Continuing on from our previous blog post . . .
3 weeks ago Kyllian had his tenotomy and was out of his procedure wearing his last ever cast (or so we thought), we went back to the hospital armed with our newly purchased special socks with grips on the bottoms and long enough to go to at least his knee, we eagerly awaited our now 15 week old baby to be fitted with his first ever pair of ‘shoes’.
I’d done a bit of research by this time and joined a few Facebook groups for children with clubbed foot and So when the nurse entered the room with what looked like some kind of torture device i wasn’t too shocked but if I hadn’t seen one before (Thank you google) i’d be rather concerned by what the nurse was planning on doing to my baby’s teenie chubby (if some what wonky) tootsies.
That first day/night in the boots and bar was horrible I’m not going to sugar coat it, Kyllian wouldn’t settle, he was upset constantly, was clearly very uncomfortable with his new accessory and sleep was virtually non existent. But we persisted and by the time it came for us to have his 1 hour free from the boots and bar I think we were all as relieved as he was. I took his boots off and then his socks only to see what looked like 2 big red welts on the front his ankles where the straps had been (the first of many boot related injuries). I felt awful as I just thought he needed to get used to the boots and so persisted with them staying on, and I thought he was fussing due to not being used to his legs constricted and held in place, but he must of been in so much pain. When I saw it I hugged him tight and silently cried as I held him close, because me trying to help had caused him pain.
I left his boots off that night as I didn’t want to cause him anymore hurt and the next morning I called the lovely nurses at UHCW childrens outpatient clinic, who told us to pop down so they could check his feet and make sure his boots and bar were fitted properly. So off we went back to what felt like our second home by now and the nurses checked his feet, we were given some dressings called mepilex boarder (kind of a fancy plaster) and an odd shaped piece of rubber (a pringle the nurse called it) which was fitted onto both the middle straps of his boots to help with any rubbing. And told to give him calpol for the sores but to try and keep his boots on as much as possible.
We didn’t have much luck with his boots and bar for the first few weeks as his skin kept breaking down and he ended up with welts on and off and also some very nasty blisters on the heels of his feet. It was heartbreaking to see him in so much pain and also exhausting as no one was getting much sleep (and with a teenager and toddler to also contend with on a daily basis, sleep was needed).
Taking Kyllian out wearing his boots and bar meant we couldn’t have him in his carrycot on the pram as they wouldn’t fit, his bar was too wide, So we had to lay his pram flat and have him in there until he was big enough to sit up. We also got whispers and stares whilst out with him, people asking how he hurt or broke his legs. Also putting him in his carseat with his boots and bar on caused some challenges bit we worked round them by taking his bar off to fit him into his seat and then putting it back on once he was in his car seat.
After one particularly bad blister on his left heel the doctors decided to recast his right foot so to give his left foot a rest from the boots and heal over properly. We were back and forth from the hospital daily to have his left heel cleaned and re-dressed by the nurses (by this time we were on first name terms and they always made such a fuss of Kyllian which cheered him up no end) we found that mepliex boarder and granuflex helped brilliantly and so the doctor put it on a repeat prescription for Kyllian as the doctor advised he has very sensitive skin on his feet and the sores will continue to occur. We still use this any time his feet get sore to this day.
After 2 weeks of being back in cast his heel was looking good again so we had his cast taken off and his boots put back on. This time his heels and ankles were cushioned with the granuflex first then his socks and then his boots with the Pringles. This worked well but he was still unsettled especially at nights so we asked the doctor is we could try a Dobbs bar which his shoes fitted to just as the ponsetti bar had but the Dobbs bar has joints in to allow some more freedom of movements. Unfortunately Kyllian was extremely distressed when using the Dobbs bar so we went back to using the ponsetti bar after a few days.
Once we managed to get the right dressings for his feet and ankles and he got used to having his boots and bar he was alot happier. We even managed to get him some lovely accessories from taz at bar bumpers (link to the facebook group is below) to make his boots and bar personalised and much more trendy and to keep his toes warm in the cold weather. He wore his boots everyday for 23 hours a day with one hour out for a bath and a wiggle on the play mat until he ‘graduated’ to part time wear after a further 12 weeks.