Wound Care **Warning: Pictures may be Graphic for some**

As I explained last time, we have had a lot of issues with wound care in the past month or so.  Starting about mid-July, we had to treat the hyper-healing tissue on Ava's lowest two pins with silver nitrate sticks.  The tissue looked like it was bubbling up over the wound and it was causing a lot of pain, not to mention stress when we had to do daily shower and pincare.  It was truly horrible - an hour or more of crying and screaming to get the sponges off and then clean the pinsites.  Here's what they looked like:

OUCH!  Just looking at that now makes me cringe.  :(

So, Dr. Standard said we should treat them with silver nitrate sticks, but they are prescription only and somewhat of a pain to get.  So, we had to go to the pediatrician locally to get him to do the silver nitrate treatment first.  We actually went twice before I realized that it didn't seem to be working and re-evaluated with text messages and pictures sent to Dr. S and his PA's.  We went to the pediatrician, he applied the silver nitrate, the next day we did shower and pincare and the nitrate just fell off in the shower, but didn't seem to have taken any of the granuloma off.  So, we asked them to give us a prescription for nitrate sticks to do it ourselves at home (since it was going to be an ongoing process).

Here's what it looked like from beginning to end.  First the granulomas, then the application of silver nitrate.  (It's basically a cauterizing agent, but didn't hurt, thank goodness.)  Then, by the next day, the nitrate had turned the tissue black and was hard like a scab.  

We learned that if we left it on for 48 hours without doing shower or pincare, when it came off, it actually took some of the tissue with it.  The black 'scabbing' stuff seemed to make the wound finally start to heal around the edges, which it was unable to do before.  The last picture is after SEVEN silver nitrate treatments.  It was literally over two weeks that we worked with the silver nitrate sticks and pin care to get the scabs off every other day and then re-apply the nitrate.  Ava did not tolerate it very well. While the nitrate itself did not hurt, it was just one more thing on top of all the other stuff she has to deal with.  And taking off the scab and doing the pin care around them was hard because they were so tender and sore.  :(    The nitrate also stained her skin in places and still has not come completely off.

Finally we had progress.  Once the tissue got down to her regular skin level, it was much more manageable and hurt her so much less.  The following two pictures are from earlier this week.  Finally the wounds are less fresh and looking smaller - closer to the pins themselves.  HALLELUJAH!

Ava has decided that she really likes to soak in the tub. That's right, she gets into the bathtub and manages to get down and lay in the tub of water!!  She can 'float' a bit and really soak those pinsites.  It really helped when we were trying to get those silver nitrate scabs off - soaking for 10 or 15 minutes softened them up and then we could take soft gauze and slowly work it off.  Still not easy, and still a total stress for all of us, but I just keep thinking 'baby steps'.  

Also, remember this long pin in the back of her femur and how awful it looked back in June and early July?  

Well, look at it NOW!

Oh, happy day!  It has finally healed!  Yesterday's pin care was under 35 minutes and with very few tears.  I can't express the relief.  I literally have knots in my stomach preparing for her shower every day.  The stress and anxiety for ME is overwhelming - I just cannot imagine how hard it is for her and it makes me so sad.

I am also a little worried about Ava's weight loss.  She is so thin now....and it's so not like her.  She was always my chubby baby, stocky toddler and solid little girl.  Now I can see her ribs and she is as skinny as her 5yo brother.  :(  We just can't get her to eat much at all, even when it's her favorite food.  This may be in part from the pain medication she's taking, so we're trying to back off the meds a bit so see if that helps.  

Okay, enough gross pictures and wound care talk.  On to something more fun.  We had a little get together for Ava and some of her classmates at a frozen yogurt spot in town last weekend.  I figured it would be really good for her if some of the girls saw the fixator and got used to it a bit.  They were awesome.  They never blinked or made a big deal of it.  A few questions answered by Ava and that was it - they just chatted and ate their sundaes and giggled like girls do!  Made me feel so good about  her starting school next week and the girls who will be there with her. 

We also had a milestone recently....we have made it HALFWAY with the fixator!  We had a bit of cake to celebrate and are really counting down the weeks at this point until removal surgery.  I know that starting school is going to help pass the time for sure.  Can't wait to see this smile more.