1. The day of the actual surgery is scary, the scariest day of my life if I'm honest, but it really wasn't as bad as I'd pictured it in my mind. I really prepared myself for the worst and was very surprised and relieved when I saw that Caleb was going to be okay. Dr. Paley and his team are incredible with making sure the kids are comfortable. The first week after the surgery was the week we digested everything. We came to terms with the fact that Caleb was going to have a fixator for the next 6 months and that he was going to depend on us for almost everything, at least for a little while. It is incredible how quickly we adjusted, though. I realized that I am tougher than I gave myself credit for.
2. Kids are resilient and they don't want to be stuck on a couch. Yes.................. the first week the kids are a bit scared to move around. Yes................... you have to lift them up and help them do almost everything.........brushing teeth, bathing, potty, etc. Yes.................. they sometimes experience pain and they aren't used to moving around with the fixator, but every single day gets a little easier. It is important to throw your child back into their daily routines as soon as you think they are ready. Let them have play-dates, put them in a wheel chair and stroll around the mall, etc. They are NOT handicapped, they just have to adjust to doing things a bit differently.
3. Remember to tell your child every single day that they are strong and brave. Your child will pick up on your feelings and emotions so it is so important to be strong in front of them. Remind them that every day they are closer to their goal. They have to believe in themselves because there are days they will have to do things they don't want to do.
4. Physical Therapy has it's ups and downs but from what we have experienced ALL the PT's are fabulous. They are loving and caring but they have to do what is necessary. They will become your best friends throughout the process. They will teach you techniques to use at home on 'off' days and also in the evenings. It is recommended that you use pain medication 1 hour prior to the PT session, in Caleb's case he is given 3ml of Roxicet. Some children also need Valium for spasms, but we haven't needed very much. The few times that I did give it to Caleb he threw up fiercely. The liquid Valium does not taste very good so I will be asking for the pill form if he starts needing it again.
5. Pin turning at this point hasn't been 'painful' but it is very uncomfortable. Your child might describe the feeling as being 'tight'. Obviously, that is exactly what is going on because the bone is getting stretched and everything is getting tighter. Caleb's has six struts but we don't turn each one every day. Every day varies and he has a very specific schedule. He turns anywhere from 2-6 struts a day. We split up his turns if there are more than 2 in a day. Since Caleb did not have a superankle procedure, they are correcting the positioning of his foot as they lengthen within the fixator, thus this is the reason we are never turning them all at the same time. This is what his schedule looks like:
6. I will devote another post to pin cleaning, but to briefly touch on the topic, it is more of an art than a science. It seems that everyone does it a bit different. The basics are as follows; wash it in the shower once a day with soap to loosen the 'gunk' and clean the leg and pin sites, use Q-tips and saline solution to remove the 'gunk' and skin that accumulates on the pins, and use fixator sponges and/or gauze for drainage of the site. If something looks red, or if it starts to get uncomfortable, have someone look at it right away. It is important to avoid pin-site infections, as they will make your child miserable. You are given a prescription for infection before leaving the hospital. Keep it on hand for infections.
Caleb has already had an infection and it wasn't pretty. His infection started on the incision line of where they put the plate in his knee. It started becoming painful and red and puffy looking. It got to a point that you could press on it and puss would come out. Yuck! In addition, his wires started to become very painful in PT. The wire sites actually looked okay but they were really bothering him. Dr. Paley's PA put him on antibiotics instantly but we had two rough nights before it kicked in. The first night he ran a high fever and was so cranky. The second night he was just cranky and totally irritable. By the third night we seemed to have gotten it under control and he started feeling better. We have been told that some kids are more prone than others to get infection.
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