Surgery!

So, as promised, here I am with details of Joni's surgery. You might recall that we were shocked recently with the news that Joni-Mai would be needing a hip replacement. Last Thursday, we had the chance to sit down and discuss with Chris Henry - a specialist sarcoma nurse - the surgery, procedures and implications on Joni-Mai's life.

I will put everything I think relevant to the readers and friends and family in a bullet point list. It makes it easier for me and for you to understand. I will also include some of the questions we asked, so you know exactly what was said.

• How long is the operation?

The operation itself will only take an hour and a half (estimated) but she will be in theatre for about 4 hours. This includes opening Joni-Mai up and stitching her back together after the operation.

• How long is recovery?

Joni-Mai will have to spend 6 weeks in either a hip brace or a hip spica to help set her new hip. It is believed - due to her age and size - that she will need to have a hip spica. Recovery after removal of hip spica depends on Joni-Mai. If she is willing to participate in physiotherapy sessions, she will recover quickly. If she isn't so willing, it will take longer for her to get better with movement and maneuvering with her new hip.

• How will replacing the ball part of the joint affect the socket part of the joint?

In the immediate future, there will be very little - if any - noticeable difference on the wear on the socket. Because she is so young and her bones are still growing and developing, there is nothing that they can do to protect the socket without damaging it further. In time, when she is older, she may be able to have surgery to place something in the socket to protect it. At the moment, the only thing that could happen would be for the ball part to pop out of place - which would cause some discomfort - but in time, there are things that could be done to minimise this happening. For now, Joni-Mai has to get used to using her new hip as naturally as possible.

• How will the new hip affect maneuvering things like stairs?

To begin with, she may be wary of things like stairs but, with practise, she will manage them just fine. She is determined enough to get on so she will be just fine. Physio will teach her how to use stairs in a way that she finds comfortable and as time progresses, she will do them as she always has done. She may walk with a slight limp but this is unavoidable.

• What kind of growth mechanism will Joni-Mai have in her prosthetic bone?

Because of the size of the bone in Joni-Mai's leg, it is likely that she will have an invasive growth mechanism - whereby, to lengthen the bone as she grows, she will need to go into surgery and have it lengthened by an alan key mechanism - as opposed to a non invasive growth mechanism. Joni-Mai can, in time, have her hip replacement replaced with a non invasive mechanism, this will mean taking away everything that is in there already and replacing the whole lot. This is possible and will mean more intense surgery but in the long term it will probably be more beneficial for her to do this.

• Will repeated surgery cause damage to the remaining bone?

In the short term, no. In the long term, possibly. But as we age, science and technology progress so we might be able to do something before anything occurs.

So, as you can see, we have a long term issue but, it is better than any other alternative. Joni-Mai will only get about 5CM of growth from the new bone they are putting in, so we expect to be back in to replace the head in about 18 months time. This means more surgery but we will deal with this when it occurs. In the long term, Joni-Mai isn't allowed to play on bouncy castles or trampolines. This is indefinitely. Joni-Mai will also not be allowed to play contact or high impact sports. We are to discourage any ideas of ice skating and if she wants to take up horse riding as she gets older, we will have to go into discussion about it.

In short, she's going to have a restricted childhood - in my mind - but it is in her best interest. I'm sure there are things I have missed and if there's anything you want to know, please leave a comment and I will get back to you!

Mummy Stevens x