get it out! thread 3

[littlemaemae]

I have moved this to child health board as I don't think aibu is appropriate anymore.
What began as a quick question has become 2 now 3
The support on these threads has highlighted the best qualities of mumsnet and I am so grateful to every lovely person who has supported me so far!

Mini must have named nurse. Have you had a chat with her and said you are unclear about what the plan is and want to understand the decisions that have been made up until now? She'd note that in the records.

You write down all your questions and raise them on ward round in the morning to the consultant. And, keep talking until you have got some answers.

The medics won't be trying to hide anything from you, but, I have often been worried and sleep deprived in hospital with a mini-tunnocks. It's a rough place to be.

My 7year old has needed loads kleenprep over the years.
There will be no lumps of stuck poo. She should eventually got from brown water to almost clear water.
She needs biopsies of her GI tract to rule out hirsxhsprungs.
Kleenprep prep would work.in hirsvchsprungs
My daughter has motility issue in her bowel not due to a ganglion cell issue is not hirsxhsprungs but fibrosis due to inflammation.

Again popping in to say I'm still with you, littlemaemae. I don't post much, but ... like so many other posters ... am thinking of your little daughter, you and your family, and I pop in to the thread throughout each day.

"And that she was 'distressed' from the whole ordeal."

I will hope that the doctor actually meant that she (the doctor) was recognising that your daughter's body was physically distressed, rather than it being a case of the doctor minimising how ill minimae is.

You are doing a fantastic job, littlemaemae, you're a warrior!

Just wanted to drop in again and send you some
Weekends in hospital are the worse.

Can't believe you are being treated like this. I really, really hope this gets better asap

FGS , how bad does this little girl have to get before some doctor does something!

6 weeks since the last poo , God only knows how many unpleasant and painful procedures , in and out of hospital, poked and prodded !!!! Is it little wonder she is distressed

You have done well Littlemae to cope so far ( seemingly on your own) . Is there no member of your family or a friend who can back you in your fight .

No child should be suffering like this .

I'm sorry littlemae it really is not good enough is it ? Surely you could go and talk to pals they help with inpatients they're not just there for complaints after the event. It will not make them think badly but it will get you noticed.

Mae, I'm so sorry. Poor little thing. I really hoped she'd be clear by now, so heaven knows how you're feeling.

Oh poor little one. I don't even know what to say. The whole thing is just horrific. You're doing really well though op

I also hope the doctor was trying to acknowledge that your DD is feeling poorly but used the different word 'distressed' instead.

It sounds as if at the start it wasn't clear if this was going to be Hirschsprungs or terribly bad constipation and Leicester have advised the 7 days Kleanprep as either a) it would be bad constipation, the Kleanprep would sort it and DD would avoid even worse procedures or b) the diagnosis of Hirschsprungs would become clear but hopefully some poo would have shifted which would make them have better options for biopsies/surgery etc.

It does look very much like the outcome is going to be c) see what is recommended by the specialist in Leicester on Monday which I suspect is likely to be some sort of surgery.

Still thinking of you and sending our love from the south west.

I hope she can get transferred to Leicester on Monday. I agree, she might need surgery if it's Hirschsprungs. Do not let them send you home in the interim though - someone needs to keep monitoring her.

Jesus Christ

I'm so sorry you're STILL going through this. I was shocked to see you've needed another thread

You've got serious grounds for an enormous complaint. Although you've got more than enough going on ATM, it might be worth going down the complaints route even if it's just to get as many people involved as possible and, hopefully, get more people to take you seriously.

Also, you might want to think about putting negative feedback on the hospital's NHS choices page. They don't like negative publicity......that should get a response

Let's hope those comments from the Doctor proceeded from ignorance of DD's case. How could someone who has only just met her make such a pronouncement. Non urgent indeed! How bad does it have to get after 6weeks without a poo despite numerous drugs and interventions. Hopefully when you talk to her consultant or get to Leicester someone will see sense. I do think now is the time to get PALS involved. You need the support. Monday will be the time to put your foot down. No way can they send you home without a plan. that you understand and support.

Have you spoken to pals? Really need hcps to stop minimising this. Hope things improve soon.

I can't believe this is still going on. I think you're being amazing. Poor little girl.

I have nothing useful to add, but I have also been lurking and thinking of you and your poor little girl. You are doing amazingly, amazingly well and being remarkably calm and rational in dealing with really shitty treatment by the system. I hope you get somewhere soon and that your little one doesn't have to suffer too much longer x

I have read the replies and it has given me some comfort in that terminology used has a different medical meaning to how we would use it everyday.
Her nurse came and explained it to me and she will go as an outpatient to an appointment then come back as an inpatient or stay there as one.
I feel more confident in the plan now.
I have no idea if IAVBU as I don't understand the processes or how hospital work.

I will make sure I talk with PALS early this week as it sounds like they will be able to unravel it for us and for me to get my head around it

Are you confident about taking your dd in a car yourself to Leicester? And would she be comfortable in the car seat? If not, can you ask to be transferred there by ambulance, just so there are medics on hand if need be?

(apologies if this is overly dramatic)

In my limited experience, the nurses were the ones who took the time to make sure I understood what was what, explained and answered questions, informed us what we needed to watch for and how to help him recover.

There was only one incident when a nurse referred to a potential skin graft when everyone else had been so positive. It really upset me. She told me burns don't behave like other injuries, they can get better one day and worse the next, so not to rule anything out. I hadn't appreciated this. Of course the next day they had to whip him back into theatre for another horrendous procedure to prevent what was a burgeoning infection. Damnit but she was right after all, he did get worse. No skin graft, but the op was traumatic. The real low point of our time there. From that point on tho, he got better and better and better, and 2 years on most of his scars have gone.

Doctors and consultants IME seem to focus on the procedure and not the patient. For this reason their people skills can be lacking. That said, his consultant plastic surgeon was a gem, bonkers but amazing with kids!

Keep talking to the nurses, if you're not happy ask to see someone to tell you what is what and why is more not being done for a child in genuine pain and distress.

I think we would like to take her in the car. I think she would be comfortable and it would be less distressing for her.
Also, I wouldn't want to put any more strain on the ambulances would feel like a fraud going in one
she looks loads better this afternoon. Has started on the prep again now so expecting her to fill back up.
Still this is the last but one, so nearly there.
Dd6 has been fab. Is with my mum but is coming to visit soon. I can't wait to see her xx

You can't see a way out of this yet, but it will come, action will be taken and treatment will be given. It won't be like this forever pet, hang in there! Xx

Am glad you are feeling better and the nurse is explaining it all better. A lot of your posts do come across as though the doctors are using what they think is understandable language but not to a mega-stressed mum who has a poorly child and never had contact with hospitals before!

Grossly distended is pretty standard medical speak for swollen abdomen - it's a sign they have been taking this seriously for example if they have been saying that. But I don't think that has always come across to you - as a distant observer a lot of what has gone on, especially the liaising with Leicester does look like standard consulting with a specialist centre but somehow this has all been lost in translation when they talk to you.

Glad it's the last Kleanprep - moving on to the next chapter on Monday and keeping my fingers crossed.

I totally agree things can get lost in translation.

I suspect the GP, nurses, consultants etc see 1000s of cases of severely impacted children a year. They all follow the same treatment plan. i imagine that as you get through the plan you've had you get less and less cases a year - most of us here have got as far as impacted and emema as outpatient.

So whilst to most of us here and of course, and more so to you, not passing a stool for 6 weeks and having a blockage seems like a complete medical emergency, it's possible the consultants see it 2/3 times a year and have done for 10+ years of their career so they are somewhat more relaxed about it.
I think it's easy for them to forget that as a aren't you don't know the routine, plan that's followed, outcomes, statistics etc. And it's certainly not easy just to sit back and trust the doctors.

It does sound though as if they have a a plan - sadly it sounds surgical as they sound like they are communicating that they've tried all medical interventions.

Try (and I get that sounds rediculous!) to get some rest. Ensure you have arrangements for DD1 next week, clothes and toiletries etc so if you get to Leicester and have to stay there you are ready for it and don't have to run around last minute organising stuff.

I'm so sorry as I ad this back and it sounds unfeeling and practical. It's just so hard to get words to sound as caring and reassuring as you mean them too.

Delurking to send you the biggest hugs ever. You are dealing amazingly with a situation that would send anyone into a spin, and yet there you are, keeping it all together and making sure the hospital takes things seriously - you rock, and your kids are lucky to have such a wonderful mum!!

When my ds was having his first op, I spoke to the nurses and said, this is a burns specialist hospital right? This is specialise children's department, they do this kind of thing all the time don't they? They are used to seeing way worse than ds? Aren't they?

Yes she said. we get some very, very badly injured children, much more seriously injured than your son. We are used to treating these kinds of injuries every day.

And they get better.

It was the one thing that comforted me. I understood that while this was the single worst event in my entire life that I was in the hands of those who are used to way worse. And helping them get better

Have faith maemae we're all with you lovey xx