Friday 30/09 – Lister Bramble ward bloods

Over an hour to wait to get bloods taken at hospital. In total we were there 2 hours!! Ridiculous considering we had a booked appointment.

Saturday 1/10

Woke to 4 answer machine messages on landline. 111 Doctor trying to get hold of us as William’s test results came back abnormal from the lab. Apparently knocking on our door at 12.30am (wrong house – had our old address)

So I phoned 111 & was called back by a doctor & told he had potassium level 9 blood result – please go to a&e now for retest. Shitting myself again.

Ok, off we went with Matt and Phoebe and swimming bag in car as thought we’d continue our day after some quick tests. It’s 8.30am.

No no! Got seen straight away, vitals all checked out ok so given room in children’s AMU then waited 4 hours to see the doctor as they were ‘running behind’!!!

Blood samples took one doc 25 mins before she gave up finding a vein, doc 2 came in and jabbed away at arm but couldn’t get vein. Finally she put freeze spray on his foot and dug around to get sample. He yelled and screamed – my poor boy.

Sample came back 3 hours later as inconclusive so again they had to take blood. Next foot this time, more freeze spray and more yelling from our boy who was so so brave and amazing through the tears.

Only waited 15 mins for initial results and he was fine. We could go home at 4.45pm!!!

All that for rubbishy taken bloods from trained doctors causing the cells to break up and results to be altered.

Not a happy mum and will be having words next time blood is required.

Monday 3/10

Call from GP – problem with bloods. I explain our ordeal over weekend. She calls paediatric and calls back. Liver function test high.

We have to retest ASAP!

Tuesday 4/10

Call hospital all day to book bloods appointment – don’t get through.

Wednesday 5/10

Finally!!!! Get through to hospital and speak to nice nurse. Explain what’s happened and they book us in for that afternoon.

Arrive and book in and straight away nice nurse takes us through. Although they get some from left hand, she has to redo left arm to get good sample. William cried a little but was such a fab little boy! Phoebe watched from the buggy!

Thursday 6/10

Call from on call GP – as William’s one doesn’t work fulltime. Liver results raised. She’s referred it to paediatrics at Lister hospital, he has to go in for scans and goodness knows what . So, I wait for a phone call….on my own at home feeling like crying my heart out, again!

Feeling tired of this, sick, fed up and hating a lot of people right now!

I ask her to speak to our contact at GOSH about all the results.

My contact at GOSH calls at 4.25pm, William is fine (except for the obvious)! Results are all linked to DMD, we shouldn’t have gone through the past 6 days of tests and hospital visits and heartache. He’s going to chat to the GP.

My emotions are all over the place; finally I can relax after one hell of a week, but I’m so so angry with the professionals for putting my boy and us through that.

It really does have to be me in charge now, not the ‘professionals’.