While some say they have been blessed to have never experience a pin site infection throughout their lengthening, my little Caleb falls at the other end of the spectrum. He has had non-stop infections since about two weeks post surgery. We are hypervigilant when it comes to our daily cleanings but at the same time we are a busy family of six, with two big dogs and two kitty cats. The other day I even found a doggy hair stuck on Caleb's pin. Yuck! Caleb loves to cuddle with his puppy so it is impossible to keep Caleb and the dogs separated. I also tend to think that Caleb's body just does not like the pins and wires. One wire, in particular, has been a great source of pain and discomfort for Caleb since day one. This wire is located in scar tissue where he had a previous surgery for a tendon release and it oozes all the time. Caleb had been on antibiotics since our first post-op appointment almost a month ago. My poor little guy. His body is taking a beating, for sure.
I truly feel that the hardest part of the lengthening process for us is keeping these infections at bay. He feels severe pain when they get infected, physical therapy is miserable and he cries all night and can't get comfortable. Around two weeks ago Caleb complained of SEVERE pain in his knee and we had to cancel his PT for the day and take him for xrays. It so happened that we were also scheduled for our 1 month post-op appointment with Dr. Paley but it also meant that we were going to have to wait a LONG time for anyone to see him. I had been warned but I could have never expected to be waiting for as long as we did. Our appointment was scheduled for 3:45pm but due to Caleb's intolerable pain in his knee we signed in at 1:30pm. We took x-rays fairly quickly and we stepped out for a quick bite to eat as the office was completely swamped and I knew we would be there for a while. We were back at 2:30pm and waited as Caleb's pain intensified even more. It was so bad that the roxicet was not doing the trick and I had to give it to him every two hours instead of every four to keep him from screaming and crying out in pain in the waiting room. Would you believe that we were not called back to a room until 7pm that evening? I was so upset and felt that Caleb was really neglected that day. I know the office was swamped and I didn't want special treatment for Caleb but he was in severe pain. Someone should have been called just to check on him to make sure he was okay. I was in tears! This was by far one of the hardest days we have experienced. When we finally did get seen by Dr. Paley he decided to cut back on Caleb's turning schedule which meant that we were now doubling our time for turning. Of course I want this over for Caleb as quickly as possible, but I also want the best outcome for Caleb and the least amount of pain. Slowing the bone lengthening allows for the muscles and tendons to catch up a little better.
We never really could figure out why Caleb had this severe pain in his knee but my Mommy instincts tell me that it was probably infection related as this was the spot for his first infection, at the site where they inserted the 8-plate. Within a week of this appt. Caleb's knee started oozing puss and stitches expelled from the incision line.
As of now, Caleb's knee is looking really great but he has a pin that looks a bit gooey and the wires are still a major complaint for him. PT was so hard for him today and he was screaming his head off. I haven't cried for a while during PT but today, I cried. Tomorrow we have an appointment with a PA so hopefully Caleb is doing well. It is true what they say that it gets harder the second half of the lengthening.
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