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.

Finally! Some good news!

Ava has had a few REALLY great days this week!  (You know how they say it has to get worse before it gets better?  The last week or two has been B-A-D, so we were ready for it to turn around)

She is getting around a LOT better.  Here are a few videos of Ava getting in and out of the car - all by herself - and walking with a crutch.  She has decided that she really prefers walking with one crutch over the walker.  The only worry we have is when she's near other kids or in a crowd where people may not realize and bump her.  If she were to fall, it would be terrible.  But - around our house and to and from PT, I've been trying to let her use the crutch since she moves faster and smoother it seems!  

The past three days, pin care has not been as horrific as the week before.  We started her on antibiotics last weekend to try to be sure that those bottom pins didn't get a bad infection.  We weren't sure if there was an infection, but they were starting to seep yellowish stuff (yuck!) so I thought it was better to be safe than sorry. Infection is NOT what we need - and can be dangerous with the pins in her bones.  Since starting the antibiotic, she seems to be doing better and the pin sites are finally looking a bit better.  

We've had major issues in the past few weeks with what the doctors explained are granulomas which have appeared around the bottom two 'knee' pins.  They are hyper-healing areas of tissue that have developed - sort of like the skin is trying to heal from the inside out instead of the outside skin healing up around the pins.  This has caused Ava a lot of pain, and in turn, even MORE anxiety about taking the sponges off the pin sites and washing and cleaning/pin care each day.  Every single day has been a battle.  The mere mention of shower sets her into a tailspin of tears.  The fear of pain and discomfort has overwhelmed her.  It is so hard to see my usually fearless girl (the one who rides ALL the roller coasters at Busch Gardens?!) dissolve into a puddle of fear and anxiety over putting water on her skin.   We had to do treatments with silver nitrate sticks - both at the pediatricians office and then at home on our own - for the past 2 weeks but it didn't seem to really be making much of a difference until the past couple days.  I finally think I'm seeing a light at the end of the tunnel with that.  I truly believe that if we can get these pin sites mostly healed, a LOT of Ava's anxiety and fear will disappear.  Maybe not entirely, but at least to a manageable level!

I met at the school with the principal (Director of Lower School for all those familiar with Independent School language) and her 3rd grade teacher last week.  Ava will be in 3rd grade - which is the same grade I taught when I was teaching at Norfolk Academy. :)  So she will be in my old teaching partner's class and I am so glad to know that she will be well taken care of.  I have total and complete peace about turning her over to them every day.  I know that she will watch out for Ava in the best way possible and make sure that not only is she physically okay, but that the other kids are doing and saying the right things, too.  I am fortunate that Ava is in a school that is accessible for her, but also one where each child is allowed the individual care they need - especially in cases like this.  Everyone looks out for each child - the resource teachers, librarians, support staff...they've all asked how Ava is doing and asked if there's anything they can do to help.  I know that they will all be looking out for her.  They stressed that whatever Ava needs, we can do.  If we need to bring her in late or pick her up early, that's okay.  Her teacher said, "It's just 3rd grade. She will be fine!"  :)  I honestly don't know how she's going to adapt and deal with all the stresses of going back to school, but I am sure that no matter what, we will be able to work out a plan to deal with anything after chatting with them.  

Physical Therapy is going well - she really loves the therapist and they seem to be doing all the right things to keep her range of motion where it needs to be.  We are finally back to being able to do stretches and exercises at home more easily and without such a fight, so that makes things easier.  We are still working on her not being quite so 'snappy' to her family members, but that's something the counselor will have to touch more on in their therapy sessions.  (One more appointment to fit in during the week!)  I am worried about all this WITH school in another couple weeks.  Our current plan is for her to be in school the full day 8am-3:30pm and then have PT 3 days a week in the evening.  But fitting in homework and counseling and 3x/wk PT may prove to be a bit much.  I guess we'll just have to see.  

With the help of my sister (the pharmacist), we have finally figured out (I think!) the best dosage of medicines....so we are not going to do anything different for a while on that front.  Whew!  

Looking ahead:  We have 7 weeks of school before the removal surgery (Oct 10th!).  I found out recently that we are supposed to stay in Baltimore the following week so that their physical therapists can work with her on re-learning how to walk properly, bend her knee, etc. and teach her (and us) the best stretches and movements to help maintain her range of motion.  She will be fitted for a brace called the Scottish Rite Brace and they will put it on in the OR.  It is removable, but she is required to wear it 23/24 hours a day....so no real break from the restriction and movements after the fixator comes off for about 6 weeks.  :/   When we come home from Baltimore after removal surgery, her physical therapy appointments are upped to 5 times a week.  (yikes!)  We will have follow up appointments in Baltimore after that and she will hopefully be released to more and more weight baring and more and more activity in the months this fall.  Our hope is that by Christmas she will be back to normal activity.  Please send a prayer that this is the case for her.  

For the last 2 weeks of her 'summer vacation', we are going to try to sneak in as much fun as possible since we really haven't had much at all so far.  I hope that things are truly on the upswing now.  Any prayers or good thoughts you can send our way would be GREATLY appreciated!!