Anna is safely tucked up in bed at Edinburgh Sick Kids hospital tonight ready for her spinal fusion surgery tomorrow. She will have two metal rods inserted into her back to straighten her spine which will help relieve the pressure on one side of her lungs and also improve her posture and sitting balance. They will probably have to use a bit of additional bone and maybe even cement to strengthen any particular weak areas. It’s a major operation with significant risks but we all agree that the potential benefits to Anna are great enough to outweigh these risks.
Anna was in sick kids all day on Tuesday for pre-admission. There were various tests (Covid 19, bloods) and procedures (ultrasound to check veins for a line post surgery) and we met the team who would be looking after her throughout all of this – anaesthetists, physiotherapists, occupational therapists, surgeons, ward staff… It will take a lot of people to get her through this successfully but as always we know she’s in the best place possible.
At the same time she will have her final intrathecal dose of spinraza. The fusion will close up future intrathecal access. We have to hope that oral substitutes will become available in the near future. That in itself was part of the difficult decision making process as it was such a hard battle to get access to spinraza in the first place.
Although we had assumed that she would have spinal fusion surgery in her early teens, we have had quite mixed messages over the last 12 months about whether this would be suitable for her or not. We finally came to a decision to go ahead with it just before lockdown when of course all elective surgery was postponed but then 3 weeks ago got a call saying surgery would be on Thursday 18th of June.
It’s planned that she will go to theatre around 8:30 am tomorrow morning. It’s likely she will be in until around teatime. Before they can even start the procedure there is a lot of work in positioning her, checking anaesthetic levels et cetera. After surgery she will go to ITU for the night and most likely be on a ventilator until they are happy that she’s breathing by herself. They will probably allow her to wake on Friday, all going well, and then be moved back to the ward where she will stay for possibly 1 to 2 weeks. That’s the plan but of course it could all be completely different.
I’ll keep you updated.
anna's blog 
Thank you Ann Marie for such a clear explanation of what is going to happen tomorrow and what we hope will be achieved. I’m glad Anna is so positive about it all. An improvement in her lung function will be a real bonus. There will be a lot of hard physiotherapy work for Anna as she recovers. You are going to be even busier than ever.
Good luck! Our 12 year old son (SMA 2) had his spinal fusion in September. Hold on tight over the next few weeks . We are pretty much back to (a new) normal now. Take care, and hope it all goes well.
Thanks. Always good to hear from someone who is further ahead than us.
Goodness, what a big day for Anna and you all. Sending love and prayers for everything to go to plan and for a good recovery. Xx
You will all be in my thoughts and prayers. I know there will be a long road ahead and I hope all goes well.
Wow!! An inspirational and heartwarming story. I shall be thinking of you all and praying everything runs smoothly. Best of luck!
Thank you for the update Ann Marie. We are thinking of you all and send our love, prayers and every good wish to Anna.
From all the Mc Auley family xxx