Bed Sores

I know how much work this is, but you may have to change her sides more often. I would also talk to a specialist Wound Doctor. They do have patches to help the healing process. I would also address the Doctor about giving her water and how.

Hi S., not sure if you use this group or not but I found this group where families can ask each other questions regarding a child with MLD.

http://www.mldfoundation.org/mld-family.html

I'd think families there would be able to help you more with such questions.

Best to you.

:)

Is your daughter wearing ted hose too? These type of medical hose helps the circulation throughout the legs. Massaging will help her a lot. Even though she is being turned every two hours, her body is just resting on that side and it limit the circulation. Each time you turn her, massage her limbs, back, hands....etc. This will help in circulation, and will help in preventing bed sores. As her doctor, or see if there is a medical supply store near you, they may have these "mouth swabs" that you can put water on, and just swab the inside of her mouth to moisten it. The liquid that she is being fed, is also hydrating her, so no worries there. I hope this helps. Also, take these ideas to her doctor and see if they are right for her before taking any advice on here ok. Just in case her doctor wants something different done, or doesn't want something done. :-)

You don't need to give her anything orally, her g-tube feeds will keep her hydrated. If she is gagging , when given anything by mouth, she could breath liquid into her lungs & cause pneumonia. Someone else mentioned the swabs, those work really well. They have some that you wet yourself & others that already have liquid on them ( if I remember some are flavored). Her doc should be able to write you a script for them.

ETA: Sorry, just read your added information. The swabs are basically just a small sponge on a stick, that is moistened. So you could just use a wet cloth, to moisten her mouth.

O.K., First of all don't use lambs wool - it can add pressure to the skin, and it can get bunched up adding even more pressure. Secondly, it is no longer recommended that you massage areas prone to skin breakdown. It can cause further injury to the skin.

How deep are her pressure sores? The doctor should beable to order treatment for the existing pressure sores - there are many treatments available depending on the stage of the sore. Duoderm is a protective dressing that can help prevent further damage to a pressure sore.

To prevent: Keep meticulous skin care, do not scrub or rub the skin, pat it gently instead. Keep areas prone to break down very dry by gently patting the area dry.
Turn and reposition atleast every 2 hours. It takes two hours for pressure sore to develope. If you notice reddened areas developing apply a barrier cream that has been approved by her MD.

I know you have an air bed - a good air bed will help prevent pressure sores. check out the clinitron beds (insurance may cover for it if she has an open pressure sore) Clinitron® Rite Hite - Hill-Rom
www.hill-rom.com/usa/Clintron_RiteHite.htm

Do you have visiting nurses who provide wound care for your daughter? The visiting nurse should be an advocate and talk to the doctor about additional or different treatments. The Visiting Nurse along with the doctor should be able to convince the insurance to pay for the clinitron bed. I have done this for my patients.

Make sure that your daughter is not sliding down in her bed, this can create a shearing injury that can develope into a pressure sore.

If your daughter's doctor told you that she cannot have anything by mouth, then don't give her anything via mouth she could aspirate (fluid could go into lungs) and end up with aspiration pneumonia.
Check with your doctor about the use of ice chips, pops and/or moistened swabs to help provide mouth comfort. Make sure that you keep her mouth clean and fresh this will help with discomfort.

I do not recommend giving your daughter anything by mouth unless it is first approved by her doctor.
I do not recommend instituting any treatments or interventions without first checking with her doctor to make sure that it is safe and appropriate for your daughter's individual situation.

When my father developed bedsores we used a zinc-based product called Calmoseptine. If we saw a spot developing we would gently put some on. Also a bed which changes pressure automatically if available.

the only "cure" for bed sores that I know if is frequent moving and keeping the skin moisturized.

There is a product that a friend used on her mother - Terrasil - I think it worked, I don't know.

A lambswool pad.
If you can't find that, an alternative would be a lambswool rug.
Look online, Google Search "Lambswool pad."
You will see it.
lambswool is known for providing comfort and breathing ability and for helping per bedsores. And it is NOT hot.

You really need to ask her Doctor, about feeding her water/how frequently/when, etc.
And also, how to clean or change her feeding tube, unless you are taking her into the Doctor, to do that.
Or, get a home nurse who can help.
AND, per her oral inability to eat/swallow.... you really need to speak to the Doctor, about that.
She can, asphyxiate or even get it into her lungs, if she chokes.

Didn't the Doctor or Hospital... tell you, about how to care for your daughter per her feeding and feeding tubes???
If not, you need to tell them, to teach you how.
And what specific "diet" she needs, in order to stay healthy.

My friend's MIL is on a feeding bag and can't eat orally... and she has to REGULARLY, go to the Doctor, to change it or clean it and they are told specifically HOW to feed her or what she can or cannot have.