Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
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It’s no secret that waiting on a surgery date can be stressful. Dates are booked weeks to months in advance only to be cancelled at the last minute due to lack of beds, illness etc. Often repeatedly. It’s frustrating, distressing and enormously difficult at the best of times – add in the extras that come with a complex need child and things can really get complicated.
Four weeks ago we got the call that the Dudes spinal surgery was booked in. An already high-risk procedure, this surgery was even more difficult to arrange due to his VNS. Specialist equipment had to be brought in, two surgeons were required and a VNS specialist had to be present to turn his implant off immediately prior to the surgery and then switch it back on again immediately after.
Organising this surgery has been a logistical nightmare. Two weeks ago he was admitted for intensive physiotherapy and IV antibiotics, extended microbiological screening, and a host of pre-op checks to optimise his lung health and get him as ready as possible for the long operation to come.
Waiting for each test result had us holding our breath.
A week in, he caught a virus in hospital; queue daily blood tests to monitor his infection markers. Three days before surgery another test result threw everything into doubt; a weekend of frantic activity ensued with nurses trying to contact surgeons, surgeons contacting microbiologists, and us barely sleeping. With 24 hours to go, we didn’t know if surgery would go ahead, only that surgery would likely carry even higher risks than we’d initially thought.
Unless you’ve lived through something like this, it’s impossible to understand the level of anxiety and strain parents and carers of fragile or complex children experience in these situations. Communication is crucial but is often lacking – not for any reason other than often there are no answers to give. Preparation for this surgery have been 18 months in the making; battling to keep him well enough, to protect his lungs from infection to reduce the risk of further damage while trying to minimise antibiotic use to minimise the risk of resistant infections. We often feel totally lost, the weight of the decisions we have to make for our children weighing heavily on our minds.
At 7am on 24th October we had confirmation that a PICU bed was available; until that point I don’t think any of us quite believed it would go ahead. In just 8 hours, the surgery that we’d waited so long for was completed and our boy was safely back in PICU. Now to start the recovery journey, but that’s for another day.
