Phil 1 GOSH 0

The boy never ceases to amaze me. Phil went down to surgery at 3pm today to remove the infected permcath (dialysis tube). At 8pm he is dressed, running about, and getting discharged. Right now, he and Chris are watching a Scooby Doo movie in our patient and family accomodation here at Great Ormond Street while munching down on popcorn.

Its almost as if today didn’t happen – an extra early start so that he could do 4 hours’ dialysis and an hour’s antibiotic IV before an operation to remove a plastic tube surgically implanted in his heart.

Truly astonishing.

What is sadly more astonishing is the ability of Great Ormond Street Hospital to make things as difficult and as stressful as possible for child patients and their carers. The consultants were determined to force phil to take a ‘pre-med’ cocktail before anaesthetic, supposedly to calm him. The main ingredient of the cocktail is a drug called medazalan, which has previously had a disturbing and powerfully psychotic effect on Phil.

It took a row between us and the consultants outside the cubicle of a hungry nil-by-mouth Phil – who was admirably trying to relax himself prior to his operation – and the support of the anaesthetist for the consultants to back down. At one point the lead consultant – who has had no interaction with Phil to date – angrily accused Anne of ‘not sticking to the agreed, written plan’. We had to point out that the plan included the no-pre med option we had discussed with the anaesthetist last week, and had a number of glaring errors in it eg failing to list the critical immunosuppressant Phil has to start taking immediately to act against his antibodies prior to the transplant.

In the end we were right not to allow him to be drugged unnecessarily. He was calm and collected in the anaesthetic room, winning the admiration and praise of the whole team.

The motto of Great Ormond Street is: “The child first and always”. Sadly we have seen more than once how some doctors are too arrogant to listen to children and their carers, putting persona dogma ahead of the best interests of children.

It is time this venerable British institution suffered a major shake-up.

Phase 1 underway…

Phil and Anne have just left the flat for Great Ormond Street Hospital for the start of a long day. 

Phil is about to have 4 hours of dialysis followed by an hour of vancomycin IV then he goes into surgery for operation number 1. He is having the permcath – the dialysis line that goes into his heart – removed in advance of the transplant because of an infection he picked up earlier this week.

In a few hours’ time, I will be checking into the patient accommodation at the hospital, where we will all be staying for 6 weeks after Phil and I have been discharged. Chris is going to help me finish packing this morning. One of myself or Anne will take Chris to his temporary new family tomorrow.

Once Phil has the permcath taken out, there is truly no going back!