To be pissed off with the hospital?

[SinkGirl]

My son, 22 months next week, has had health issues from birth and is currently being investigated for a genetic condition affecting the brain so he had an MRI under general on Wednesday.

I had contacted his general paediatrician before this to make sure that his fasting plan was there and available for staff on the ward as he has an issue caused hypoglycaemia. She mentioned blood tests may be needed after the MRI - I said, since he is becoming increasing scared of needles and we are seeing his endocrinologist soon (who we only see every 6 months), could we do the blood tests while he has the cannula in. She agreed this was a good idea and said she would put in the request.

The cannulation and anaesthetic were horrendous - he was more distressed than I’ve ever seen him, to the point where I’ve had lingering anxiety since. When we got back to the ward, I asked the nurses to take the requested blood samples before removing the cannula but they said there was no request in his notes. They left messages for his consultant but she didn’t get back to them and eventually we went home.

Got a call from a nurse this morning saying that he was supposed to have blood tests on Wednesday - I said I know, I asked the nurses about them but they weren’t in his notes. She told me they are in his notes, in the paper file and on the digital system.

So either the nursing staff on the day didn’t look properly, or they’ve been added since and backdated to try and make it look like someone else’s fault.

Regardless, now my increasingly distressed little boy has to have yet more needles stuck in him and I have to deal with the fallout.

I know they’re very overworked, overloaded etc and I never complain ever, but this sort of thing happens every time he’s admitted or in for something. There’s no communication and either they don’t use the system properly or it’s not fit for purpose.

If it were me I’d just sigh and get on with it but it’s not fair on him to keep having additional suffering and distress because things keep being messed up.

AIBU to expect there to be proper systems in place when it comes to our kids health? I find it really disheartening.

I'm so sorry. My 5 year old has similar health problems and is a nightmare with needles and general anaesthetics. They should have organised it so that he could have his bloods done under GA.

With the bloods are the play specialists involved? I found they were really good at helping my little boy. I find his favourite tv programme on YouTube or BBC iPlayer while bloods/ga is being done helps as well.

Thanks Ellie. Normally the iPad helps but it’s gotten to the stage now where as soon as they grab and hold his arm still he becomes absolutely hysterical. I have to do finger and toe pricks at home for him and he’s generally fine with those - he just seems like he’s very scared and doesn’t understand in a hospital environment. The cannula was huge though so hopefully with a little paeds needle it won’t be so bad.

He’s had a big regression in recent months, lots of sensory seeking behaviours so I’m unsure if that’s related.

Just frustrated to have to put him through it again when it could have been avoided.

Okay, well we have an appointment now, it’s two weeks away which isn’t so bad I guess - hopefully the residual distress (his and mine) will have faded by then. Still feel bad he has to go through it again though, especially after going out of my way to try and sort things out well in advance.

His ophthalmologist struggled to examine his eyes back in May as he was so distressed (two of us holding him down and the doctor prising his eyes open) and did mention they could examine him while under general anaesthetic - the fact that this didn’t happen doesn’t surprise me in the least, but I thought taking some blood at the same time wouldn’t be too much of an ask!