Sticking points to come…

I can tell that Anne could have a couple of fights on her hand on Tuesday.

They will almost certainly try again to force Phil to take a pre-anaesthetic ‘sedative’. The problem with it is that it can have psychotic side-effects. And on each occasion Phil has had it, it has horribly violent psychotic effects on him, including him having terrifying hallucinations. We successfully put our foot down for yesterday’s operation, and Phil was wonderfully calm and relaxed going into the operation and anaesthetic room, proving there was no need for it – much less any justification for provoking such appalling suffering on our son.

I am also fearful there may be a renewed battle over Anne’s presence in the recovery room when Phil is coming round. Initially Great Ormond Street rules it out. After persisting, and with the support of a Member of Parliament (and recovery room staff), they relented and agreed she could be there to reassure him as soon as he starts waking up. However the consultants on duty next week are different ones, and I am sure Anne will find herself having to fight this one all over again.

Why does Great Ormond Street persist in trying to hinder rather than help, and make what is already a stressful situation unnecessarily distressing for children and families?

‘The child first and always’, reads the GOSH motto. No. ‘Doctor knows best always’, it seems.

Goodbye Chris

We’ve moved into the hospital’s family accommodation. I brought over the last few bits from our London flat which we’ll need with us over the next 6 weeks or so.

In a few minutes, I’ll be leaving here with Chris, Phil’s twin brother, to take him to his ‘new family’. He is understandably anxious and upset at having to go away. He is particularly worried at the ‘blackout’ on Tuesday, the day of Phil’s transplant operation, when obviously neither I nor Anne will be able to pick up the phone to him.

He is staying with a wonderful cousin who I know will take very good care of him and keep him occupied and amused the entire time he is away. But it is nevertheless going to be heartbreaking to say goodbye to him, and I know he will find it incredibly hard to be so far away.

The day when we can be all reunited will truly be a joyous one.

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!

We’re ready (The Last Supper)

So we got the results today on the final blood crossmatch between myself and Phil. We have a Go for Tuesday.

We’ve been to the shops to buy some loose fitting clothing for both of us for after the operation: tight trousers and belts are a no-no after abdominal surgery, and we’ve also got zip-up tops as pulling on t-shirts and jumpers won’t be very easy to begin with.

The four of us have come back from a final kickabout in the park and are now busy packing. Phil has his first operation tomorrow, this to remove the dialysis catheter. I’ll be moving into the patient and family accommodation at Great Ormond Street. We’re also packing Chris’ things so that Anne can take him to his ‘new’ family in Bournemouth, where he’ll stay until I’m discharged and well enough to look after him.

There’s a feeling of the ‘last supper’ in the flat this evening. Certainly this will be the last time for a while all four of us will sit down and have a proper meal together.

But I’m hoping the next time we do so, it will be without all the dietary restrictions Phil has had to put up with for so long..!

Looking forward to life after dialysis…

Phil is clearly looking forward to life after dialysis. For the first time since beginning treatment, he and Chris were yesterday joking and pointing at the blood circulating through his tubes and around the machine.

He has found it tough going since starting dialysis last May. Numerous hospital admissions and operations to tackle infections – including pseudomonas (mortality rate 30pc) and peritonitis. The indignity of tubes protruding from various parts of his body, and having to explain them to other children. Spending half of his week in discomfort tied to a machine, unable to move or do anything fun. Not being allowed to swim, play on the beach, do sports.

Yesterday was – we hope – his penultimate session for a while, and there is a definite spring in his step today. It’s almost as if he is looking forward to tomorrow’s operation to remove the dialysis catheter that lies inserted in his heart.

It will be a relief for us all. We know that, after a while, dialysis starts to have a damaging effect on the heart (one of the reasons why the average life expectancy of someone on dialysis is approximately 4 years, although this figure probably masks extremes).

If all goes well, Phil’s new kidney will last about 15 years before he needs to go back through the process of finding a donor organ – and presumably a return to dialysis whilst he waits.

The second transplant will be trickier than the first (which – as a ‘High Risk’ patient – will be no breeze). But we’ll cross that bridge when we come to it…

The Essentials

Phil and I have been loading up our iPods in preparation for next week.

We’re more or less agreed on music selection: Madness, Madredeus, Salif Keita, Bob Marley, and Kraftwerk. Where we differ is on our choice of books and films. He’s going for Scooby Doo and the Beano. I’m leaning more towards West Wing + All the President’s Men.

I think his list is better…

The Final Countdown…

It was always going to be a less-than-perfect birthday celebration yesterday. But getting recalled to the hospital because blood tests revealed a new infection was an unexpected blow. At least we had the morning to open presents at home!

Today we signed the consent forms. We met first thing this morning with a leading member of the transplant surgical team who will perform the operation on Phil. He ran through the plan, possible complications etc. Phil’s also did a final x-ray, and we’ve both just done our final crossmatch blood tests. Our unscheduled trip to the hospital yesterday meant we had a chance to meet with the anaesthetist whilst Phil was hooked up to the IV vancomycin.

Phil will be admitted tomorrow in preparation for the operation he has to have on Friday to remove the dialysis permcath. So tonight and tomorrow morning we will all be packing our respective bags. Anne will go to Bournemouth on Saturday with Chris and spend the night there settling him in with his new family. Phil and I will be together at Great Ormond Street Hospital (GOSH). A driver will take me from GOSH to Guy’s in the early hours of Tuesday for me to do my bit…

We are truly set to go…

No respite..even on his birthday

Just had phone call from the hospital. Problem with Phil’s blood test from yesterday. Looks like a new infection and we have to go to Great Ormond Street.

He’ll need a dose of IV antibiotics and more blood tests, and then surgery in next couple of days to remove infected catheter.

He’s happily playing on his brand new Wii with his brother. Haven’t had the heart to tell him yet…