Lenice has tried to explain it to me, and the best I can say is this:
Dexter's hip bone is growing at the wrong angle.
But, the surgery is two weeks away.
It's looming ever closer, so it's time to write this post.
Dexter's next surgical procedure is a femoral osteotomy.
A section of Dexter's femur bone will need to be cut and re-positioned.
Screws will be inserted in to Dexter's bones, to hold everything in the right place.
Having these screws in his legs, means Dexter will most likely require additional surgery in about twelve months, to have the screws removed.
It will be painful when they operate and it will be painful afterwards.
The pain medication children receive after having this, is morphine.
If children react badly to the morphine, the pain medication is swapped to fentanyl. We won't be letting Dexter anywhere near fentanyl, so he better be strong enough to cope with just morphine!
Every time Dexter has received fentanyl, he has stopped breathing and has required resuscitation. Dexter now wears a red allergy arm bracelet, whenever he is in hospital, to prevent him being given fentanyl. Even with the red allergy bracelet, there is always a worry someone will accidentally give him some.
Once they cut the bone, and re-position it, they will place Dexter in a brace, like the one in this photo. This was taken when the hospital staff were explaining the procedure, and measuring Dexter up for his brace.
For six weeks, Dexter's legs will be held in the one position and this will be both painful and frustrating. The position Dexter will be stuck in, is a 90 degree seated position, so he wont be able to lie on his tummy without a bean bag for support. He probably won't fit in his high chair, so feeding him might prove difficult. He will need the support of pillows, under his legs, when he sleeps. His legs will still be locked in position.
One of the worst things... we won't be able to cuddle him properly. When he gets sore and his muscles spasm and ache, from the cerebral palsy, his most favoured position is curled up alongside Lenice. While he is in the brace, he will suffer from pain, and he won't be able to snuggle.
One big challenge Lenice and Andrew will face, will be trying to stop Dexter from finding a way to get off the bean bag and start moving across the floor. He needs to stay in the seated position, but Dexter will hate having to be still.
After six weeks, they will remove the brace.
And this, they say, is very painful. Dexter's cerebral palsy affected legs will suddenly find themselves in a new position.
His brain will be forced to forget the old position and adapt to a new one.
Parents of children who have experienced this, have warned Lenice to make sure Dexter has extra pain relief.
None of this sounds good.
But, if Dexter does not have the operation, his bone will continue to grow in the wrong direction.
His knees are already knocking together, and he is experiencing pain when he bears weight on his hip.
Dexter's turned in leg is impacting negatively on his ability to use his standing frame, and his walker.
It hurts him.
Dexter needs this operation.
Dexter's operation will be a femoral osteotomy. Osteotomy means to cut the bone, and that... right there, that sounds painful.
There are various reasons why the femur bone is cut. Most commonly it is to "bend" it so that the 'ball' of the femur can sit in the 'socket' of the pelvis better. It can also be performed to achieve "untwisting" of the thigh bone. (Source)
You can see the turning in of Dexter's leg in this photo.
This is heartbreaking. Again.
We hate cerebral palsy.
Luckily, Dexter's brace will come off, just as the weather is getting warm enough for us to get him back in the water. Dexter loves the water! He needs full support, but he loves to splash and kick and move. Hydrotherapy is excellent for him, so... we will take Dexter's shrunken muscles to the pool, as often as we can, to help him build up his strength, again.
The operation is set for the 7th of October.
Dexter's tiniest sister will still be very tiny.
Just like Charlotte, she will spend time in hospital, for Dexter, within her first fortnight. Lenice, Andrew and the new baby will stay at the Randwick Ronald McDonald House, and Dexter's surgery will be done at Sydney Kids.
Charlotte will stay at their house, no doubt worrying about her brother, and preventing herself from sleeping. She does that... when Dexter is in hospital, or not with her, she worries and tries to stay awake until she sees him, again.
That little girl just knows.
Dexter's casts from the first attempt
Read more about Infant Hip Dysplasia
Dexter's Cerebral Palsy Classification
A Dexter Day
Today, I just want to be a Mum
My Sister Knows (I have cerebral palsy)
For my Sister
Return to Home page
Return to Blog
Visit the Doing it for Dexter Blog