Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, June 06, 2011

About those Pins

Axel's halo pins are infected.


On Friday I emailed pictures to his surgeon because the skin was starting to come away from one set. In fact, I sent pictures of some of the others as comparison because they looked great.

Operative word: LOOKED

By Sunday morning three sets of pins were looking horrible. One of the back sets, which is very difficult to see because of the hair and angle of the crown piece has a large ulceration just below it. Lovely. So I sent new pictures.

This morning a prescription for antibiotics was called in, and we start a new cleaning regimen. Years ago, about the time I started this blog, Angela spent an entire winter with an open wound on her belly that came from a reaction to gortex she had installed years prior. These wounds on Axel look very similar, like possibly he's reacting to the titanium the pins are made from.

Our old cleaning routine involved swabbing each of the pins with q-tips soaked in soapy water. Now it involves irrigating the wounds. This is no small feat when the vest ABSOLUTELY CANNOT GET matter what!!!! Also, irrigating involves hanging Axel's head off the end of a bed so the water can run directly into a tub. Fun. NOT! Axel doesn't really think so either.

I used to lay him the long way on the bed to wash his hair, then clean the pins when he was sitting in a dining room chair so I could see them as well as possible,  but to irrigate them...well I can't get to his pins with the bed turned that way so I need to rearrange his room a bit. In the meantime, he lays with his legs folded which, if you have  kid with DS, you know this is just a natural thing for them to do anyway! So here is all my materials set up.

And here is Axel hanging off the bed. It's hard to see in this picture, but  his head is all the way off the bed. This feels very scary to him, but the posts and hard vest are supporting his head completely, so while he feels like his head is suspended in air (well I suppose it is!) it's well supported.  I'll spare you from the grossness of posting pictures of infected pins.

First I wash his hair, allowing some of the water to run over the pins, loosening all the crusty stuff that has formed overnight. Next I take the q-tips and clean all that gunk off. After that I use syringes full of plain water to quirt into the holes around the pins, where the skin has pulled away, cleaning all the rotten gunk out of there so the skin can heal.

This is worse than when I had to clean Angela's wounds. It's all psychological I know. It's because the pins are going right into his skull for cripes sake, and that is really gross!

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