Families managing Feeding issues ranging from Tube Feedings, Failure to Thrive, Oral Aversions & More.
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Click on the links below for Tube Feeding information Pictures and Videos Tube Pics Video of Jake changing his own tube Central Line, Port, and TPN Pictures Granulation Tissue Pictures Securing the Line Pictures Tube Feeding On-the-Go
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How do you give your tube fed kid prevacid? We picked up ours today (switched from Axid) and it's a capsule. The pharm said that I can open them and mix with some applesauce (well, yeah, IF I can get him to swallow it all right) or mix with a bit of juice but to make sure he gets it all. She said we should not just dump it in the gravity bag with the formula, he might not get it all.... so what do you do? The axid was a liquid and could go right in the tube by syringe. thanks,
A had her surgery for the mic-key button about a week ago now. She's always had trouble with gas and it's pretty much the same with the button. I keep hearing that I can vent the gas through her tube but even though I've done several google searches I still don't understand what to do. Can someone give me very basic "venting for dummies" instructions? Thanks in advance! :)
I want your thoughts, opinions, advice, etc... A little history: Emeric has never been a great eater. Last year GI assumed maybe he wasn't eating due to reflux so we put him on Prevacid and his eating improved.Not tremendously but definitely improvement. The problem was that the Prevacid caused chronic diarrhea so we took him off it. Since then his reflux seems to have improved. He's always been a silent refluxer and I could hear him refluxing whereas I do not anymore. He doesn't throw up...
Well I weighed Emily today, she gained 6 oz.!!!!!!!!!! I am so glad her weight is coming back up. I am still going to take her to a GI, but at least she is gaining!
I've been lurking here on the board for a while but this is my first post. My daughter A (age 32 months, has DS, FTT, oral aversion) just got her mic-key button put in yesterday. We're still in the hospital but will hopefully go home tomorrow. I have been wondering, though, what to call her feeding tube? Maybe that's a silly question but I just wondered if there is a child-friendly term we could use for it that would help her start to understand what it's used for or at least make it fun....
vienne's body temperature isn't rising. Sunday she had a fever of 104. yesterday she was reading at 94 degrees. Tonight she is at 95. I have had her bundled and on a heating pad. I live in oregon and a town house, so it is not very cold. I keep the house at 65 degrees. I am not sure what is going on with her. She has been sick, but she is so cranky and fussy. Monday we went to the dr. We both have bronchitis, so we are abx. I am worried about her temperature. The merk manule calls it mild...
With a recent site infection it got me thinking about school. Our ped seems to take a slower pace at treating infections (sometimes) we usually do a day or 2 (sometimes more) of a cream (I have 2 different ones that we use) and if that doesn't start working we switch to oral med's. This time I used the first cream for 2 almost 3 days before taking him in. She switched him to the second cream and sd if not better in 2-3 days start the oral med's. We started the oral med's Sunday. But it got...
I've been so busy with school I've been scarce around here but I wanted to let you guys know how great Blade's doing. He'll be 9 in May and keeps flirting around 50-52 pounds. He eats lunch at school with his friends (the foods safe for him at least - mainly the fruit/vegis), gets one bolus feed in the morning, two bolus feeds during school, one in the evening then 600 cc overnight. I tried cutting back on the feeds and he quickly dropped a pound. He eats tons but he's so incredibly ACTIVE...
Anyone know if Zevex changed their bag design? We got a new box of 500 mL bags and our pump keeps alarming "no flow out." We got a new pump thinking it was the pump and the new one does the same thing. My hubby (mechanic that he is) took a bag apart and cut off a small part of the plastic (it was a triangular tip that had two holes in the side) and we've had no issues whatsoever. Anyone have any insider information???
Of all nights for this to happen - he got to bed late and missed a feed this morning so I am way behind. We had noticed that the pump has been a "little off" the last few days. Well tonight it will not prime around the cartirdge that is inserted into the pump. It makes a horrid noise and nothing will go around the loop. UGGHH! He does not tolerate bolus feeds and I still have to get 600 ml of Elacare into him tonight, not to mention his h2o. Any ideas or suggestions??
We have a long g tube now and we have something that secures it to his belly about halfway on the tube that they gave us at the hospital. Before school I also used some tape and secured the end of the tube. When I got to school this morning the teacher said that the nurse wants me to wrap his belly around with an ace bandage for school to secure the tube. That sounds painful to me for a new g tube and I have called the GI office to see what they want me to do to secure it. Isaac came home...
Well took Emily to the pediatrician today and she is down almost 2 pounds :( She grew 2 in. since January, she is 43 inches tall and 32.4 lbs. The Dr. is getting her Benecalorie to see if it will help her gain weight. It is hard to feed her more than I do now, they refuse to put her on a pump so that I can get more calories into her at night. So everything she gets fed I have to bolus gravity feed. I love her ped. but that is one thing we disagree on, it would be so much easier if she was pump...
Alec went to neuro yesterday and was weighed..... he went from a VERY thin 58lbs when he arrived in September, to now.....a whopping....
I don't know how I didn't know about this but I saw one at work last night. I have to get one and try it. Any of you use it? Do you love it?
Hi I posted before about Ben's pegj and confused people with my wording. Sorry! We are having problems with Bens long gj tube not moving. It isn't being used as he is on tpn except to flush both lines which is working fine. We've now been told he probably has buried bumper? Not sure if that is a term most of you guys use but if not it is where the internal disc of the tube gets inbedded in the stomach lining. Has anyone had this, what symptoms did you get and what was done about...
I'm just curious. I know everyone's anatomy is different, but one of the big surprises to me after Julie came out of surgery was to discover that her stoma is straight above her belly button (several inches) It's really pretty high- a few inches lower than her bra line. All the pictures I had seen prior to surgery the kids had it offset a bit to the side. I think it's a good thing- once she has her button I think it will hide pretty well under her bustline. (Mom and I were joking...
So, my son got his GJ tube place last Wednesday at IR.. We started using the GJ tube on the same day to feed his Elecare.. he was doing fine until today... Today, he vomited 2-3 oz of formula!! I am afraid that his tube is out of place and migrated into his stomach?? or could it be just simply the formula backing up from jejunum to stomach? I read on this board that I can test by putting some water colored w/ food coloring into J-port and draw right back from G-port, if the content from...
Vienne has been really fussy with her bolus feeds. I am not sure why. She is sick, but when I go to plug her in she squawks. She cries while she `gets food. I took her to the doctor and she has 2 ear infections and bronchitis. so perhaps it has something to do with it. she also had a 104 fever last night, I dont know why. her tummy seems really tender when the doc palipated it. but no answer as to why. She has not had any changes except her recent stint in hospital. Just glad she doesn't have...
Asher will be getting a Mic-key button on the 26th of this month. I am wondering what all I should or need to get before he has it done...Does anyone have any suggestions or are there certain things I definately need? Thanks
How old was your lo when they started to want to hide their button instead of being proud/not embarassed? (if they did at all) Jacob used to be proud and not embarassed. We would go to the YMCA or whatnot and and kids would ask him 'what's that' and he would proudly tell them all about it. For the first time, yesterday, he was 'snappy' when some kids saw his button. My friend was doing childcare at Church while I was attending a Bible Study. His button was hurting him and he was...
not sure where to post this...tube feeding, motility, mito?! Anyways we saw GI again yesterday for weight follow up...Luke has, once again, lost weight. I really don't understand how he keeps losing and having miniscule gains (so overall he's really plateaued) when we went up 9cc's an hour. We did that for about 3 weeks and he was having a Horrible time tolerating, so we went down to 42cc an hour at night and 47hr during the day. Tolerated ok for a couple of weeks and then last week was...
Ok so I know it's not the clearest pic - but can you see the little dots inside the tube? They are throughout the tube and DO. NOT. BUDGE. For love nor money! And i promise - it is MUCH worse looking than in the pic! I am not complaining about just one or two little dots! It's a gross mess, but it is yellowy (bile colored) and up and down the tube. I realize they are probably just harmless little flecks of - i don't know - some gross part of her formula or a mixture of formula/bile/meds all...
we finally got d's feeding supplies medically approved. SO mediciad is payiing for everything that d got prior to this "problme" and some things that she needed that we had to pay for out of pocket incluiding syringes and drainage bags. I did have to switch companies and really miss them already as this new company is not as friendly and question everything that d needs ( to both me and her drs) they tried to tell me that when you turn 3 you must swithc to a soy based formula. but d is allergic...
Ok I need some help, Katlyn has been struggling with her tummy with her fatigue, but tonight when she said her tummy hurt and I vented her what I got out was green formula, and she hasn't eaten anything today but a few animal crackers. Usually venting her makes her feel better, but I normally leave her stopped for a bit to help, but tonight it seems to still REALLY hurt. I'm stumped as to what might be causing the green in her tummy, but I know when I took her into the pediatric urgent care...
So last night arount 1:40 am, I refilled his feeding bag with Elecare (I refill the bag every 4 hours since Elecare is 4hrs stable in room temp). I only put so much so it will be done at 4:00 am and he can have 4hr break until 8:00 am. The feeding pump (Zevex Infinity), usually beeps when the bag is empty or it senses air in the tubing.. but this morning when I woke up at 6:30 am, the feeding pump was still going with no formula in the bag & tubing!!! which means that my son got fed AIR for...
I just wanted to thank you. Jesse has the long GJ tube and feeding the G tube has been a nightmare. Using just a cath tip syringe that close to his belly equals mess because gas bubbles over the top. I have been using a entralite bag hanging for gravity feeds but pushing his meds in with a syringe. When you posted about an adapter in one of your answers the othe day I checked Complex Child. Found out what I needed with your pictures in the article. Talked with the supply company yesterday...
My son had G-tube for almost 6 month for his FTT and last January, we found out that he had a brain tumor...so he had partial resection done and VP shunt placeed, and started chemotherapy since the tumor already spread to his spinal cord. Since he had the surgeries and started on chemotherapy, his vomiting got really out of control so we finally decided to change his G-tube to GJ tube. Today, we went to interventional radiology and had a Mic-Key GJ tube put in. His GI said to start with 20hr...
Kaia had her Gastri Emptyng scan on Friday. It was a 2 hour test. She did not eat for 8 hours prior to the test and all she at for the test was 1/2 graham cracker with about 1/8 tsp of pb the radioactive egg and 2 sips of apple juice. The nurse called and told us that the radiologist who read the test wrote " Delayed/slow gastric emptying first 90 minutes of the test but possibly due to technique used and slightly delayed emptying at the conclusion of the test. She said that the doctor...
In seems to me that we have had several kids get new tubes recently. It would be nice to hear from both the new tubey families and the experienced (notice I didn't say "old") on how your kids are doing. How is your child doing with tube feeds and in general? Any thing concerning right now?
Brandon is sporting a brand spanking new Mickey tonite... It's only temporary until our Nutriport gets in, but his granulation tissue looks the best it has in months, and the moisture under teh PEG bolster was threatening to make it flare back up again, so I figured we better change it out while we have the chance... (the goal was to get the gran tissue down, then put a mickey in so it could get air at the site regularily... so this is the final step in our long drawn out process....) ...
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