Coping, Pin Site Cleaning and Correction Begins

Over the past few days Ava has had time with the physio and has learned to use her crutches. These can be used to get around the house but for longer journeys we have a wheelchair. She is coping remarkably well though. She does have moments when she feels down and frustrated but on the whole she is being positive. Hopefully this isn’t short lived as the correction of the foot hasn’t begun yet.

We have also had the first pin site cleaning. This is something that we have to do weekly to surgically clean all the open wounds into Ava’s leg and foot. There are 14 in total and doing this will help minimise risk of infection in the wounds while the frame is on. Having an infection can hamper the treatment so it’s important this is performed with sterile medical equipment which the hospital provide you with when you are discharged. I’ll have a prescription to get extra supplies from the GP as and when I need it. Ava didn’t even flinch when this was being performed - a slightly different reaction to when she was 6 when she used to scream non stop.

The re positioning of Ava’s foot begins tomorrow, which is the hard part!  The surgery itself was not to do any correction of the foot or bones, it’s to break the bones themselves and to put the frame on. The correction needs to be done by us at home by following a bespoke programme compiled by the consultant based upon X-rays of Ava’s foot (see picture below).  Unfortunately this is a very slow process and has to be done gradually so as not to damage any nerves, tendons or blood vessels in that region or most importantly to cause too much pain. To be honest this really is the painful part as each day by performing the various twists on the frame we are moving broken bones further apart and into different positions. We also need to keep an eye on Ava’s skin surrounding the area as it is stretched as the foot moves position too.

It’s during this correction stage (which will last between 3 - 6 weeks) where Ava needs to be really brave and where we visit the hospital weekly for X-rays and chats with the consultant to determine progress and whether we should slow down further.

As Ava has been able to move on her crutches and is relatively comfortable with her painkillers, we have thankfully been discharged early. I know Ava is looking forward to sleeping in her own bed tonight. 

Operation Complete - The Frame Is On

The operation has happened and the frame is now on. The surgery lasted 6 hours so was quite intense. This is due to the sheer number of bones in the foot so any surgery here is complicated.

The surgeon has broken the bottom of Ava’s leg and broken all the bones across her foot. The various wires from the frame are attached to these bones and we begin the process of moving their alignment on Saturday. 

Ava is very spaced out as didn’t return from surgery until 6.30pm. She is also on a self administered morphine drip so is topping herself up regularly (children’s dose!) which is obviously making her very sleepy.

A few people have asked why the operation/procedure is being performed. To put it simply if we had left Ava’s leg and foot and performed no surgery she would be in a wheelchair for life, with a very visible deformity too. It would be impossible to walk with a 12 cm leg length difference (which is the difference predicted by the consultant at skeletal maturity) let alone the fusing of bones in her foot.

Years ago before the illzarov frame people would have been given the option to amputate but that would be such an incredibly difficult decision for any parent to make for their child. In some cases today that is still the only option for parents.

Thankfully we can go down the surgery route, even if it is a long drawn out process that is painful for Ava. We know looking back  she will thank us for this.

So tonight is all about Ava resting and being comfortable. Hopefully we all get a few hours sleep as it’s been a long and emotional day. 

Hello. It’s been 6 years since Ava’s last illzarov frame which corrected her leg length deficiency by 6cm, and since my last blogpost. Obviously Ava has grown during this time and the difference is now at 4cm. We have decided to delay the next leg lengthening for a year and focus instead on her foot correction.

Ava hasn’t had much surgery over the past 6 years, the exception being a small operation last year to insert a metal plate in her knee to correct the alignment. This was performed as an outpatient and Ava was back on her feet within 2 weeks. 

Unfortunately we are now facing our next major procedure which is to correct the alignment of her ankle and heel (which are currently fused) and the positioning of her foot.

We are now 3 days pre operation and Ava is understandably very nervous and very aware as she’s now 12 years old. The operation will take around 4/5 hours and during that time her foot will be broken in several places and an illzarov frame will be attached with wires connected from the outside to inside of her foot (similar process to the leg lengthening).

An illzarov frame  looks like a form of medieval torture but it is the best way to correct complex deformities in bones as it’s a gradual process that puts less pressure on the various blood vessels, nerves and tendons surrounding the area. The aim of the frame is to move her ankle, heel and foot into a better position - 1mm per day. We have been told the frame will be on for 4 months, followed by 2 months in plaster casts. Ava will not be weight bearing during that time so unfortunately for her no walking, running, swimming or dance classes until January 2020. 

It feels a bit surreal at the moment for all of us but I’m sure on Monday once we arrive at the hospital things will hit home. Ava will be in hospital for around 10 days and we’ll be staying with her throughout (alternating sleeping there each night). I’ll update more post surgery but have included some before operation images.