get it out before she pops 2

[littlemaemae]

Following on from aibu to take dd3 to a&e

How are you all today? Sending you strength

I posted on the previous thread, and now I'm very happy to see that your DD problem is finally being taken seriously! :)

Fingers crossed things start to move for you today, dd and/ or hospital.

Just checking in to show you continued support - hope things are not too stressful.

I can't think about possible withholding right now. It makes my stress levels rocket. We have been treating This as withholding for as long as I can remember, educating her, encouraging her. I have even called CHAMS and asked if they would take a referral for her I was that desperate (they thought I was the crazy one!)
But since I have been properly educated about it myself and understand the mechanics of impaction, I see that she has been simply unable to go. And I feel terrible for putting the responsibility on her choosing to go or not.
Giraffe, that would be really helpful. I don't understand the ins and out of play therapy and specialists. I will pm you when I get the chance/work out how!

We were up till about 4.30am with the nightmares and tummy pain. She was screaming out her sisters name like she was in real danger, I'm wondering if she was dreaming about he enemas and thought her sis was the only one who could help.

Have called hospital as have not heard from them, we are waiting for a call back.
I don't know if she is going to go in, be transferred, stay at home.
It's stressing me out so much because dd6 is back at school in the morning and I have no idea what is going on or if little DD is going to get any help at all.
Thank you for the encouragement. You are so kind. It really means a lot to me. For once I don't feel alone xx

little have sent you a PM re play therapy/HPS

If you haven't already got a bag packed for you and littlemae to go into hospital, maybe do it now. Might help you feel calmer, to be ready for at least one outcome.

In fact, I'd be tempted to go further.

1. Pack the bag
2. Make arrangements for DD6 to get to school tomorrow without you (DH or friend perhaps?)
3. Make sure DD6's clothes are laid out and ready for tomorrow
4. If so inclined, get some food in for DH and DD6 for the next few days

THEN (5) go to the hospital with littlemae and the hospital bag and insist on being readmitted, because she hasn't pooed and she needs to and they clearly find it very easy to forget about her when she's not right there. Do not worry about being That Parent - it seems to be necessary in this case. Maybe give it until 4pm, then go in (it'll give you/her time to settle in for the night and also give them due notice that they need to find her a bed).

Re withholding, it's irrelevant now. Whether or not it started that way, it can only take a few days of voluntary withholding before it gets difficult and then impossible to go. It's not your fault, and it's not her fault. Anyway, it sounds like you and they now have suspicions that there is more to this, and a possible physical cause.
Hope they phone you back soon, keep trying them if you don't hear. Try the consultant's secretary too, I'd be wanting to speak to him personally if it were me, not a junior. You need a plan.

Have not posted before but have been following i really hope you get the treatment you and your poor DD deserve! Second the play therapy was a God send to my DD who was 15! Am in hospitial (all different types of hospitals!) with my DC so PM if you want any advice I also know quite a lot about hospitial guid lines and procedures

Hope she's OK, Littlemae

I don't know anything anout play therapy, bu it sounds like a useful tool. I hooe you get a great therapist.

Thank you for pm giraffe, you seem
Absolutely lovely!!
Lacontessa, thank you, I have done all that you have suggested and I feel far more prepared. I have cleaned the house, done most of the washing. Have dd6's stuff for the week ironed and ready.
And all of the other replies, I hope I can be of some support to you guys one day!!

Consultant called back, he was lovely and I really feel I can trust him with her care.
He said he is speaking to Leicester now, and will have a plan tomorrow. we have exhausted all options and we are looking an manual removal under GA. her age and the fight in her makes things a lot harder. It's also very unlikely she will tolerate having a NG tube put in for more klean prep. and she is drinking a lot less.
I hope to god it does not come to that.
My mum can sort DD6 out for school, she isn't that local but we will have to manage. I always help friends in an emergency but I don't have anyone in the position to help me for various reasons. IYKWIM.

FFS I am absolutely fuming at all the gps I have seen who have fobbed us off. And now my tiny sweet girl might have to go through this horrible operation when it could have so easily been prevented.
I try so hard not to blame or be angry.
I want to handle things in a dignified way and keep my self calm and collected as I hoped this would get HCPs on my side.
I should have kicked off from the beginning and not give a shit what they thought of me!

A manual under GA will be a lot less stressful for your dd than what she has already been through , best wishes .

oh op - try not to think that way!

A lot of the time the treatment regime would likely not have changed regardless what you did or said. And given it hasn't worked you would likely have ended up here anyway.

It is so very tough for you all at the moment - but mostly it is tough because your DD is ill and you didn't choose that and you are not responsible for that.

We all have to face life with not enough information to make the best decisions, fighting systems that if they worked in our case we wouldn't have to fight!

You are doing a fantastic job for your DD and you can't know it could ever have turned out any better. What is totally clear from all your posts is that without the work you have put in to get the care for your DD it would indeed be going a lot worse. Try to realise how crucial you have been in supporting not just your DD but all your family.

ask for all other tests to be done while under GA eg biopsies etc.

Most children tolerate GA very well and bounce back really quickly

Not sure I understand op - are you hopjng there won't be a manual extraction? Obviously it's not ideal, but given the choice of that or continued struggles with klean prep it sounds like the less stressful option and also more certain of outcome. Once it's done then medics can focus on preventing a recurrence rather than continuing to battle the blockage.

I'm sorry, I can only imagine how awful you feel. However I can just imagine you drawing on this experience in future medical battles when you need to do the polite-yet-very-firm thing of 'That does not work for DD. She needs xxx'. You pushed this time and she's getting treated finally - you can be justifiably proud of that!

ask for all other tests to be done while under GA eg biopsies etc. Most children tolerate GA very well and bounce back really quickly

Good advice

Would it be possible for them to site the NG tube under the GA instead of doing the evacuation? Didn't they say the obstruction was too high for manual evacuation, or has it moved much further down now?

Keep going OP.

Have more and then maybe a stiff gin!

Please try not to focus on the guilt and the angst now. Since you started this thread, although it has been traumatic and still no poo, in fact you have made massive strides in terms of getting what DD needs. You now have a consultant who is engaged with her case and has acknowledged that "something needs to be done".

Later on when DD is better, then you can decide whether an official complaint is the right thing to do.

Great advice from Lacontessa. Can you get more practical help in RL? Is there anyone who could come and stay or even just pop in to help with the domestic stuff so you can concentrate on your family?

I hope the consultant has positive news tomorrow.

It has moved round a fair but to the other side of her stomach but still not in rectum.
I'm not worried about the GA I just hate the thought of them going up through her tiny little bum.
And it's hard to get my head round it as this has been the norm and now this might have to happen.
I'm not trying to be dramatic, it's not the end of the world. Just a bit of a shock as I thought it would be easily solved with some movicol

No, I can see why you're upset about it, the goalposts have moved so many times and you must be so tired by now, which never helps. Will you be under the same consultant if you move to Leicester? It's good that you have confidence in him.

For a short procedure, a 'GA' is likely to be a whiff of gas and a squirt of propofol. It won't be l like you see in films with hours of anaesthetic. It's still scary, but when DD1 had her MRI under GA she spent longer in recovery than in the scanner.

It is very normal for procedures in children to be done under GA that in adults you'd just have to put up with - the procedure itself will prob be very quick compared to all the faffing and recovery time and they will try to do everything altogether.

It sounds like you have a great consultant on your side now - I'd guess it wouldn't be the same one in Leicester but someone more specialist in gastro than in the local hospital.

I've been watching this thread from the beginning Op and feel awful for you and your dd that you've been treated so badly over the years. I'm heading you're getting the help you need now.

Just something you may not know about, but a relative of mine (who'd suffered for nigh on 55 years with awful, life limiting constipation), finally saw a consultant who recommended then performed an operation to enlarge his anus. It's apparently made a huge difference to my relative's life and he wishes it'd been done years ago. I don't know if this is a possibility for your dd, but if she has to have treatments done under GA then perhaps this is one to consider?

i always help friends in an emergency but I don't have anyone in the position to help me for various reasons

I know exactly what you mean. Do you have Facebook account if so I'd stick a general status up saying "X has been poorly and under the care of the hospital since x date. Can anyone help with x y or z?"

Be clear what help you need. Then wait and see who is a proper friend. Cut out the Deadwood.