back brace and g-tube

[LavenderPeach]

Okay, I have another question for you guys. DS has a back brace for scoliosis. He also has a g-tube so there is a hole cut into the brace for it. The problem is that his tummy wants to bulge out through the hole which makes a funny ring on his tummy and sometimes, depending on how full he is, it can bulge out quite a bit and the ring gets dark pink which doesn't seem good. He also has reflux. Back brace, g-tube and reflux really don't mix well together. I try to loosen the brace before meals and then tighten it later but his stomach is so slow to digest that it takes a long time for him to be empty enough to tighten the brace and by then, it's time to feed him again. The lady who made the brace (sorry, blanking on what the official term is for her) made him a little patch to put over the hole that velcros on to push his tummy down but I'm worried that it pushes the g-tube down too much because there really isn't a spot for the g-tube and the patch is almost flat. Has anyone else had this problem and did you find a solution?

The patch idea is almost good but it needs to be slightly different. I've been trying to see if I can think of an idea myself on how to modify the patch since the "brace lady" doesn't seem to have any other ideas.

Not sure if any of that made any sense but if anyone has any suggestions I would love to hear them. Thank you!

 

[SueM in MN]

The problem is that his tummy wants to bulge out through the hole which makes a funny ring on his tummy and sometimes, depending on how full he is, it can bulge out quite a bit and the ring gets dark pink which doesn't seem good.

No, you are right, that is not good.
The dark pink is a sign of pressure. If it stays dark pink, that is a sign that the skin has been damaged. With enough damage, the skin can break down into an open area.

The patch idea is almost good but it needs to be slightly different. I've been trying to see if I can think of an idea myself on how to modify the patch since the "brace lady" doesn't seem to have any other ideas.

Not sure if any of that made any sense but if anyone has any suggestions I would love to hear them. Thank you!

The brace lady is probably an orthotist. That is the name for a person who plans, fits and makes orthopedic braces. She probably has not run into the combination of things your child has very often.

I'd suggest you ask to see a Wound, Ostomy, Continence Nurse (WOCN).
WOCNs specialize in the care of patients with wounds (and preventing them) and ostomies (the g-tube is a gastrostomy). Sometimes there are other appliances that can be used that would help the situation. A WOCN should be able to work with the 'brace lady' to come up with a solution that works.

 

[LavenderPeach]

No, you are right, that is not good.
The dark pink is a sign of pressure. If it stays dark pink, that is a sign that the skin has been damaged. With enough damage, the skin can break down into an open area.

The brace lady is probably an orthotist. That is the name for a person who plans, fits and makes orthopedic braces. She probably has not run into the combination of things your child has very often.

I'd suggest you ask to see a Wound, Ostomy, Continence Nurse (WOCN).
WOCNs specialize in the care of patients with wounds (and preventing them) and ostomies (the g-tube is a gastrostomy). Sometimes there are other appliances that can be used that would help the situation. A WOCN should be able to work with the 'brace lady' to come up with a solution that works.

I've been keeping an eye on the skin and trying not to let the brace put too much pressure on that area but the brace has to be tight. The skin hasn't broken down but I have to be constantly checking it to make sure.

Yes, orthotist! That's it, thank you! I couldn't think of that word earlier. I know she's done some other braces with g-tube holes because she has said that they always cause a problem but she doesn't seem to have a very good solution and just sort of acts like that's the way it has to be. I'm convinced that there must be a solution out there somewhere.

Thanks for the suggestion of the WOCN nurse. I've never heard of that before. I'll definitely be asking around about that.