get it out before she pops 2

[littlemaemae]

Following on from aibu to take dd3 to a&e

Leicester hospital supposedly has a children's hospital within it, it's a nonsense that they can't get through to anyone.perhaps they mean they cannot speak to a particular consultant there. I have followed this from the beginning I really don't want to scare monger but I am getting concerned about risk of bowel perforation, I am not a children's nurse but an adult nurse and have looked after people whose bowels have perforated. I honestly would take her in to Leicester and say after 5 weeks and with increasing pain you are too worried to have her at home, is she still eating?

But Wol could they not correspond by email and at least get the communication going ? The little girl presumably needs to be admitted and that can all be going on while the Drs coordinate. Or is that not how it works?

At this rate the Leicester consultant may or may not respond tomorrow and before we know it it's the weekend again and they'll have made no progress since the last admission

I'm so sorry you're still in limbo.

It is of course rubbish that they can't get in touch with Leicester. It is possible they couldn't contact a specific consultant but there is always one on call who can be reached at all times day and night.

Provided she's settled tonight, I'd phone your hospital first thing tomorrow. Make it clear that you're going to Leicester a&e immediately if they can't offer a sensible plan to help your DD. Phone PALS and ask for help. If that doesn't work just turn up at Leicester A&E.

Keep notes too about who is saying what and when.

How are you both doing?

if she was mine [and it's easy for me to say this because i am not in the situation] i would be packing a bag and taking her to another hospital and e department. preferably one in a big city. even more preferably a teaching hospital. tonight.

How about a thread on AIBU to see if there are any paediatric specialist MNers who haven't noticed these threads , and might advise on getting some immediate action ?

If you go to Leicester A+E they will have absolutely no idea what you are on about and have none of your DD's records.

or they will read through her history and provide the relief that she needs.

f you go to Leicester A+E they will have absolutely no idea what you are on about and have none of your DD's records.

Absolutely understand that but they could contact her current medical team and request the notes (i.e. Leicester take the lead rather than being reactive).

Scans can be digitally sent to other hospitals, they are readily available on all hospital computer systems.

No medical experience here but I am good at getting results. I think I would go to a and e and make a fuss. Probably a different one as yours seems a little... Well... Crap (ironic). Your doing so well to look after her and keep her at home but for some reason they haven't sorted this out and I think the push of going to another hospital may get them in gear.

So much respect for how you and your family are pulling through this. I would be a crazy lady by now.

They quite possibly have corresponded by email - i.e. sent one that hasn't been replied to yet. We don't know.

This sort of situation is quite normal when communicating with specialist units or consultants and you don't think it is an emergency i.e. must go immediately now, but you need their opinion or some sort of discussion before hand.

The specialist unit will want to know the whole situation before they agree an admission - so all the co-ordinating happens first, then they have to make sure they have a bed available and so on.

Of course they could have consulted over email and of course these things take time. Having said that, there are some hospitals which are indeed head and shoulders above the others. Great ormond st being one of them. I don't think having a personalised replied on email 5 min after sending it, having phone calls to share blood results and 'next steps' are necessarily part and parcel of 'job description' of consultant/medical team including secretary. And yet it has happened. To me.

Before my child's admission, everything that happened till then was a catalogue of disasters.

Fantastic treatment and communication can happen. It just happens too far and few between.

Hi, thank you for the helpful replies everybody.
He has just called me and he wants to see her tomorrow morning, he is going to fit her into his clinic and send her for another X-ray. He said we may get a better result with the other hospital if he has seen her before hand and she is there, to expedite things.
I don't know if she is in a better position than she was last week or not.
The blockage has moved round a bit but it is still there. So that may be irrelevant.
She is happy now for the moment. She is very up and down and unpredictable. Makes me feel like I am going mad.
I am no good with things like this. I need lots of notice and structure and to be the one planning things.
My anxiety is so bad I can't hear a thing over my own breathing. But I know I am keeping it together very well. Dd6 is such hard work. I'm trying not to worry her.

Little DD isn't really eating. She is drinking a bit.
Dp is trying to stuff her with food as he doesn't want her to get any more 'skinny' it's infuriating me. I think making her eat if she doesn't want to will make matters worse.

Poor little girl. Really hope it's sorted soon for you OP

I really do think that its time to create a big fuss, you poor things. This is an intolerable situation. Remember if go back to the hospital ,ask the questions like can you tell me that she won't get any worse etc, can you tell me that she won't get perforated bowel etc. Write down anything they answer to this. Its amazing how suddenly the doctors appreciate the results of their actions. (I speak as the mother of a child who died through doctors negligence) I am not trying to worry you, but just know that doctors are not always right! Thinking of you all loads xxxx

Tell your DH to stop forcing food on her. If he means well he should accept it if someone tells him he's wrong, not unkind.

Another one sending you my best wishes, you say you are "no good at things like this" but you really are. I wouldn't worry about the eating for now, just concentrate on the liquids. You can work on building her up when the blockage has been removed. This is coming from a mum who's dts have always been skinny and sat on the 2nd centile.

Your doing well.

I agree with you re food if she's hungry and wants to eat let her but I wouldn't be forcing her.

Dd dropped a lot of weight due to allergies and once sorted she was put on a high calorie build up drink

This could be something to think about further down the line but I wouldn't focus on it at the moment.

Her dad must feel helpless and this could be his way of showing his support. Maybe put him to use writing down what's happened up to now so your prepared if you need a history

Littlemae I'm still lurking and hoping things work out for you and your DD tomorrow. Also sending best wishes from DH. DS is 3, he is a skinny thing but normal for his size, and generally eats really well - he is on the move a lot though. Seeing the pictures of (I'm guessing) your hands around your DD's top shows how tiny she must be.

Just want you to know you're amazing,
I can't imagine the stress you're feeling. Make sure you keep writing stuff down, and whenever something gets mentioned about an op or procedure ask lots of questions. It's something I've found helps calm me down a lot. If you need a few minutes, take a few minutes, compose yourself, write stuff down and take a list of questions with you. Tell them you feel anxious and want to know more about what they want to do and how it will be done. The medics will happily talk you through the procedures and having better explanations will hopefully out you at your ease.

I'm going to keep lurking. I just want you to know that you're doing a great job. Yes you're stressed, who wouldn't be! It's allowed, it's expected! It is normal. I hope you manage to get some rest this evening.

I'm afraid I've no meaningful advice but another here delurking to say I've followed since the beginning and to offer some virtual support. I've everything crossed that tomorrow brings better news and in the meantime you have a peaceful night. You are being so strong.

Landrover,you are amazing. I wouldn't be able to carry on. I am in awe of parents like you.

I have told him straight about the food. I am not one to 'let it go' we always have it out when it comes to a difference of opinion. But still respect each others views.
He does feel helpless. I am trying to be kind to him.

When I get my head together I will work out what went wrong and when. Will request her medical notes too.

It's bizarre she hasn't had a good result with any of the treatments. Perhaps it was just assumed that 'X' would work and it would be simple, st each point.

Hi littlemae, was just checking to see how things are going I'm so sorry things are still so difficult for you. You are doing brilliant by the way, I'm sure your dd situation is pretty much an emergency now after 5 weeks. I really hope things move faster for you as it is a bit rediculous now how long this has been going on.

Do you feel confident asking for a referral to GOS, experience of there with my son & the care is second to none. I understand that you are in a system, I have been under local hospitals with my son before we got a transfer and I understand the feeing of hands feeing tied & wanting to trust the system. But it may be worth asking about referral to GOS or another children's hospital near you, I have seen Birmingham mentioned on this post.
If you daughter is in pain tonight, A&E or phoning the ward would be completely acceptable.

Good luck for the night & hope tomorrow brings answers.

I'm so glad he's called. Do take some time, even 10min to gather all the questions together. Categorise them if necessary into groups of questions. E.g.

Tests: what tests have been done, and what have the results suggested?

Are you ruling out X, y? Why are you doing that?

What are you considering are possible next steps?

What do you think it really isn't?

Go on the website of hirsprung and see what some of the symptoms are. Check against what your dd has.

Check out alternatives.

When my son was first admitted, we didn't know exactly what he had and it took them 2 weeks to figure it out but they were v thorough. I was asking many questions. I even had an American consultant weighing in from Stanford (family friend). And great Ormond st were vv happy to take those questions.

I was another one asking weird and wonderful questions when DS2 had a rare blood condition.

I looked up lots of info (I was the one to put a name to his symptoms in the first place after several trips to A&E) and queried their decisions. Good doctors are happy to discuss and explain their rationale with parents.

Re food - she needs calories but not bulk. Milk is good, but there's the issue this might be diet related. Would she drink things that are high in sugar like lucozade? Ribena? No diet / sugar free food. Hospital should be giving you guidance on this?