get it out before she pops 2

[littlemaemae]

Following on from aibu to take dd3 to a&e

Hi maemae I haven't been on in a but. Got admitted to hosp myself on Mon and still in . I see you've mentioned play specialists etc and realised that if you emailed me on the one I gave you I wouldn't get it whole in hosp as I can't log on via phone. Well prob can but passwords crazy complicated and saved on lappy. So apologies if I have ignored you! I'm wondering if they were part of the play specialist team and not actually play specialists. There's loads online about explaining medical procedures etc to kids which might be helpful. And then if need resources for this can ask for them. If she was in my case I'd be doing some kind of big filled up balloon thjng to be stomach and exploring that. So glad she saw music therapist. Just to have some expression time and some control to do what she needs. Great news.

Re the rest...I am finding it so difficult to understand why they are being like this. I think I could have gone home today. I had a set back last night and again this afternoon but I was happy to leave but they were insistent. I know I will have to fight tomo to leave too. It's so frustrating that it's opposite ends of a scale. I'd happily donate my bed / Dr's time to your dd!!!

I do think potentially rocking up at another hosp is an option. Re the pain relief....unacceptable. they can put it down her ng. Easy peasy. Takes 2 seconds. I was shown how to do it for a MNers dd when O was helping her in hosp.

Agree with lulu

I think a totally fresh set of eyes will be appalled by this.

We got offered the ACE procedure (appendix is made into a opening for tube directly into colon), but opted for a Peristeen anal irrigation system, which has helped a bit. A Peristeen will only help the build up stop once the back up is cleared but it's worth a chat with a dr for future use. The company that makes it has a special play nurse that comes and helps the child get use to it. They even bring stickers and even a soft toy.

Peristeen are fab.

Have you thought about calling [http://www.eric.org.uk/Help?PHPSESSID=c0cpt78n06og9mc62qmqcfukg7 ERIC's phone line]? They are fantastic, and will be very knowledgeable.

Sounds like you need reassurance that the slowly slowly approach is worth her pain and distress.

Hang in there.

op I'd be worrying about the risk of bowel perforation at this point. Ask them some version of the following:

'DD has not pooed now since x date. What are the risks of manual extraction please?'

'Please can you explain why we're taking the slow route rather than going for manual extraction? She is traumatised enough by repeated ineffective procedures, we really want to reduce her pain and to get her home as soon as possible.'

Then, as suggested, carefully write down their answers and take their names. If feeling particularly bellicose, print their answer up and ask them to sign it next time you see them. Might focus their minds on the possibility of being sued and 'encourage' them to give advice that's better for the patient instead of easier for the staff.

Poor littlemae

very curious as to what your DH does btw!

Some people prefer the slower option. My DD is not at all keen on the surgical options ( neither am I if I'm honest) but some people like them.

So I don't think the hospital is wrong, but if you prefer a different approach then try somewhere else.

You are being very calm. I take my hat off to you.

It sounds like you are feeling more confident in her care. Good stuff.

Also, remember most of us are not medical professionals (I am not) although it sounds horrific to us lot, it might be more common and less serious than we all think iyswim. That's still no reason for her to be in pain.

I am thinking of you and your family and sending lots of love.

Still thinking of you and wish there was something I could do to help but it seems like you've got good people advising and supporting you. Use that support. Remember doctors aren't God and don't know everything and don't have the emotional tie to your child, nor do they have to live with the consequences of any decision they make.

Hi I have just popped home to gather a few bits. I haven't had time to properly read though the post properly, really sorry I'm not being ignorant.
My phone charger has stopped working so off to buy a new one and then will be back on later.

DD had another bad night but better today. Frequent brown water nappies but not much in the way of quantity iykwim.
Dr said that rupture is unlikely because she has been stretched so much slowly that her bowel is very elastic.
She is waking up with a puffy face and eyes like an allergic reaction but they think she is retaining water. Her bum, legs and arms are particularly squidgy and cute , so I think that's what it is.

Anyway, I will be back on later, just wanted to say thanks and I'm not ignoring ! Xx

Oh and giraffe. You poor thing! Adult wards are horrendous and I know how poorly you must be feeling and will do for a while to come

Have they done the referral to Leicester yet?

to both of you. I've no practical advice, just wishing you both continued strength, and hope that the little one is much better very soon. Take care.

is it just a waiting game? Can't they manually move the poo? Surely they can do something to move this along?

Hope things improve very soon

Brown water is better than nothing!

They can't manually move the poo as it is too high up - just by Littlemae's photos it would be way up in the colon. You can't put a hand up there!

I thought Leicester were now advising and they had asked for the current week's worth of Kleenprep plan.

littlemaemae
I check this thread every day to see how DD is progressing.
to you. You sound so calm and sensible. Well done for holding things together.
I hope DD is not getting too bored in hospital. Hopefully she is young enough to get over it afterwards.

So is the move to Leicester off? Is the consultant actively engaged?

it sounds as though you are happier now with the hospital you are in but is there a plan? I wonder at what point they will decide to look at other options?

Why is there water retention though? Particularly if she's only passing out brown water and not brown bits and lumps? Have they a plan? It's Friday!! Usually, when water starts coming out it tends to indicate that there's no more lumps (becomes more like watery stools or diarrhoea). Is there still a blockage?

They wanted the week of klean prep then I'm not sure what, I am still a bit confused by the next step. The doctor is mentioning an outpatient appointment there and then maybe inpatient. But I think it may be 2 seperate things he is talking about
Brown water is a real improvement as it was green/ yellow before. It's poo coloured now. So that's a good sign!

Is it Leicester that wanted her to have a week of Klean Prep before taking her, or was it your current hospital who wanted to try that regime?

Leicester wanted that and it is better we are local for it to be fair because of dd(6) and school.
I apologise if I am being confusing, I am confused myself. Really disorientated!

If you need to go to a specialist centre, then not having to travel far is really helpful plus your local hospital and services will be used to liaising closely with Leicester all the time.

Fingers crossed esp as the water colour has changed to proper poo colour - hopefully it's wearing it away!

You make total sense.

It sounds like you are better informed now and the docs are explaining everything better.

If I were you I would make staying as an inpatient a priority. Under no circumstances go home. Even if their arguements seem convincing.

Secondly, look forwards to the plan. Keep saying. Is this what you would expect? What are you planning to do next?

Are you taking care of yourself. I know sleep is difficult, but make sure you eat even if you don't feel like it. Xx

Littlemae hopefully brown water is good news? Maybe it is gradually wearing the poo away? Fingers crossed for some movement soon