Infection, Infection.......GO AWAY!

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.

The Brace

Due to Caleb's difficulty with getting his knee straight, we have had to get a special brace for him to wear at night and as much as he can during the day. Again, the main concern with tibial lengthening is to make sure that the knee does not develop a contracture. A contracture would result in the doctors to stop the lengthening process all together so it is very important for Caleb to be able to get his leg straight. The brace is made by a company named Dyna-splint and so far they have been wonderful to work with. This new piece of hardware does come with a pretty price tag of $1138 and because the company is based out of Maryland, our insurance does not cover the cost. Dyna-splint will work with you by splitting the bill over a six month period. Lauren, the rep for Dyna-Splint makes everything very convenient as she comes to you at the clinic to make the brace and to follow up with any other questions or concerns. I have had to call her to the clinic a handful of times because of various minor issues with the brace and she has come before or after Caleb's PT appointment to keep it convenient for us.

Caleb is not at all happy about wearing the brace because, of course, he likes being able to bend his knee, but in addition to that, it is a bit cumbersome and uncomfortable. The brace does allow for a bit of slack so Caleb can bend his knee a little bit but he is just miserable with it on. I have been giving him medication (2mg of Valium and 3mg of the Roxicet) in the evening to make it tolerable as he sleeps. I never ever get used to the fact that I have to give these heavy drugs to my child but the doctors and therapists have assured me that the medication makes this whole process so much easier on the child.  In addition to medication, I have set up a chart in my house that is similar to a 'chore chart' but it also contains additional goals such as wearing brace, strut turns, pin cleaning. Every day, Caleb earns a star for wearing his brace (6 hours during the day and at night when he is sleeping), he earns a star after all of his turns and after his pin care. I also have a few other goals as far as chores and behavior for Caleb and his siblings and at the end of the week, everyone has the opportunity to earn gifts out of my treasure bag. The amount of stars they earn determines the amount of prizes they get. This might seem  trivial in comparison to all of the hard work that Caleb is doing throughout the week, but it has been working for us. I throw in mostly dollar store items or inexpensive items that I pick up along the way. All the kids participate, and they all love it. My advice........GET A TREASURE BOX!!

First Post-Op Appt.

Last Wednesday was our first post-op appt. at Dr Paley's office since the surgery. We didn't get to see Dr. Paley at this appointment but instead we saw his PA, Servando and he went over all the x-rays. I am very happy to report that we have already gained 1 cm in length! Hooray! I can't tell you how excited I was for Caleb. He has been working hard and we are celebrating all the milestones; however small they may be. Here are a few pics of Caleb's x-rays:

To celebrate our 1 cm of growth we made a quick trip to the Palm Beach Zoo about an hour and a half before it closedg. We raced through the park but we did have some fun and I have promised Caleb that with every centimeter he gets a special trip to the place of his choice. He has been excited about that! I'll post some pics of the zoo once I get them off the camera.



A Time For A Little Fun

We were very excited to be invited on a boat over the weekend as a way to unwind and let loose a little. We had a wonderful time and were so grateful for the invitation. We enjoyed the beautiful weather, caught some fish, and even saw some dolphin!



 Nora and I were having fun and playing it up for the camera.

It's amazing what a little fun does for the spirit. We ALL needed it.