Happy Surgical Anniversary my boy

A month ago I wrote about the Dude’s spinal surgery and the impact it has made. It says everything that the first thing I wanted to write about in October was the same surgery. It genuinely blows my mind that this was only a year ago. A whole year since Mr V and I handed our boy over to his two surgeons, and one of the lovely surgical team gently squeezed my shoulder and promised to take the very best care of him (until that point I had managed to hold it together. It will come as no surprise to anyone, dear Reader, that I crumbled at that point).

A day in theatre. Three days to fully bring him out of the anaesthetic/sedation. Six months to fully heal the wound.

And it was absolutely worth it.

So many other parents are in the same situation we were in a year ago. Although there are different forms of scoliosis, neuromuscular scoliosis tends to be progressive. Meaning that when you have a child like mine the prospect of this surgery hangs over you like the Sword of Damacles.

We learnt a lot in the months running up to surgery. The processes of preparing us and the Dude for the operation actually began 6 months earlier; as he’s blended diet fed we put a plan in place with dietetics and his surgeons to ensure that he could have his blended diet via his PEG as normal as soon as he was able to have feeds again.

Yes, even in PICU (we made his feeds at home and fed him ourselves).

We had a plan with his consultants to admit him to the ward two weeks prior to surgery for intensive IV antibiotics and physiotherapy, to ensure that his lungs were healthy as they possibly could be before he underwent surgery.

And we liaised between teams at our local children’s hospital and Alder Hey to ensure that his VNS was switched off at the point where he went into theatre, and was switched back on as soon as he was out again.

If I could share any words of wisdom with other parents facing the same surgery it would be this; have faith in your child and their medical team. Hearing the possible complications absolutely terrified me, but the Dude was absolutely clear that he WANTED this surgery.

We knew that it was the right time. And since surgery my amazing son has just gone from strength to strength. Sending love and hope to all who need it.