When I got back, she was choosing a movie to watch during PT, so everything seemed ok. After the initial physical therapy day where parents are there to answer questions, they want us to sit out in the hall and not be right in there with the kids so that they can work with them without distraction or anything. So, I sat in the hall and talked to Abby for the first time about anything KGP-related. Felt weird to try to change my brain waves to think about clients and files and orders after truly focusing only on Ava for the past 6 days straight. There is just no brain power left for anything else with situations like this. I cannot imaging having a full time job and having a child with any type of disability or disease. I am not equipped to compartmentalize like that, I guess.
Anyway, Ava did a fabulous job at PT despite the fact that she hadn't had her pain medication - leading Amber to counsel me that maybe we should start either cutting back on the dose or stretching out the hours between doses. During PT, we saw a family coming around to see the PT area. It was a teenage girl on crutches with her parents and Dr. Standard's PA. She had a few questions for Ava, but when they saw her walking with the walker, they were shocked that she had just had surgery on Wed. of last week. The teenage girl even said, "I was really scared until I saw her." which made me feel really good that we were able to bring some comfort to her. When we got back to the Hackerman-Patz House, Ava met and hung out a little while with another Perthes patient who had the same ex fix surgery one week earlier than our surgery! His name is DJ and he is turning 9yo soon. They played Wii together while his dad and I chatted. He is a very athletic kid (you can tell just by looking at him!) and I can definitely tell by the way he maneuvers the wheelchair alone. He looks strong and fit - his dad said that he was pretty much weaning off the pain medication and onto just straight Tylenol before they left the hospital! Ava will have PT with him in the pool tomorrow, so it was nice to chat with them.
After that, we had visitors from home! Brooke brought Lily and Bo from Richmond to see Ava (and hit the Baltimore Aquarium while they were up here). It was really nice to see some familiar faces and have lunch and chat with friends!!
Ava played games with Amber and Mimi today and seemed to have fun doing that.
Today was the first day we did the shower/pin care routine by ourselves (without a nurse or OT helping) and it was not fun. We survived, but not without a few tears....this time all Ava's, although when she said, "Just LOOKING at them scares me SO MUCH, Mommy!", I was so sad for her. To be completely frank, when all the sponges are off and the wounds are visible, it scares the shit out of me, too. At least two or three are still seeping, the old sponges have blood on them (dried and fresh) and I see tissue around the holes. There are also abrasions and punctures around some of the pin sites that I wasn't really prepared for. I'm assuming they are from whatever tools they used to drill the pins into the bone. She is also bruised all the way from her incision down and around her labia and upper thigh crease. It's turned to a greenish color today, finally, after being black and blue and purple...but she's still all swollen on that side and her undies are too tight to really wear comfortably.
So, the anxiety around showering and pin care for her is about an 8 on the pain scale. Not that she's feeling that much pain, but her mind is perceiving it because the wounds look so bad to her. It's so foreign and terrible for a little kid to see such a massively huge metal structure drilled into them and the bruising/swelling/bleeding/open wounds. She cried pretty much through the whole entire thing, from taking the sponges off (about 10 of the 15 of them we took off before the shower - the ones that are not sitting up against her skin) to sitting on the bench in the shower, to putting the water on her skin and then closer and closer to the sponges and then to getting the closest-to-the-sponges off. The bottom two were very sticky - the dried blood and guck made the sponges stick and peeling them off made my stomach do flip-flops. Then I had to use a long sterile q-tip and/or some gauze with saline on it to get the little pieces of bloody sponge stuck on the pins. Blech. At that point, we had covered the ex fix with a towel so that Ava couldn't see what I was doing. When she wasn't looking, she was pretty calm. As she looked, she freaked out more and more. I think she is so nervous that what we are doing is going to hurt that she can't separate that from the actual feeling itself. :/ She even put on her little sleep mask that my mom got her for a little while to try to 'block it out'.
We got the new sponges back on (slowly!) and got her back in her chair and it was time for her medicine again. She started feeling a bit sick to her stomach, and I thought it was just nerves. By that time, it was dinner and we went down to get some pizza that had been delivered for all of the HP House residents. After that, Ava started feeling even more nauseous and complained about her tummy hurting so we went up to see if maybe she needed to go to the bathroom. Meanwhile, another little boy who is also 8yo and having the ex fix surgery tomorrow came to visit! His mom and I have been communicating on Facebook and since they are just starting their surgical journey tomorrow, I thought it might be nice for us to meet and for him to see Ava - he also got to see DJ, which was nice. I shared a bit of our journey with them - our hospital stay do's and don'ts as well as just general 'you can do it' pep talks as they get ready for tomorrow's big day. It does not seem like it's been 7 days since surgery day for us for sure. But my body definitely feels it. My back is aching in multiple places from lifting Ava and from all the kneeling on the floor to support her leg or help her walk. Ava didn't feel like talking much, so she came up to the room with Amber and mom while I chatted with Cooper's family.
When I got back to the room, Amber had given Ava one of the Ativan's (which is an anti-anxiety med, but also helps with nausea) and it REALLY seemed to make a HUGE difference. I don't know if it was just given at the right time or if that is going to be a good thing for us to do for her. I saw the biggest smiles I've seen yet tonight and she was super relaxed and cooperative for her stretches and extender bar replacement at bedtime. I told her that if she took her medicine easily tonight, I wouldn't wake her up overnight and we would just take it again in the morning when she wakes up. She was VERY excited about being able to sleep all night - and I honestly can't wait to get to bed myself knowing that I don't have to set any alarms and I can just sleep through the night. Woo hoo!
Here she is laying in bed with her altered pajamas (I did not anticipate how BIG this thing would be on her - we are going to have to do more adjusting to things to make them work, I think! But you can get the idea. The blue thing in the middle is a cold pack she had put on because of a muscle spasm.
Night, all.
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