Tuesday, 11 July 2017

Spinal Lengthenings ..... and an update

One of the major benefits of Magec rods is the fact that they can be lengthened externally. Each rod has a small motor that is activated magnetically via remote control and will expand the rod to a predetermined length. This means that the rods can lengthened to suit the amount she's growing, as well as the surgeon being able to lengthen one side more than the other to gradually correct the spine.

Evelyne has been having lengthenings every 3 months since the rods were placed in January 2016.
Whilst it is so much better than surgery, it is still painful. The first lengthening was especially painful. Possibly due to the length of time since surgery, possibly due to recent bone work and bone grafts, possibly her spine may have been starting to fuse in places. Yet again we weren't prepared for it to be painful. I had been told by other parents that lengthenings were pain free, but unfortunately this was not our experience. Each time the pain has lessened, and now we give her pain medication before we go.

Today was Evelyne's 6th lengthening. To our surprise, it turns out today was the last lengthening for this set of rods. As she was so small when her surgeon first inserted the rods, he was only able to fit the smaller length in. We had thought we had a bit more time before the next surgery, but it is now to be scheduled for September. The good news is, the doctor anticipates that he will be able to keep the current screws in place and just replace the rods to the longer version. This will result in a slightly shorter surgery, and hopefully shorter recovery.

A few tears from Evie today as she thought of another surgery. Last time we saw the surgeon and he mentioned another surgery soon, I said "I only just got over the last one!" To which Evie replied "I still haven't gotten over it!

I was recently reminded of a previous blog post of mine Dealing with disappointment. Whilst some appointments and parts of this journey are disappointing, it is good to remind myself how far she's come since 2011, as well as remind myself that God is indeed in control, and find comfort in that.

A painting Evie made for her doctor today. He affectionately calls her "E.B"

Sunday, 15 January 2017

A year on with MAGEC rods - A 'work in progress'

It's been a year since Evelyne's surgery and over a year since I last posted. So much has happened last year. Thank you to those who have sent messages asking about her progress. Some of this was written 12 months ago and has been sitting in my drafts.

Magec Rods (MAGnetic Expansion Control)

On January 7th 2016 Evelyne had surgery to implant magec growing rods. We had been awaiting this day for years and the time finally arrived.  Surgery was discussed as the next option in May 2011, but I sought out a new specialist with new options such as Mehta casting who encouraged us to wait as long as possible before operating. Waiting the extra 5 years not only gave her body valuable time to grow, but it allowed us to have access to the amazing technology of Magec Rods. They have a small motor in each rod which is activated via an external remote control. This enables the surgeon to lengthen the rods as Evelyne grows without re-operating each time. Dramatically reducing complications associated with frequent surgeries as required with traditional growing rods.


Leading up to the surgery we were all nervous wrecks. I had little sleep before and so many doomsday scenarios ran through my head. But Evelyne was so brave going in, and then we had to wait.
4.5 hours later her surgeon came out and told us he was finished. He was happy with the final results but reported that it had been "tricky". The kyphosis hump had become quite rigid (a negative side effect of waiting longer) and he had to chip some parts of the bone to get it straighter.  Also, once in place, when beginning to stretch the rods, one of the screws started to come out of the vertebrae.  A bone graft and a few extra secures later and he was confident in the end result. He informed us that he saw her as a "work in progress", with this surgery being a stepping stone in the process of straightening her spine over the years to come.

I wasn't prepared for the pain she would be in post-surgery. It was so hard to see her lying there and I was completely powerless to help. I probably hadn't prepared her for it either. It will be hard to forget the look in her eyes when she looked at me and said "Mummy, you said 'a bit' of pain". It was a long week. 
We made the most of movies on the ipad to pass the time. Another mum I have 'met' via facebook, has written some really helpful things down on preparation for hospital in her blog post.
A major milestone was walking again on day 4. With the main motivation being using a toilet rather than a bed pan. Then on day 8 we left the hospital to spend another week at my parents place before the longer trip home to Bathurst 2 weeks after the operation. 

Other things we had to put in place post surgery 
- A bed lower to the ground. 
- Sleeping in our room for the first few weeks as she needed help to move in the night
- Help on the toilet
- Pillows. Lots of pillows. In the car, on chairs, in bed.

Longer term recovery
Again, I wasn't prepared for how long it would take Evelyne to recover. I had thought about the short term, but not the long term implications. 
She returned to school for the start of the new school year, 3 weeks after surgery. However she was still on strong pain medication, and would fatigue very quickly. Due to the bone graft, she also had added restrictions in the classroom and playground. We put in an application for additional funding at school and were fortunate to be provided with a full time aide Deb (pictured right). Amazing grandparents also spent 2-3 days per week with us for the entire Term 1, so I could continue to work. 
By term 2 she was off pain medication, we no longer needed our parents help through the week, but she was still reliant on her aide and her wheelchair for school.

Wrapping up the year
Now this all seems like a distant memory. Although she still has restrictions, occasional pains, discomfort and fatigue. By the end of 2016 Evelyne was able to participate in some of her school athletics carnival, was a star on stage singing and dancing at her school talent quest, and won an end of year academic achievement award. She's pretty special.