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Ben's PEGJ all done

HelenB8
  • By HelenB8
  • Posted June 27, 2009 at 9:53 am · 9 replies
  • Shared with the public
0 Recommendations

Ben's pegj is in. It was a bit of a performance intially as there was a debate about giving him IV steroids as he'd been on such a long course. Following argument as to who would give it he had 50mg prior to the insertion.

The tube is thicker and longer than I was expecting and heavier. He is not too happy at the moment! He got quite dehydrated from fasting, a temp and it being hot on the ward so when we got home last night we just put water in the j.

This morning he's had 20 mls for 4 hours and we've given him a break for a sleep. He is in a lot of pain so having paracetamol and codeine.

He takes a while to get over things so am not suprised he has refused to stand up so far.

Thanks for your support and advice.

Love Helen

Explore topics in this journal entry and replies:

Pain

9 replies

alphabubo

Dear Helen,
I am glad to hear that Ben is now at home! I hope that his pain may soon decrease and that he will soon be able to tolerate more feedings so that he can become stronger and more nutritionally complete. I am continuing to keep you both in my thoughts and prayers. May you both be able to enjoy the weekend together with many smiles shared between you. Many hugs.

Warm regards,
Bobbiejo

Novagrad

Hi Helen!

Thanks for updating us on Ben - I was wondering how he was doing. He'll get used to the new tube before you know it! I agree - it's bigger than I expected too. But I'm not getting the infections with it that I had with the Mic-key j-tube. I agree with my GI that the stomach is a better muscle in which to insert the tube! It sounds like Ben is tolerating the feedings - I hope you are able to increase them to his goal. Remember, kids are strong and they bounce back quickly so all of a sudden, I bet Ben will just feel better. Take care and you remain in my thoughts and prayers!

Hugs,
Mimi

HelenB8

Hi Bobbiejo and Mimi

Thanks for your kind thoughts and prayers.

Things aren't going too well at the moment. Ben is in alot of pain and max dose of paracetamol and codeine wear off quickly. He hasn't opened his bowels yet so we are not increasing his rate above 40 mls.

The stoma is a lot more mucky than when it was first done in feb and he is not wanting us anywhere near it. I am flushing both tubes but the G is looking quite cloudy.

Am hoping our community nurse will come out tomorrow.

Hope things are going as well as they can for you. Take care.

Love Helen

alphabubo

Dear Helen,
I am sorry that Ben is not doing well. I hope a way can be figured out so that he might have less discomfort. I will be sure to keep you both in my thoughts and prayers.

Warm regards,
Bobbiejo

Novagrad

Helen:

I hope your home health nurse can figure things out so that Ben feels better quickly. I think his pain will decrease over time and he will feel a little better each day!

Mimi

HelenB8

Hi there

Thanks for your support. I took Ben to the gp as the nurse couldn't visit. They have given him some antibiotics and some dressing to soak up the gunk round the stoma. I think they really shoved hard to get it in.

He is a little brighter today but still not opened his bowels so giving him a lot of laxative. Still running at 40 mls an hour.

I've found that the 50ml syringe won't connect to the G port goes of the J port so I can't vent the way I usually do. Do you think drainage bags work for that as well as the syringe does? Thanks.

Hope you are doing ok.

Love Helen

Novagrad

I don't think the drainage bag works as well as the syringe. I'll use the bag all night and then when I wake up I'll have 5 or 6 syringes full of bile. I'm going to see my GI next week and mention possibly using suction at night. Nights and mornings are the worst for me. I hope that the antibiotics help Ben and I hope he starts to feel better soon!

Mimi

GtubeMan

Hello Ben and Family,
I read all of the recent post on Ben’s G tube.
I had one installed in December of 2003. Over time, it became my friend!
This is what I have found over the last 5 year and just maybe something here will help.
If you force the liquid, this may cause fluid to leak out of the tissue surrounding the G tube/infection my result. What do I mean by force? At first, allow at least two or three minutes for 60 cc and then wait a minute or two. There is no rush! In the beginning, Longer the better.
At first, I would suggest diluting the liquid so it flows gradually. I am on Jevity. You should not go through more than one can (8oz) in fifteen minutes. This way the stomach can digest a small amount at a time.
At first, everyone is afraid of the tube going into the stomach. Believe me there is nothing to be afraid of!
This is important but you may want to get approval from the Doctor.
During the first two years, I had a lot of infections around the tube. It may start out by fluid leaking, or redness and defiantly soreness.
It is my opinion, that the gauze 2x2 , 4x4 between the round device (it slides on the tube to create a tight fit to the tissue)and the skin is the source of the problem! I used ointments, antibiotics and you name it and I still got infections.
One day I had an epiphany, I stopped using the gauze. The round device is not tight against the skin.
Contradiction, I use the green bulb about half the time I feed. I know how much my tummy holds and now I force down thick healthy mixtures from my blender. I had to learn all of this the hard way/on my own.
My Doctor and his nurse always complement me on the condition of the tube and my health.

All the best,
Russ

HelenB8

Thank you all for your advice and support. It means a lot.

Love Helen

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