Setbacks and dancing!

This morning didn't start well. Overnight Lyall was started on a very strong antibiotic which will hopefully stop the infection. The infection has continued and Lyall is still having high heart rates, high temps,wheezy, secretions. We are still very concerned and worried. Unsurprisingly  it was decided that Lyall wasn't ready to go to theatre to be woken up and taken off the vent. We had a long chat with the surgeon who was lovely but keen to give Lyall chance to get over the infection. He wanted to trial taking him off the drug which is paralysing him so that he would start moving a bit and coughing his secretions.

This did send a few panic waves through the staff who know him well and remember how many times he used to self extubate when he was on PICU 4 years ago. As well as a vent tube he has a cannula in each hand and a central line in his groin all of which are easily removed by a determined little boy with a very strong grip! So the cannulas were bandaged up and the central line covered with a sheet and the drug was switched off.

Things were calm with him taking the odd spontaneous breath, the occasional twitch of his shoulder but nothing too alarming. He did some really good coughs during physio and chewed on the catheter when his mouth was being suctioned.Max came in to see him and Lyall remained calm. However about 10 minutes after Max and Sharron left I was sitting with my head resting on the edge of his cot stroking his head when suddenly his legs began to twitch. Within seconds he had kicked off his sheet and his hands went straight for the vent tube. I grabbed them before he could pull and he opened his eyes and looked at me as if to say " you're spoiling my plan". He continued to wriggle and open and close his eyes. Whilst I was concerned about his tubes it was absolutely lovely to see him dancing round the bed showing us that his fighting spirit is most definitely alive and kicking. I stroked his head and told him to close his eyes and go back to sleep which he did.

Meanwhile the nurse had set up a new infusion of the drug just in case it was decided it was safer to paralyse him again. He stayed calm until Sharron left although his heart rate was beginning to go up.

We've just spoken to his nurse who has had to put him back on paralysis as he has had another dance around the bed and gone straight for his tube. Whilst it's sad to think he can't move it does mean we aren't worrying that he will pull his tube out overnight when it would all be more complicated.

So here's hoping that he continues to fight his infection and by Thursday he will be well enough to be woken up properly so we can see if it's worked.