Second surgery - new rods

Two weeks ago Evelyne had another major surgery to remove her old Magec rods and insert new longer rods. Since her first surgery, Evie has been lengthened every 3 months, and reached the end length of her rods sooner than expected. A result of a Beals Syndome catch 22. Whilst the flexibility in the connective tissue is what made Evelyne's spine super bendy in the first place, the flexibility also meant her surgeon could straighten her relatively quickly, thus running out of length.

Leading up to the surgery Evie (and myself) were very anxious. Unfortunately having been through it before meant we were not looking forward to the surgery or aftermath. Anticipating the pain she would be in was the main worry. We distracted ourselves by planning a brilliant 9th birthday party the weekend before. As well as a bit of activity planning, relaxation oils, music downloads and lots of prayer.

The operation was longer than expected, so Jon and I were pleased when the surgeon emerged to tell us it was all over and she was in recovery. He informed us that much to his surprise, the existing screws had come loose in her spine. In his wording, two were extremely loose and one was "swinging in the breeze"! He was surprised that she had not been experiencing associated pain. We had hoped the surgeon would be able to just replace the actual rods, however, he had to remove all 4 screws, with 3 larger diameter screws, whilst having to drill a new hole for the 4th. He was happy that the anchors were now very secure and as a result she won't have the same restrictions as her first surgery. He was also confident that her recovery would be quicker than last time. All in all, very positive news.

The following days in hospital were still painful and long. Long days and nights with frequent repositioning required. Evie also had some issues with pressure injuries this time, but as an OT, I'm glad to be in the right industry to know how to deal with these! We were prepared with movies, music and audio books, and the DVD stand was again a godsend. Overall, everyone was pleased with her progress and she was able to get up and walk earlier than last time. The surgeon was happy with her x-rays, so we left hospital on her birthday with a bit of determination to get out of there! 

Heading home

For the last week Evie and I have stayed in Sydney, at our 'home away from home'. My parents have opened up their home, and in fact partially designed their house with Evelyne's medical appointments and recoveries in mind.  I am so grateful to have this provision, and my mum to look after us! We have enjoyed many hours of colouring, visits from cousins, craft activities, movies, and our now tradition of her first outing to Cold Rock Icecream. It has been a smoother process this time, knowing what the main issues would be. So were well set up with a lowered bed, lots of pillows, shower chair and toilet rails brought from home. 

Today we have finally made the trip home to Bathurst. Dosed up on pain meds and lots of pillows, it is always sad to leave my parents, but will be so good to be home!

Another short-lived cast

On Friday we had Evelyne's cast cut off. It had been on for 5 weeks this time, so I was happy that it was a longer stint than the last one. We had three good weeks after she got used to the new cast. She was happy, independent and enjoyed playing at home and preschool. However over the last week she started complaining of pain. In particular she found sitting in chairs and in her carseat difficult, and she started waking in pain through the night also.

As a result we had the cast cut off locally. It was a very hard decision, as we really wanted this one to last longer. The ordeal of travel, general anaesthetics and xrays mean that the longer a cast can last, the better. However the change in her mood was demonstrating that something was wrong. We found that again there was a pressure sore on the point of her kyphosis. In the same spot as the last one. This sore was slightly wider, but thankfully not as deep as the previous sore. 

It is disappointing, but I am glad that we made the right decision. Leaving it longer would have meant a deeper sore, and a longer time for it to heal without any sort of support. On the positive side, Evelyne is enjoying her 'freedom' and she can now put on her shoes and socks by herself. The sore is healing well and we may even be able to put her brace back on her this week. Plus the first bath in 5 weeks was exciting!

P.S. Milly had her 'cast' cut off too. Evie talked her through the procedure and she was very brave.

Brace shirts

Evelyne has had frequent problems with rubbing from her brace. This has significantly worsened in the new higher design, in particular under her arms. Through a couple of my online contacts, I heard of shirts specially made for under casts and braces. There are different types, one brand called 'knit-rite' which make a cast t-shirt (to be worn under a plaster cast), and another 'the Boston T' or 'the Boston Silver T' (made for boston braces). They reduce perspiration, bacteria, are cooler in summer, and can be changed to reduce smelling and itching. 


I tried to find the shirts online and always hit brick walls. The main being that they would not ship to Australia. In a last attempt to find one I posted a request on an online forum for infantile scoliosis. Success! Within a week I had an offer to post some to me from the US and not long after they arrived. The shirts we got sent are the Boston Silver T and are specifically designed for a brace. They even have flaps under the arms to reduce rubbing in that area. They have made a phenomenal difference to Evelyne's comfort levels. She is kept cooler, less sweaty and smelly, and most importantly - no sores under the arms or on her spine!


Here is a picture of her showing off her new singlet.

Reflux and pressure sores

Unfortunately, there are many 'side effects' of having a brace or cast on.

Two we are dealing with daily are reflux and pressure sores.

Both my kids had reflux as babies, Samuel took until he was 4 to grow out of his and wean him off his medication. Evelyne's reflux was not as severe as a baby, and it wasn't until we applied the cast that it became much worse and medication was needed. The tightness of the casts and braces squeeze and put pressure on the tummy and can cause the contents to be pushed back into the oesophagus. It is also uncomfortable to eat big meals and I've heard others with spinal braces as teenagers recommend smaller, more frequent meals. At the moment Evelynes reflux is managed with medication, leaving more time between meals and bed, and avoiding some foods close to bedtime.

Pressure sores are also reasonably common on the bony prominences of the kyphosis of the spine (the hump), and sometimes on the hips where the brace or cast sits. Evelyne has a constant red area on her back which occasionally breaks open and requires something like duoderm to dress it. Fortunately in a brace, you can check it and dress it if needed, in a cast often sores are open and remain untreated. In the picture you can see the gel dressing with a groove in it from the brace digging in! (The red area is a birth mark).

Both these issues can be painful for her, but unfortunately, they are the lesser of the two evils. The treatment of her spine and attempting to manage the progression of her scoliosis is more important at this stage. So for now, we attempt to alleviate the symptoms as best we can.