Tuesday, February 17, 2009

ostomy issues and weight checks

First, the good news...Riley's weight check today was 11lbs8oz!!! Holy cow! he's actually (finally) gaining weight! Not exactly a chunk roll yet, but getting some good old baby fat on him now it seems. :o)

In other news....his ostomy is keeping me up at night. Sometimes LITERALLY!! We have been having issues with his bag (ok technically, his wafer for those of you in the know) leaking, sometimes 3x a day, which means 3 bag changes a day, and one of those ALWAYS seems to come around 3-4am. UGH But even more bothersome than that, is when he has a leak, what happens is it leaks under the wafer (this is the part that actually sticks to his skin) and that can happen for any amount of time before it actually leaks out from under the wafer and makes itself known via a leak we can see/feel (yuck). This leaking irritates his skin, which then means we have to try and correct his skin breakdown all the while the bag is leaking more and irritating it more. We are currently in the process of trying different bags, but I am at the point that I am ready to pull my hair out about them. I just wish that someone could say "this bag is the best for him" and that be that. But there is no exact science to this. It's trial and error, with error rearing it's ugly head either a) in the middle of the night or b) right when we are trying to walk out the door somewhere or go to bed, something like that. NEVER in a casual, nothing going on moment. and seeing his skin have issues just breaks my heart. So I'm hoping we gain some ground on the skin issues and leaking soon. I know some of you reading this have been there/done that before us, so ANY advice is welcomed!


NO MORE BAG CHANGES!!!!!


Helping mommy blog and check out the new ostomy supplies that came today


7 comments:

Brad, Kellie, Lucy and Baby Carter said...

I used to get excited when UPS left a package on my porch. Now, I know it's some kind of medical supply. I hate that you guys are having trouble with his ostomy. Has the teething monster hit you yet?

Anonymous said...

Ask the dr. if you can use Calmoseptine ointment. They have a website too, it is www.calmoseptineointment.com. It is a moisture barrier and works great. We went through the same thing with one of our twins. I'm Marc King's aunt and he shared this website with us. If you would like to speak with my daughter (the Mother)I will give you her number.

Anonymous said...

Keep drinking that milk baby Riley..you'll be a big boy like Travis! Hoping the ostomy issues will soon be resolved. Love you all, Pauline

Anonymous said...

Weight gain is really great news. I surely hope Riley's ostomy issues can be resolved soon. Poor little guy must be so sore and tender in that area. I'm certain it breaks your heart with every change also. Praying that a solution enters your world quickly. You are a wonderful Mom, and I'm positive you will find an answer for Riley's problem. God's blessings to all!
Hugs, Dale

Fer said...

Awwww Lindsey! He's so cute! WTG on the weight gain!

If you want to visit our blog, send me an email to maferarceamare@gmail.com and I'll be happy to send u an invite :)

Fer

KT said...

Ilex was used on my son's bum for diaper rash when he was in the NICU. The ostomey nurse also told me that I could use it on breakdown around the stoma site. Most of the medical supply sites sell it. Are you using Edgepark?

Are you using NoSting spray? At one point, Duke could not get it. If not, get some. Another ostomy nurse said that the 3M Nexcare NoSting Liquid Bandaid is the same stuff. Some of her patients started using that when Edgapark no longer carried it. However, they may have started carrying the spray again. Spray it on the site and then apply a thin layer of stoma powder and another layer of NoSting.

Once Riley is reconnected, he will have awful diaper rash. You can use the Ilex, NoSting and stoma powder on the breakdown on his bum.

After reconnection, we took all the extra supplies back to Duke. We were using two different types of systems--the wafer from one and the bag from another. Then we also had some full boxes. Since it took some much experimentation to get to a system that worked, we has quite a bit of stuff. We told Michelle she could have it to use on other preemies if she needed it. She told us to keep the stoma powder and NoSting to use on diaper rash.

Email me if you have any questions.

Katie

Anonymous said...

Have you heard of Eakin's Seal? Here is a link so you can read about it...

http://www.eakin.co.uk/template.asp?pid=248

Absorbs leakage and helps heal and protect the skin at the same time...

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