Doctor Janice Wong {the Registrar} checked Jonathan's button first and said there was no need to change the size. Moreover, she said that it was probably time to change cos the silicon button would have started breaking after being used for more than a year.
She was pretty gentle except that the button was quite difficult to pull out after being in there for more than a year.
She inserted the small rod into the button hole where I fit the feeding tube in. She tried pulling out the first time but it didn't work. You know...when you try to pry something out, it doesn't come out, then the stomach flesh just kind of stretch with it? That's what happened.
I helped her press the flesh down and she twisted and turn and within a minute, the whole button was out {the mushroom part all covered in dark gooey stuff}. She covered the stomach hole with gauze cos blood was oozing out. She said it's ok cos the granulation tissue will bleed a little. Then she took the new button, put lots of gel on it and with the same rod again, straightened the button and inserted into Jonathan's stomach within a few seconds.
Jon was very good. He didn't struggle much. I let him listen to his wheel tape and a nurse held his legs. He said it was painful but half hour later he said he was ok.
He was so hungry! I got up at 6am to feed him. They allowed me to give him water around 11am before we changed the button. After everything over it was already 11.30am and we could give him some milk.
There's still a little bleeding. It's the stomach tissue but it's subsiding.
We are so proud of him.
Well...I've always wanted to show what the BARD button is really like. Too bad I don't have a clean one but this would do... :). A brand new one is clear silicon. Don't be affected by the sight...haha. I cleaned it up before taking pictures.
This is the actual button {above}.Size: 1.7cm {measured at the Shaft}. The mushroom looking part stays in the stomach. The bottom {that looks like the inverted "T"} sits nicely on the tummy. Because Jonathan didn't really grow too fat, we didn't have to change to a longer button.
See the hole {above}? That's where whatever I feed Jonathan comes out from. There are actually two holes. one on the left and right.
The little flap {above} is actually called the Anti-Reflux Valve. It's attached on one end and whenever liquid is fed, it will open. Once done, it will close. I purposely cut the mushroom so you can see clearly what it's like. If this valve is faulty, then liquid will flow out easily even though the cap is secured. That means, it's time for change.
This is how the button looks like when inserted into the stomach {above}.
Jonathan's tummy and the brand new button. He's still a little sore and there's still a little bleeding. I apply Vaseline Petroleum Jelly to soothe the skin around the stoma cos sometimes I use surgical tape whenever I shower him {although doctor told me it's not necessary}.
7 comments:
Hi Serene,
I googled granulation cos I was looking for pictures and your blog showed up. I'm mom to Vera whose just turned one and just had a bard button too! I'm excited to find your blog. we can share our journeys. Vera has severe developmental delay...you can read more here
http://mylittlevera.blogspot.com
Hello there...
I was reading about Jonathon getting his BARD changed. My son got his G-tube in when he was 3 monthes old and they then changed it to a MIC-KEY button. 1 1/2 yrs. ago they put in the BARD button and now its time to get it out cuz he is eating good on his own now. When he got it changed before they just yanked it out and I have been told recently that they shouldn't just yank them out w/out putting that orbitrator tool in 1st. And they should also put a numbing cream on the site too 20 min. prior to pulling it. You had said abt. they put the rod in Jonathon's button before pulling it, did you ever have an incident where they DIDN't put it in? I always feel like I have to do my own research on everything and I find it hard to trust docs. If anyone can give me info on what they know abt. removal of BARD buttons. In a way I wish we would've just kept the MIC-KEY in since that had the ballon to deflate before removal. My son is 3 1/2 yrs. old now, his diagnosis is unknown but he is delayed physically. Please someone help me w/ some info!!!
Hi Anonymous. The doctor did use the orbitrator tool. But I don't remember them applying numbing cream. I will remember next time we need a change. So far, Jonathan has had only 2 changes so both times the orbitrator tool was used. It's good your son is eating by mouth. Hope everything is well.
hi Serene, i have read your post..my child is has difficulty in swallowing too. presently she has a PEG tube, and now her doctor advice to change the peg with bard button. i was confused because she told me to buy french 18 1.7cm size which the other doctor whom i pleased to buy that item in america coz wer here in philippines. she told me to ask the doctor if it is really the size coz it is too big for hannah my daughter for her age,she is 2yrs old now.what about your son, did he had the same size french 18 1.7cm when he was 2yr old only? i hope u can answer my question asap..
Hi Hazel, sorry for the late reply. My son only had the button fitted when he was around 7 or 8 years old and still they gave him a French 18 because he was a small size boy. So I guess maybe a smaller one will be more suitable for Hannah because if it's big, it will definitely leak. I've got a friend who had her son fitted with bard button around Hannah's age. If you can give me your email address, I will double check with her and reply you asap.
Hi my son currently has a Mic key button in and is about to have it changed to a bard, but what i want to know is, is it better? As for putting it in and taking it out my son is going to hospital to have it put in as they only put it in while they are under.
To me, the bard button is good for Jonathan because it lasts longer in my case. I don't change so often. Mostly once a year or sometimes the Bard stays good for more than a year. Also, it's flat on the tummy and it helps cos Jonathan rolls around very much. The only thing is when they change the Bard button, sometimes it's a little hard to remove from the tummy and there is probably some pain when they are changing it. My friend whose daughter uses the mikey says it's easy to change. Why did you want to change to Bard? Email me if you want. btte05222@gmail.com Hope everything turns out good for your son!
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