Sunday, March 1, 2009

Sunday Evening Update...

Oh what a day -- a very long day I do not want to repeat. This afternoon Gavin's pain became very severe. No amount of narcotics was taking the edge off so the docs ordered a stat CT scan of his belly. The answer was clear -- Gavin needs to pee. They said his bladder was so enlarged that it was filled a good portion of his abdomen. They replaced the Foley catheter and he has found some relief. So now we will let the Foley in place for another few days and then try again.

Now for a question for all of my Ostomy mothers: What do you find to be the best type of bag? The bag he has on now is way too small for his amount of output, but the larger sizes are too big to fit under his G-tube stoma. Anything you wish you had known when your child first got their ostomy? Gavin's is a jejunostomy, so it's a different than the typical ostomy -- but I think it's the same concept.

6 comments:

HK said...

I've had a few patients in the past with short-gut syndrome... similar to what's happening with Gavin's jejunostomy. The best solution we found for their high output was to connect trach tubing to the ostomy bag outlet, and have the tubing empty into a 24hr urine container. Not the prettiest solution, but for an adult it was the only way to deal with the output. You may need to look into attaching some sort of extra tubing and a container or bag to the ostomy bag.
Hope that helps or sparks some ideas.

Tiffani said...

I'm so sorry to hear about your long day...am going to pray now..wish I knew something to tell you to help you...hope others will give you some input!!

Hang in there!

Cammie Heflin said...

I wish I knew the name of the bag but I can describe it. We got some samples when Addy was in the hospital and really liked it. It was a soft material on the side that touched her body and had koala bears on it and the pouch Velcrod (sp) shut. I hope things improve for this little guy soon!

Anonymous said...

I am not a child. However I had a jejunostomy for 8 years. the output is high and liquidy. I agree with HK who said hook up to a foley back or some kind of bag. Even after my transplant 3 years ago I went trhough a stage of fast liquid output They are bags that have a twisty turn end that connect to tubing and then we connected it to the foley bag. I cant remember what kind of tubing it was. but that is probably the best bet for now. His output WILL slow down. I assume he wont be getting feedings. I can find out what it was from my old nurses if it helps, but someone should know where you are or should be able to come up with someone. Maybe all of hte swelling from the surgery is pressing on his ureters and causing him to not be able to pass urine. HOwever now that you know what the pain was, I Hope they can get it taken care.
We will be praying for you, your family and your cute little guy
Steph

Anonymous said...

Karen,

Our favorite bag is the Hollister 8460 with the Hollister Adapt seal(7805). The end of the "spout" at the bottom of the bag twists open and shut and I have never had any issues with it leaking. The material that acutally attaches to their skin is soft and pliable and doesn't seem to cause Ash any discomfort when attaching or removing. It is also easy to trim and modify to fit the area that you have to work with. When their output is really high I agree with the other commenters that attaching it to a urine collection container with tubing(that happens to fit the end of this bag really well) is the best solution. Ash has had her ostomy for 2 1/2 years now and it looks as though we will have it for a while longer. I hate it for her, but we have learned that it is just part of her life. Our biggest obstacle with it is trying to find clothing that is comfortable for her. Denim is out of the question. She's never been in a pair of blue jeans. In the grand scheme of things it doesn't really matter. She's here and each day with her blesses me more and more. I hope this info helps a little. I check on Gavin each and every day and am wishing the very best for him and your family. Sincerely, Trish Adams

Heather said...

Oh, those pee pee dances we have to do!But I will do them.Anything for sweet Gavin.Hoping and praying for great things this week.If you don't hear from me much this week, just know I will be thinking of you and praying for you all.