3 days post operation

We are 3 days post op. The operation itself lasted around 3.5 hours. It was difficult being there as 1 parent and without Simon as we usually share everything. It’s pretty tough seeing your child go under general anaesthetic, particularly when they’re petrified of the surgery. Although Ava’s has many operations and GAs it does not get easier for her or us.You then have to wait around the ward for surgery to be completed and for them to come round. Anyhow that’s over with for now.

There are more incisions on Ava’s leg than I thought. A large one on her hip which was used by the surgeon to drill a hole into the top of her femur which he then used to core out the centre of her bone. This is where the magnetic metal rod has been placed. There are a further 3 incisions - one where nails have been inserted which are attached to the rod, another to break the leg and one near the bottom of her thigh.

Ava is on strong painkillers and seems to be coping ok with the pain so far. We’ve had a few moments where she’s been in more pain but this eases if she doesn’t move too much. She has managed to get up on crutches but not for long as it tends to tire her out and she’s quite uncomfortable.

She’s a bit teary but I think this is more frustration than pain and is something that we’re used to as it tends to happen post surgery while Ava gets used to everything. At present she needs help washing, dressing and going to the loo - particularly as there are wounds all down the leg and quite a large one by the side of her bum. This may change once she is stronger and more comfortable. 

She will have to wear a leg and knee brace for the duration of the procedure which is to ensure she doesn’t dislocate her knee which can happen during lengthening. It’s something we really need to avoid as it will set back the treatment considerably. Ava also has quite a lot of physio that she needs to perform twice a day. The exercises last around 30 mins and involve various stretches of calf and thigh muscles. At present because of the surgery and the painkillers she is struggling to complete them all but hopefully the tiredness subsides soon as it’s really important that her muscles remain flexible during the process. 

The lengthening starts on Wednesday and we will be looking at 2/3 millimetre a day. The movement will happen twice a day via the large magnetic device. I’ll post again once this has started.