guy is getting his on the 27th.
We didn't have dressing and were told not to put gauze or anything in the skin. Keep the area clean and use desitin and unflavored maalox made into a paste if the site gets irritated.
For more answers, you can also try feedingtubeawareness dot org. They have tremendous resources and an active Facebook page.
I can tell as we approach almost 2 years with the tube, it gets WAY easier!
What kind of tube does she have? Did they with a PEG or did they go straight to a button? If it's a PEG I can't help much since DS had a mic-key inserted from the get go and now has an AMT mini.
As for the dressing changes- DS was barely 2 when he got his tube and I think he was just sensitive and scared vs. there being a bunch of actual pain at the site. He was really scared to have anyone even near his belly for maybe a month- we just took things slow and tried to remind him "no owwies mommy is just looking" and made sure to be as gentle as possible when changing the dressing. By the end of the 3rd week or so things were calm and in a pretty easy routine.
What kind of dressing are you using? It is pretty common to have weepiness and some mild leaking from the site- if there is lots of stomach acid leaking then that needs to be addressed to make sure the button is the correct size but some crustiness and scabbiness is normal (DS still has this regularly and hes been a tubie for almost a year). Also remember that the body naturally wants to close the hole and the result is often development of granulation tissue. Granulation tissue (GT) is a lot scarier looking than it really is- DS always has GT around his stoma and its most always red and slightly wet/shiny looking. We have tried every trick in the book and nothing makes it go away and I was really worried but his GI and surgeon both said the amount of GT he had was no big deal. We've had the best luck keeping his site nice by using split gauze 2x2's. We will change them twice a day (a fresh gauze in the morning and a fresh gauze at night before bed). About 5 days a month I will use kenalog cream/triamcinalone cream on the site but it shouldn't be used for extended use (and they might not want you to use it while the site is still healing). I just put the split gauze on and tape it shut by putting a small piece of tape on the gauze itself (so no tape is touching the skin). As long as we keep the gauze on it, the site stays looking pretty good.
As for the spitting up- what is her overnight feed rate at? Has she vomitted much and has vomiting been an issue in the past? Without knowing her dx that caused a tube I can't comment too much but I will say that DS is also on a continuous overnight feed and you will DEFINITELY know if your child is puking from too high a rate/too large a volume. The few times its been too much for DS it was tons of vomiting. The small spot could have just been a bit of reflux or something. Also are you venting or using farrell bags to help? We used those in the beginning as we were adjusting DS' rate- those can help as their tummies adjust to the feed. Hope this helps- let me know if you have any other questions! The beginning can be confusing and scary but I promise it has a quick learning curve and you will feel like an old pro in no time!
Thanks for the replies.
We're starting with a PEG for the first 3ish months then moving over to a mic-key. I spoke to the NP yesterday and she reassured me about the normalcy of what's going on.
DD has never been much of a barfer or spit-up-er. Which is why I was concerned. The NP said that during the adjustment period it's normal to have a little.
The starting rate right now is 25/ml per hour for 8 hours right now. We'll very slowly inch it up. We see the GI next Wednesday for our post-surgical visit.
Aside from dressing changes (I think the main issue is the tape) we're adjusting well. We're only doing overnight feeds.