get it out before she pops 2

[littlemaemae]

Following on from aibu to take dd3 to a&e

Mae has lost confidence in this hospital where no one knows how to treat a small tormented child. Will PALS help, or just protect the status quo ?

Definitely think it's time to get PALS involved. Even if the Dr's really are following the guidelines and doing all they can, the way you are being treated isn't right. It doesn't matter that there are children who are more 'poorly', they will be getting taken care of. It doesn't mean that your dd's pain is less. It doesn't mean that her care should be less!

You are doing brilliantly. Hang in there.

I'm worried PALS are going to get to work on a cover up if i speak to them today.
I am not sure if u

Didn't mean to post so soon!
I'm not sure how impartial they are.
I feel like I am losing it and descending into paranoia now.
Will her dp here ASAP and make a plan. Thank you for advice will update in a less crazy way soon xx

Please phone PALS this morning

Might be helpful to write out a quick list of major dates and events in Littlemae's care before you do, so that you have it to hand for reference. Spend a little while thinking about how to describe the ongoing situation in order to convey it as clearly as possible - that will help.

I'd suggest starting with something like:
My 3yo DD is currently a patient at hospital X - she has a history of constipation and has recently been admitted for further investigation. She's been experiencing constipation issues since she was x yo and has not had a bowel movement in 5 weeks.

I am concerned about the suitability of her care, for a number of reasons; the most recent and pressing of these is that her stomach is extremely distended and that she is in a great deal of pain. I feel that she needs more urgent treatment, as the current pace is simply too slow and she is suffering under it.

I'm not a doctor but hopefully the above is a good base to start from in your PALS conversation.

Keep telling them how many days this has been goingon for
Keep asking them what the plan is
Keep.telling them.she is in pain
Hope today has some movement

what do you want to happen? What do you think is the best way forward?

OP, this is hideous. I am so sorry. Wonder how these idiots would feel if they hadn't pooed for five weeks.

Can someone tweet this hospital? The CEO of this hospital or its trust? I suppose the past few weeks' lack of action had to do with 'cost saving measures'. Clearly now, it's not that cost saving, since
Little Mae still had to be admitted and an NG tube fitted and consultants having 'another patient' to deal with.

Keep saying

Chronic constipation
Severe impaction
Severe and constant pain with episodic acute pain 24 7

This isn't just a three day constipation

Surely they can put her under ga today and do some kind d of manual extracting as well as any tests bioppsies ?

Why would the parents trust this hospital to do any further procedures ?

I've had cause to use PALS a couple of times and have found them to be much more on the patients side than the hospital's. I phoned them once as a referral for surgery had been lost, by the afternoon I had an appointment arranged for pre-op tests. Talk to the consultant about your concerns, and contact PALS.

Mae print this thread and the previous out as give you a good timeline and then factually talk, write to pals x

Obviously printing this thread in hospital is impossible but maybe someone close by can. Mae i cant believe its still going in.

I presume DD is passing water ok? If no plan to go to Leicester today I'd be inclined to ring them myself. Or Birmingham Children's. We'd need to find you the right name and number though. Maybe paranoia but if current hospital are aware they may have been negligent providing less than optimal care, they may now be reluctant to involve another hospital and risk getting found out. Some of us spent years developing our dragon mum skills. OP you've done brilliantly in a relatively short time.

You are doing brilliantly in the face of this madness.

I have been having a google about paediatric gastroenterology.

It appears that Sheffield have a gastroenterology centre of excellence.

www.sheffieldchildrens.nhs.uk/centre-of-excellence/more.htm?tab=1

Here is the great ormond street centre

www.gosh.nhs.uk/medical-information-0/clinical-specialties/gastroenterology-information-parents-and-visitors

This doctor works at Sheffield

www.paediatricgastroenterologist.co.uk/index.php/about

If I were you I would ring all these people places and ask their advice.

"I am very very concerned about my daughter...short summary...can you help."

Could you contact your MP.

Could your husband take holiday time off work?

I'm trying not overwhelm you.

If someone could print out Mae's own posts, without replies , that would be by far the most helpful document. No HCP is going to read 2000 comments in a hurry.

I think I would ring as many people as possible until someone was hooked.

Ring pals
MP
Chief executive of hospital you are in
Sheffield
Great ormond st

I'm concerned that you need some support.

Littlemae I am so sorry you are going through this. please get on to pals right from the beginning your dds care has been appalling, as for what nurse has said about the dr being with a "poorly" patient your dd has probably more right to be there then most. im sure you've read about bowel perforation and entercolitis the longer this goes on tbe higher the risk of complication, I thought that they would take your dds distended stomach more seriously at the least.

Also is there such thing as a pain management team for children?

Scroll through your threads or get Dh to and write down everything that has happened or failed to happen and when. Every phone call made or not returned, the Friday discharges with no support the unhelpful nurses etc. PALs will have access to administrators that you don't and can support you. Things do tend to roll along better when pals is involved. Hospitals often have a pals desk at reception

Dp can work home on phone and laptop so pretty mobile if he cancels appointments.
Work will let him have as long as he needs off, they are amazingly supportive. We are SO lucky and count our blessings with that.

We have lots family in that area who we could stay with.
Sheffield is looking like a good option.

I will look into all suggested when I get a moment today.

She couldn't wee last night. It wouldn't come out. But woken up to a wet bed.
I was really scared of perforation. I have never felt anything like that before. And it did start before the klean prep.

She's swollen in the face and looks terrible. Not bright and lively like she usually is.
She can't eat or play today.

Dp will be here very soon. Taking DD to school.

Go and grab a doctor OP. Sod maintaining a relationship with these people. That ship has sailed.

please have a look at the sepsis symptoms as well www.nhs.uk/conditions/Blood-poisoning/Pages/Introduction.aspx