While emergency department consultants may come and go, when your child is attended to by one who helped to bring him back when “we were losing him”, it brings a level of confidence that allows us to trust again in the treatment Samuel receives.
But what a pain to be readmitted! Seven months after discharge (after our 480 day stay) without illness then, BANG – influenza A as it turns out.
Two registrars (unknowing of Samuel’s story) escorted us from the ED on level one to the Paediatric Intensive Care Unit (PICU) on level four. On exiting the large staff elevator, the two doctors could barely keep up as Samuel sped off to his allocated area of PICU – he knew where he was going and wanted to get there. He needed “cough assist”.
Because natural coughing just isn’t possible, different physiotherapies are routinely required to clear lung secretions including suctioning, chest physiotherapy and the “cough assist” – a machine which cycles through a round of positive air pressure (inspiratory) breaths with a final negative air pressure (expiratory) breath to bring up the bad stuff from the airways.
Great in theory. But when things get difficult (Influenza A) then the delicate balance of ventilator pressures becomes precarious. And negative (coughing) air pressures can contribute to collapses – beginning with the lower lobes of the lungs.
Collapse? Yeah – you lose PEEP. That’s “Positive End Expiratory Pressure” – the air pressure that keeps lungs up. The stuff that gets knocked out when you’re winded. So, just imagine you can’t move, you’ve just been punched (and winded) and are lying down with a heavy dumbbell on your chest and trying to breathe through a straw.
Welcome to Samuel’s world of lung collapse and without judicious ventilator pressure adjustments by doctors, it becomes incredibly traumatic and distressing for Samuel.
To get his lungs fully re-recruited (inflated) has required connection to a PICU ventilator – a “Servo U” – which is more accurate than our Trilogy unit in its measurements of pressures and “tidal volumes” (breaths) but being the size of a small bar fridge is very decidedly not portable.
Lung re-recruitment is also more successful with body positioning especially being back in his wheelchair. But how this is all done when his mobility is determined by the length of the life support tubing connecting Samuel to the machine makes it very difficult. As he was for a significant time during his first admission, he is well and truly “trussed again” – tied down to that which he must have.
But is he in the best location he should be for the medical intervention he requires? Absolutely.
Do we all want to be home together as soon as? Absolutely.
And has he stayed as strong as he can, and fighting all the way to get well?
You all know the answer.
Until next time.
This blog is my personal account and reflections of parts of our journey and do not necessarily represent the views of the Campaign for Samuel Inc. Association. Some personally identifying features of persons portrayed have been de-identified for confidentiality. Acknowledgement is made of the ongoing professionalism of staff of Queensland Health and the Lady Cilento Children’s Hospital.