Night of hell in hospital with DD

[jenk1]

Took DD into hospital last night at her paeds request to monitor her breathing.

She wouldnt let them put the probe on her and kept kicking it off/crying, the nurses were getting quite stroppy and i said to them do you realise that your CDC dept think she is ASD?

I showed them the report and they were nice after that, until i asked one of them to write on the sheet that DD was foaming at the mouth (cos she was) and that the Paed had seemed to think that was significant, she said "well what we do is we wipe it off with a paper towel" and i just stood there looking at her, can you write it on i said she said i will do it in the morning, the machine when we did eventually get it off was showing her oxygen sats dropping especially when she was stopping breathing for a couple of seconds, i called them in but they just said oh.

When the registrar came round and i told him he said to the sister "this should be on the notes" and then he said "she has very good eye contact for a child with ASD" so i said , well girls do, i do.

And then he said oh yes i remember you have AS, whats your speciality is it numbers?

I just looked at him in shock.
Then he said he was getting someone from ENT to look at her tonsils.

5 hours went past, the playroom was shut and i was stuck in a room with dd who was getting very very stressed, so i asked and DH then asked twice if they could phone ENT but they said they didnt know who was coming and they couldnt do anything.

DD started pulling her hair and headbanging, she functions 100% with routines and advance notice and it was too much for her, so DH told the staff nurse that we were taking her home, wait 5 mins she said, 20 mins later she said there was nothing she could do so we told her we were discharging dd and we went home.

The registrar has just phoned me and told me that the nurses told him we were very upset at our treatment (lie) and that we just walked off the premises and they were looking for us, so i give him what for, i told him that i wasnt being accused of something i hadnt done that DD has ASD they all KNOW THIS and what did they want me to do?

Watch and see her start self harming?

I told him that i would phone the consultant tommorrow, he said OH NO theres no need for that ill phone him.

Im so annoyed, i dont know what to think, whether to write a letter complaining but then dd is often admitted to this ward and i dont want a bad atmosphere, but the way we have been treated is disgusting.

...Rant over now...........

dear Jenk1

You sound like you have had a right time of it you poor thing. I cannot begin to imagine how you must feel. I remember once when my daughter (now 4.5 yrs) was kept in hospital over night a few years ago due to a febral convulsion and she was a nightmare, due to nothing more than being strong willed and hating being pulled about.

I hope that you manage to get the issue resolved and have a better experience next time.

jenk so sorry you had such a hard time. I do think(and I will be jumped on for this no doubt) that hospitals just don't get sn. We had problems when dd was in when she had a fit. There was not even a chair she could sit in. and the beds were unsafe for her.
You must feel so frustrated. do speak to the consultant or the hospital ombudsman(sp) they are very good and can sort a situation out without it becoming personal.

im just in 2 minds, on the one hand i DO want to tell DD,s consultant about what went on but then i dont want to cause trouble, but then on the other why should we be treated like this?

I think i need to sleep on it cos i didnt get any last night anyway!!!!

sorry, but not surprized that you had awful treatment, i would complain

write a letter to the hospital. We had a tough time when dd1 had to have her tonsils etc out and grommets in - we spent a very stressful day at the hospital the day they cancelled her surgery.

I simply wrote explaining what had happened, that dd1 had sn - as evidenced by her notes, what we felt could have been done better and how disappointed we were. I also stated that as I did not fully know hospital policy perhaps he could explain certain things that happened so that I could better understand what had gone on. I also wrote from the standpoint that they would want to know about this and so it could be dealt with effectively.

things were so much better the next time we went in for her surgery.

surely if you discharged dd you would have had to sign paperwork. We ended up signing dd out and gettting the script we had waited over 2 hours for done by our GP - but before they would release her we had all sorts of paperwork to fill out - so them looking for your dd is not your problem.

they didnt tell us that we had to sign any forms, but thinking back now i can see that you do.

But we were telling them for over an hour that DD was very distressed and that we wanted to take her home, there were doctors on the ward and they could have got one to see us and yes its not our problem that they were looking all over for dd.

I want to copy dd,s consultant in on it as i feel he will be horrified at what has gone on, i know his registrar asked me not to phone him yesterday but surely he has a right to know how his patients are being treated?

jenk- I'm so sorry - I think you and your dd were treated appallingly. I agree with 2shoes about some hospital staff 'not getting' sn and am equally prepared to be jumped on.

I witnessed a very distressed mum in A&E recently whose 10 year old boy was ASD. He'd fallen and hurt his arm and face. He was beside himself, really howling and obviously very frightened and confused.

He and his mum were in a small room and the nurses kept going off and leaving them, telling the mum they'd come back when she had him under control. The poor woman was crying and trying to explain he was autistic and could they just give him some pain relief. One nurse walked past me, raised her eyes and muttered something about "hysterical parent".

Terrible treatment, I didn't see the outcome as my ds went off to have his arm plastered

Just wanted to send you some hugs. We were in hospital for a sleep study on Tuesday night and had a bad night too, and ds, although special needs, does not have ASD. I can not even begin to imagine how you must have felt but can't blame you for discharging your dd. I would write a letter to the hospital, your treatment was unacceptable. I doubt it would cause friction for future visits, if anything I would think that it could only improve matters.

hi jenk

what an awful night you had. i would complain in writing. my ds has received appalling treatment from our local hospital and his paeditrician so ive written and complained. at the moment im waiting to be referred to London. i refuse to see the paeditrician in question as i feel hes totally incompetent and has an awful manner and doesnt inform me of half of ds's test results.

the nurses on the ward my ds has been on have been so overworked most of the time that their care of the patients is definitely not up too scratch.

terrible for you that dd has asd and they didnt believe you

Hello Jenk

Horrible. Being in hospital with yr child is hard full stop. Without the lack of understanding of her needs / outrageous comments etc. If I were you I would contact the PALS department of the hospital. This was put to me by a nurse (after another nurse in NICU commented on my baby's 'abnormal' way of positioning her arms when sleeping) - if families don't speak up / complain / challenge such practices will continue.

Mind you, didn't follow this myself in A & E when I overheard 2 doctors talking about DD's 'striking' and 'v obvious' facial features and referring to her as 'the chromosome abnormality'

thanks everyone for your supportive messages

DH has written a 3 page letter to the consultant and posted it today, i have been crying all morning because i cant believe how they treated dd.

Then this afternoon DD,s consultant phoned me, first thing he said was "Is DD ok, is she allright, thats my priority to see if she,s ok" and i said yes and he said good, he then said he,s sending a letter to Royal Manchester Childrens Hospital to do an indepth study of her sleep as they are better equipped, he said i know a little of what happened yesterday and i said well my DH has written you a letter, he said Good i want all the facts so that i can take this matter further and that is what i am going to do, please please phone me, you have my tel no if you are at all worried about DD and please have my assurances that i will sort this out.

So i feel a little better now, not a hysterical mum as that is how i was made to feel.

DH has put in his letter that he,s very disappointed of the treatment of his daughter and his wife who both have ASD and that if he is coming across as being overprotective then he doesnt care because given the situation of our family as me,dd and ds all have an ASD thats the only way he feels he is able to act, he said that i was very frightened as the machine was dipping as low as 45 for hearbeat and 84 for oxygen sats and that the nurses didnt even put it on the notes, that no one explained to me or him how the machine worked and that its very frightening as dd,s parents to first know that she stops breathing in her sleep and 2 for it to be recorded and no one take any notice.

what a lovely consultant you have! glad hes rang you, just goes to show that you werent over reacting

I am so so glad that you managed to speak to your consultant and that he has eased your worry some. It is very easy to be convinced that you are over reacting as a mum, but if its one thing Ive learned over the years, its to trust your instincts!

Best of luck with it all.
x

Well done for complaining. I suspect the Registrar didn't want you to tell the Consultant because he knew he'd be in deep sh*t.

If ASD could be discounted simply by judging eye contact then we wouldn't have children stuck on waiting lists for months or even years waiting for a dx! FFS!

The Consultant sounds fantastic.

Well done for complaining! I am pleased that your consultant called and has your dd's best interests at heart, he sounds lovely!

As for the machine that monitors sats & heart rate, my ds had one of these strapped ot hsi finger on tuesday night, no explanation, nothing. Good thing that as a parent of a child with a heart condition I have seen many pulse oximeters before, but an explanation would have been nice. They didn't even have the fore thought to put it on his toe as opposed to his finger. Then they wondered why ds spent most of the night tossing and turning or awake and pulling the probe off . It has been almost 2 years since ds has actually been admitted to our local kids ward, although we are at the hospital all the time. The difference between our local hospital and the children's hospital is amazing, they are poles apart. It shouldn't be like that.

Anyway, i hope that you get some answers, both for the hospital about their treatment of you all and from the indepth sleep study