The balloon is inflated inside his tummy and the button is on the outside so that I can feed him. When his tube got pulled out, the balloon was inflated and so I'm sure it caused a little trauma to his tummy. We have an appointment with the surgeon next week, but has anyone else had any experience with this?? I feel terrible for him and hate that I have to keep giving him Tylenol for the pain. Any advice would help!!On another note..
Owen has not puked since last Wednesday. While this should be great news, he has traded puking for irritability. The constant puking (and when I say puking, I mean the entire contents of his stomach) made him feel better and he would go on to play and eat orally. Now that he isn't puking, he feels icky and doesn't want to play or eat.
It's a mystery to me.
We have an appointment with GI on Monday and I am going to request a Gastric Emptying Study. From what I read, it sounds like they would give him a bolus of food and continually xray him for an hour so that they can watch how the food moves through his stomach.
I know most of the reason for the puking and irritability is his heart failure, combined with the 8 medication he takes 3 times a day. On top of it all, I am giving him 1300 calories a day and he only gets 4 hours a day without being pumped full of food. Just one of these factors would make me feel pretty crummy and he has to deal with all of it on a daily basis.
He's such a little trooper!!
15 comments:
Hey sweetie!!! Hope you know y'all are always in my prayers!
Ouch! I have a PEG with a plastic disc retainer instead of a balloon, but my catheter has a balloon... the first thing to try is letting a tiny bit of water out of the balloon, sometimes it's just putting a bit too much pressure on the wrong place.
Next and quite urgent thing to check is whether the button is the right size and length, cos it's miserable if you accidentally get a short one, it pulls really painfully when you move.
Wishing Owen feeling better very very soon.
Becca (random friendly lurker)
ahhh, such a balance, meds, calories, happy tummy. Hope you get it resolved. Wish I had some advice, but I am clueless when it comes to the g-tube (thank heaven for that). Hang in there, you have a lot of prayers on your side!
Kaidence has the Mic-Key button as well. As horrible as it is to admit, YES her button has been pulled out with the balloon still inflated as well. It got caught on my snow boot. I felt awful. I dont remeber if that caued her pain after happening, but she has experianced pain off and on. Most of the time, I cannot figure out why. One time it was a little low on fluid in the balloon. Once I filled it back up it seemed to sit better. Have you noticed that sometimes it sits so that you can see a little bump under the skin? Maybe it is just a Kaidence thing. Anyhow, the mystery pain with K has disappeared for awhile. Sometimes she still cries and begs "no" when I hook up her feeds at night.
The G-tube is a love hate relationship. But most of the time I love it.
As for the puking, is he on asprin or singulair? I am not sure what med was causing the puking with K, but it was one of the two I have no doubt. I know that it is not a 'side effect' of the drugs, but it was for K. She would puke all of the time. Multiple times a night, EVERY night. Mostly when she would get night feeds. I gave both meds at night as well. I stopped both meds the begining of last summer and the puking stopped within a day. No problems since. Good luck, I hope that he feels better soon!
Oh bless his little soul (and yours!). I'm praying for you guys.
Cxx
Try this website.....http://community.babycenter.com/groups/a3235/babies_and_children_with_a_feeding_tube?pg=2
it is other G-tube moms posting Q and A. I hope it works. Please let me know.
Shay
If a child is irritable and in pain it is time to go to the ER. Something is wrong and Tylenol may make it worse,( ie bleeding etc.)
Don't fool around with these heart babes, get him some help.
I came across your blog and now following......You and your family are in my prayers. I'm sorry he is feeling so bad!!
Sincerely,
Maria
We have the Bard and have had no issues whatsoever. The Princess has had it since August 2008. I am unsure why other Docs don't regularly offer it but it is worth looking into. I hear of Mic-Keys being pulled out all the time.
Hope you find the answers you need.
He's AMAZING...and always in our prayers!
I can't believe he's almost 2!!!!! :)
Love to you~ Rebecca
I've been following your blog for a long time. My son is a 16 month old heart baby with multiple left-sided anomalies (not HLHS, but close), and has had 2 OHSs as well as a Mic-Key button surgery. That's why I love your blog--I can relate so well to what you are going through. We also have massive cases of pukies at our house. Before his second OHS it was 4 or 5 times a day. Since the second surgery, it's been down to once or twice a day, which is better, but still I feel horrible for him.
I've pulled my son's button out accidentally, too. He doesn't seem to be in much pain afterwards, though. Could Owen maybe have some granulation tissue growing inside his stoma that is hard to see? That could be causing pain if you didn't know it was there. I hope you get it figured out soon so he feels better!
Chrissy
I've been following your blog for a little while and hope that your little guy is feeling better soon. If he has a lot of pain and not acting normally I would probably take him to the ER or see if the surgeon could see him sooner. They really need to evaluate it and be sure none of the stuff that is supposed to be going into his stomach is leaking out into his abdominal cavity. Is the pain just at the site, or all over his belly? Fevers? Normal poop patterns?
Hope he's feeling much better soon.
Andrea,
We had the same G-tube with Mercydez and hers came out a couple of times. Unfortunately, I think that's normal.
The puking and irritability though... I dunno. Whenever Mercy's g-tube came out we would scrub it clean with soap and hot water. Perhaps it needs a good cleaning? I'm sure you've already tried it, but thought I would mention it anyway.
Another thing is that sometime the tubing can rub against their poor little tummies. We would always first clean the site with a peroxide/sterile water solution, then we'd put a cream (like an anti-rash bum cream) around her tube. Then we'd cover it with a gauze pad. It always kept it nice and clean. We would clean it at least once a day, more if needed. Maybe it's worth a try...?
I'm sorry it's been so up and down. I hope a solution is found, and quickly.
Good luck! I'm thinking of you and your sweet family.
Your friend,
Ashley
PS I'm sorry for your loss. Isn't it wonderful to have such amazing people as part of our lives. What wonderful memories these loved ones allow us to have.
What a cute little guy! My name is melanie I have a 14th month old named Witt. He has trisomy 1 and is too in heart failure. We are about to begin the process of a heart transplant. Witt is all gtube fed and we also just started him on peptamen jr. That has helped his tummy a lot. Witt use to also use to throw up a the time and we finally had to have a fundo done so he cant vomit anymore. From what i understand sometimes if a child has really bad reflux that can be very painful too. Witts reflux got worse after his gtube surgery and he started seeming like he was in pain but we could never figure out why. It made a huge difference having the fundo done and he was also put on meds to help is stomach empty faster. if you have any questions I would love to try and help. melski712@gmail.com
wittharrislupher.blogspot.com
The g-tube pain is likely just because the access is so new. Honestly Ky was not "comfortable" in her tube for almost a year. Also, we found that sometimes after she leaked around the g-tube site, especially if she had had solids, that she would get gritty stuff between the skin and tube. We would take it out, rinse it off, and put it back in (and yes that required an act of congress and John Cena) and she seemed better.
That said, now that she is active and chasing her brothers that mickey is yanked out almost monthly. She still has days when she pulls on the tube and you can tell its uncomfortable but we have also come to know that her body eats the tubes more quickly than normal and they start to leak after about a month. (I think you are only supposed to change it every 3 months but we have NEVER made it 3 months between a tube change... never.)
We have also learned that Kyleigh most comfortable with the balloon overfilled by about 1 ml. We fill it to 5 ml when we initially put it in and then about a week after that, when we start to notice that the tube is easy to TURN, we add another 1ml to anchor it more firmly. Ky has trouble being irritable with it when it is not anchored well enough.
Also, I had not ONE problem in the world, using a little Neosporin with PAIN RELIEF around the tube site. Our surgeon said that it was no biggie and that seemed to help the pain a bit in the beginning.
Now, as far as puking... we have finally (after two years) figured out that Kyleigh cannot handle a bolus in ANY way shape or form. If you put the kid on more than 50/hr EVER.. she will puke. If EVER her stomach contains more than 200cc she WILL puke. That is just her system limits and it took us a while to figure that out. Also... have you ever discussed doing a GJ tube with your doc? Once you have the port opening for a G-tube its a simple insertion (non invasive) to put the tube past the stomach and into jejunum. I know TONS of kids who are on a GJ tube because their systems did not tolerate a straight Gtube. It might be something to do some research on and talk with your doc about... just thinking out loud... :)
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