Grace for Rett » Grace's Life with Rett Syndrome

And now for something new (bed sores)

(Just when you think you’ve seen it all)

There’s always something new around the corner when you have a non-ambulant kid.

But first a little story to get us going:

Once upon a time (the day before we went to Florida for Christmas), we noticed Grace’s left leg wouldn’t straighten without her shaking and getting noticeably upset. For a few days she was quiet, withdrawn, very still. I started to remember these being signs of pain with other kids I know who are non-verbal. Having had the pleasure of enjoying American healthcare services sans health insurance, we decided to get her checked at the hospital here before we headed out.

Lo and behold, she has a little broken hip. A tendon had snapped away taking the bone it was attached to along with it. The only treatment was pain management so we took her home (after social services decided we weren’t deadbeats) and packed for 3 weeks in Florida.

So now for something entirely new…

rett-syndrome-bedsores_0047

Our very first morning we pulled back the covers to find a most disgusting somethingorother had developed on Grace’s heel. There’s no way for her to get a blister because fact is she doesn’t move. In fact, her shoes pass for brand spanking new when she’s done with them.

So after researching, asking questions online, forums, groups on Facebook…I decided what we were looking at is actually a bed sore also known as a pressure sore.

// why //

Pressure sores aren’t caused from rubbing. They’re way more sinister than that. When pressure is placed on an area for many continuous hours and the person can’t move to shift that weight, blood flow to the area can get restricted causing the tissue to die. So that gigantic pussy thing is just the tip of the iceberg. These things go deep. And they’re actually quite dangerous and prone to infection.

// how //

How to treat it was a tricky thing to figure out when we were 3k miles away from her medical team. So we kept it clean and dry and propped her feet up on pillows.

The other heel started looking red and we thought we’d caught it early but once we got home that one turned into a big thing like the first. And now that we’re home that one is being treated properly with dressings and the community nurses come to the house to change the dressings, measure the wound to see if its growing, etc etc. And she’s on some heavy duty antibiotics because it became very angry and hot.

The OT is coming this week to assess the way she sleeps so that we can alter her sleep system to keep her heels off the bed from now on.

I guess it just feels like once you’ve seen it all, know how to deal with everything that comes your way, something else pops up and it’s left me feeling that thing again…that deep knowing that every day we could wake up facing something scary.

So thankful for the NHS and Grace’s team who never fail to jump into action when she needs them.

Mary Duke - January 10, 2016 - 10:52 pm

Just another problem for girls with Retts. The list seems to just go on.

Rachael West - January 11, 2016 - 1:57 am

Thanks for sharing, something else to keep an eye on.

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