I can't believe that I haven't updated the blog in so long! We got to the holiday season and everything just dropped away!
So, after our appointment in November with Dr. S where he said 'slow journey, not race' and we had the knee brace made, we continued to do PT 2-3x per week and stretches at home and try to encourage Ava to work hard at range of motion. By our cruise in December, nothing had changed.
We had a wonderful time on our vacation to the Caribbean - Ava loved it and we all had time to rest and relax and reset. Traveling was HARD with a child who can only bend about 55 degrees at the hip, though. She can't sit up straight in any chair, so driving, flying, etc. was rough. If you have never tried to sit in a chair without bending in the crease between your hip and leg, I urge you to try it. After about 10 minutes (at the most!), your lower back starts to ache and at about 30 minutes, your leg and back are on fire. So, the day of travel to FL and the day of travel home were really hard. I was very worried about her on the ship in a couple ways. First, the pool on deck. I was so worried that she was going to slip and fall, but I wanted her to have a good time and just be a kid and play. It's so hard when you're a parent and you want to create these experiences for your child to be able to just be a CHILD after all the surgeries and physical setbacks and all the ways she's been separated from her peers this past year. It's heartbreaking, really. And the ship has a "kids club" where you can drop kids off and they have them put with their own age group to do activities, games, etc. First, I was worried about dropping her off and not being able to really explain what was going on with her...why she can't sit on the floor like the other kids, why she can't bend her knee, or hip to sit, why she is not allowed to run or jump AT ALL, etc. And I was worried that the other kids would maybe make fun of her or make her talk about why she couldn't do some of the games. They play a version of dodge ball called 'gaga ball' and they did other running activities. I just want so much for her to be an 8yo and play. :( But she had a great time and everything went smoothly for her. She made friends, got her face painted for the first time ever and we truly had a nice vacation.
The week we returned, we headed back to Baltimore for another checkup. Technically, we were 10 weeks post removal surgery and Ava's range of motion numbers were dismal. Her knee flexion was around 55-60 degrees and hip flexion around 60-65 degrees. Her external rotation is barely anything - maybe 5 degrees. These are bad. Most kids 8-10 weeks post removal are past 90 degrees in both hip and knee, if not full range of motion restored. I called early that week and asked the PA whether or not Dr. Standard would want to do a surgery while we were in Baltimore to assess her range of motion under anesthesia like he had mentioned at our last appointment. He really wanted her at least to 65 degrees and she was BARELY making that....and only sometimes. The PA said she talked to him and he said that we wouldn't really need to do that yet. So, I decided to take Ava alone since there was no need for Ryan or my mom to come if they weren't doing surgery.
Fast forward to the day of the appointment. They took more Xrays and he came in to talk to us about Ava's progress. He basically said the same thing. This is a slow journey for Ava. There have been other kids who have had a tough time with regaining range of motion and even one who spent a year and a half to get back to 'normal'. I asked about anesthesia/surgery and he said he thought it was fine to wait and see what happened over the holidays and we could do it in January if nothing changed. I pushed back a little saying that I really didn't see how anything was going to change and that I really wanted to know what was going on. I knew that my January calendar with portraits was busy and didn't really know if I could come up to Baltimore again for a few days at a time. He said, "Well, if you are really concerned, I can fit you in tomorrow morning. I'll make Ava my first surgery of the day and we can get it out of the way." Ava was NOT happy. She really didn't want to miss her last day of school and holiday party and immediately burst into tears. But I knew that we should get it out of the way....we were in Baltimore already, and if it could help, I wanted to do it sooner rather than later. I convinced her (okay, maybe bribed her) to accept that it was for the best. We hung out with Annabelle, another little girl who went through the ex fix process recently and was there for her 2 week post op checkup and they had a great time together.
So, bright and early the next morning, we headed back to Sinai Hospital and checked in for surgery. I honestly didn't realize how hard it is to have a child go through surgery before. Even 'low-risk' surgery. This basically was like exploratory surgery. They put her under anesthesia and his plan was just to move the joints around to see what happens when she is asleep and not feeling pain or fighting the movement. He said that sometimes scar tissue or stiff joints can loosen just with a little manipulation and that he can't really do too much of that RIGHT after taking out the ex fix pins for fear of breaking bones. Young children's bones are still not as hard and so with the holes in them, they obviously can fracture more easily. So, 10 weeks post removal, the holes are not as dangerous. But leaving your child unconscious in the OR and sitting in a waiting room not knowing what is going on is so nerve wracking. Even though I knew that she was fine, really. Barring any crazy complication, she was fine. But crazy complications happen and it is hard to sit in a waiting room, alone, and just wait. Not knowing. He said it would be about 20-30 minutes....I was in the waiting room well over an hour. And since we weren't planning on surgery and no one came with me, I was alone with my thoughts and fears.
When I got to the PACU (post anesthesia care unit - in other words recovery), Ava was literally coming up off the bed. Crying and whimpering and her body was bucking. I was shocked - that had never happened the past two surgeries. She was asleep when we got to the PACU those times and just slowly came out of anesthesia. Apparently, the medicine they give before surgery to young children....they call it 'happy juice'.....helps them to sleep more deeply and wake up more easily. Well, before the surgery, Ava refused to take the 'happy juice'. She said it tasted bad the last time and didn't want it. I thought it was just for her to be calm and not remember going into the OR, so I didn't push her to take it. They didn't tell me that it would make coming out of anesthesia so awful. :( It was hard to see her so upset and uncomfortable. The nurse said she wasn't really awake, but the tears escaping her eyes and the confusion I saw was not fun.
Dr. Standard came in shortly after to talk with me. He said that he was able to manipulate her knee AND hip both to just short of 90 degrees in the OR. He didn't really feel anything big 'let go', so he wasn't sure if anything would change in her basic range of motion quickly. But he definitely said the joints *can* get there. He even took a picture in the OR and sent it to my phone as proof! He said he injected dye into the joint and watched as he manipulated to be sure that he didn't see any physical reason that things aren't bending in her hip. So, it is just a matter of continuing to work at it. I was not sure I liked that answer. Not sure I knew if it would be better or worse. If there was a physical problem that was causing the lack of ROM, we could maybe 'fix' it. But there isn't. So what do we do next??
So, we packed up and drove home - it was a long drive and we had to stop every hour or so because it's hard for her to ride in the car comfortably. And we continued to work on PT over the holidays.
More in the next post!
