get it out before she pops 2

[littlemaemae]

Following on from aibu to take dd3 to a&e

Great Ormond st gastro team information:
Telephone number: 020 7405 9200 Ext 5590
Fax number: 020 7813 8258
Email: [email protected] or [email protected]

We are still in the same boat....no result properly as yet....thinking of you!

Thank you for the lovely advice and concern. I am so grateful for the support. We wouldn't be here if you hadn't given me the push I needed.

I am going to take a break and some time to think about the next step and look through the options suggested properly. I've got a migraine and feeling a bit down. Will log back on in the morning.

DD is feeling a little better but due to go back onto the the meds soon.

Her 'boyfriend' came to visit this morning and she had a session with a music therapist, which she loved.

Xxx

Not suprised you've got a migraine littlemae, I really hope things start to happen soon.

I'm not surprised, it's been going on for so long it must be getting a by overwhelming. Take it easy and take your time to look at everything. You're doing incredible.

This is genuinely distressing, littlemae. Your post about your DD's spirits dipping and face swelling made me quite tearful. I can only imagine the pressure you're under.

I'd love us to 'love-bomb' your DD. For us all to send her cards to distract her and make her aware how brave she is and how sympathetic we all are. I have a couple of craft packs I could send too that could help keep her occupied.

But I appreciate sharing an address on an Internet forum isn't really ideal.

Does anyone have any suggestions for how we could do this?

PALS are genuinely amazing. They advocate for you and make stuff happen. Do contact them. They will not cover anything up, they will get help for you and v fast in my experience.

I've been lurking here for ages and really feel for you and your DD. I'd love to send her a card if something can be organised that you're comfortable with.

I'm another who's lurked since the beginning and not really had any constructive input to add. But I jut wanted to send you lots of moral support and love from a total
Internet stranger. You have the strength to do this. I hope that they find the solution for your darling girl very soon.

hope migraine relieves itself soon and you get some answers.

Same as Magrats, I've been following from the beginning and every morning hoping for some good news. Sending you love and positive thoughts, you are doing an amazing job fighting for your DD, don't ever doubt yourself. Stay strong and I hope your migraine passes quickly.

littlemaemae I've read both threads & my heart goes out to both you & your little dd. I have Crohns & I know how distressing constipation, laxatives & an NG tube was for me so I can't begin to imagine how awful it has been for your dd & for you & dp having to see her go through it all .

I hope she's now getting the care she so badly needs but if you need another option may I suggest St Marks hospital in Harrow. I know it's in London but it is a specialist bowel hospital & I have heard so many good things about them from other IBD sufferers. In the meantime I hope your little one gets some rest & your migraine clears up soon. You are both so brave, I hope it's all sorted soon.

I posted earlier in the thread but generally just stop by to read your posts littlemae.
You're doing so well, I just wanted to say I'm in awe of how you're coping. I'm more and more worried for little littlemae every day and as we've all said, I hope she gets treated VERY soon. I would love it if we could all do something for you, just not sure how it would work but for now, keep us updated and know we are all here for you.

Another lurker sending support.

Another lurker sending support

Omg I can't believe this is still going on!!! This is unbelievable!! Why the hell aren't they acting. Sending huge hugs x

What can we all do to help.. Do you want us to lobby your mp or the chief exec office? I am furious on your behalf this needs sorting to stop her suffering!!!!

You are all too kind, DD is absolutely spoilt as it is! But it is such a lovely offer. Your support is more than enough. I Wish I had such lovely friends in RL

DP wants zero fuss, he isn't really discussing this with me and he doesn't really know about this thread. So if it's ok, I would prefer not to get onto the MP or anything public as I am worried it will out me, I have probably given too many details to be anonymous also, his job means he can't have anything personal 'out there' can't have FB or anything like that. It's very strict. But thank you so much for the offers of help with this.

DD had a better day. Very caring nurses.
She struggles at night. Had had pain relief though her NG this evening.

We spoke to a few doctors today and were told there will be no quick fix. we have to get her more comfortable and clear some of the blockage but the whole impaction will take some time.
We have been over optimistic about her being better by X day.

Poor poor baby. Seconding Sheffield as awesome. Have never heard anything but praise for the CH.

I have been in your shoes with my dd. Still having problems now. My dd lost the sensation of needing to wee and never got it back after a bad episode of impaction. I second the moving to Sheffield posts. I hate Drs when they don't do what needs doing and put it off. I find they do that a lot.

I just feel for you hun, you must be going through hell.. I am lost for words for how terrible this has all been for you all. Truly shocking. Most of all i hope your sweet girl can quickly get back to being a little girl again free of pain and discomfort. I just want to come back to happier news xx

Don't know what to say that will help you, I do worry so much that the doctors may not know what they are doing. Sorry (unfortunately I, along with others, have had poor experiences). Make sure you write EVERYTHING they tell you down and make sure that they see you doing it. The very best of love to you all xxxxxxxxxx

So is she pooing at all now? Is anything shifting? I thought this stuff would sort of soften it all so bits would start to break off and move. Is that what it is supposed to do? She surely can't be expected to pass a 5 week poo that is stuck at once..

I think the Kleen Prep is supposed to break the impaction down so it is easier to pass. But from earlier posts it seems to be quite high up in dds bowel so it needs to move before it can break down (I'm guessing here). I am assuming this will take some time. Hopefully it won't take too long now she has an NG tube & doesn't have to drink the Kleen Prep

That is what I thought but it does not sound as if anything has happened at all this week for her n terms of any if it coming out. The hospital seem to be giving different advice every day. I think I would ask to be referred to GOSH.