To not want to leave hospital just yet?

[Rubica]

Been in hospital 2 nights. My son (4 months) has had repeated episodes (x3) of turning blue, stopping breathing and going floppy. He also was not himself when we went to a&e and his feet kept turning blue (much bluer than you would expect). He then projectile vomited all over himself yesterday morning.

He's had a heart trace - all normal. Oxygen levels have been up and down but they blamed that on the probe on his foot. Heart rate all normal. One of his floppy episodes was yesterday whilst he was in hospital.

The doctor has been round and said it might just be one of those things, and wanted to send us home. Then he had another episode (witnessed by staff) and they kept him in.

They've said he needs a heart ultrasound and if that is normal, no further tests. I'm terrified of it happening again. They've taught me CPR just in case I need it. They want to do the ultrasound as an outpatient as they don't have space to do them over the weekend...

Would you be happy with this? Would you be happy with being sent home before the ultrasound?

I'm so scared. The first time it happened I thought he had died.

best wishes op, dont google though.
the medical staff as above will have your best interests at heart.

DointItForTheKids
For goodness calm down, all you’re achieving is winding the OP up. Looking at the child not the monitor is one of the basic rules of nursing. No one is saying he wasn’t actually having a blue episode at the time he had sats of 70. The OP needs to talk about her concerns (OP write things down as you think of them) and not be wound up further by the dramatics on this thread.

And is OP meant to lie awake at night and watch her baby every second to observe him 'collapse' so she can hang around and see if she needs to start CPR?
Of course she should be worried, and she needs to express those worries to the team looking after her baby, but keeping him in until he’s 15 isn’t the answer.

@IAmWonderWoman I do agree. There's a balance between not doing unnecessary testing and not doing enough. I don't know where that line is and I think it's normal in situations like this to worry not enough has been done. I don't know why I'm concerned that it's his brain or another issue they've missed and is presenting weirdly.

Does your baby have reflux OP?

@Jackyjill6 not that I've noticed. He did projectile vomit yesterday and he's not done that before but apart from that, not that I can see.

I don't know where that line is

This is why I would ask if they would be happy to be discharged if this were their baby. If they would, I think this is extremely reassuring and you can have confidence that there is no need to be in hospital.

I'd be asking them to check the brain for something like the vein of galen. It's really rare but friends dd has it. She had similar symptoms as a baby and the doctor scanned her heart and couldn't understand why it was fine as it didn't make sense. He suddenly had a thought and shoved the scanning device on top of her head and found there was an extra vein. It's so rare that it's amazing the doctor found it. After 6 brain ops in 3 years she is in reception at school and doing well. I would definitely not want to suggest you google and it's very unlikely it's this as it is so rare but I'd want it ruled out.

I think, if you need reassurance, you should ask them if they see other babies with similar symptoms and whether they expect him to just grow out of it. Also ask what else it could be that is causing him to stop breathing. Ask if there is anything particular you should be doing at home. Finally, ask when you should get help if he isn't right.

For all the posters saying they would refuse to leave, how does it work in practice? Does the hospital just say, ok then, stay, and continue to provide medical care? Do they forcibly remove you? Do they let you be but not provide medical care?

As others have said OP, speak to your nurse and explain your concerns. Can they provide an apnoea monitor and SATS moitor to put your mind at ease at home for a few nights? Ask them what options you have other than being discharged and sent home. Speak to the matron and if need be ask for a second opinion from a different consultant.

Do you have a pen and paper op? or anyway of taking notes, remembering?

OP have a look at 'reflex anoxic seizures'

My eldest dc had these from age 4-9, they started out of no where and just stopped.

What you're describing sounds like RAS to me. Keep asking questions of the consultant, tell them your worries and fears.

Here is a link to the NHS page about RAS

www.nhs.uk/conditions/breath-holding-spells-in-children/

This is the link to STARS, an organisation that has lots of details and support for RAS
www.heartrhythmalliance.org/stars/uk/reflex-anoxic-seizures-ras

Are you in a recognised children’s hospital OP, or just a paediatric ward within a general hospital. Also, is the Consultant you saw a paediatric cardiologist or just one of the Consultant Paediatricians.
I can understand your anxiety, but equally I can see why they are wanting to send you home if your little one is seeming OK. In today’s NHS a bed is a bed, and they want you in and out as quickly as possible.
In your shoes I’d be anxious about leaving the hospital and I’d be wanting a follow up appointment sooner, rather than later to try and get to the bottom of the problem.
Do you live anywhere near a children’s hospital - I only ask because I had a (different) issue with my little one and happened to bump into a friend and her GP husband. We were discussing my baby and he suggested that I take him straight to A&E at the children’s hospital,
All I can say is that although I felt his advice might be OTT and I felt uncomfortable about walking into A&E with him it’s a good job I did. Outwardly there didn’t seem a lot wrong with him when we arrived but as he was so small we were triaged really quickly and within the hour we were up on a ward where we stayed for over a week. It took a fair few tests to diagnose the problem but the staff there inspired such confidence and I am truly grateful for the care and treatment he received..
If you end up being discharged from where you are now, and your son has another episode - would it be possible for you to take him to a specialised children’s hospital if that isn’t where you are at the moment.

agree with Milly - if they discharge you, I would take him elsewhere preferably a big children's hospital (assuming you are on a paed ward with specialised staff)

I'm just so tired and worried. I haven't got a pen and paper but I've typed bits and pieces to the notes on my phone. I'm in a children's hospital but not Birmingham or GOSH

Has he had an xray? My son was like this and it was a lung problem. Took two A&E trips and many HCPs before one actually decided to investigate. I went home the first time, he almost died. It was only on second admission that people started listening to me.

Whats his resp rate?

They're sending us home and apparently he will have an echo in 4-6 weeks. I don't know how to argue it so am going home.

OP- I absolutely understand why you are frightened, what happened would frighten anyone.

I am an Dr- not a paediatrician though. Very often the real issues in these situations is communication, not poor clinical judgement. In children, it is common to not have all the answers and it would not be reasonable to stay in hospital until there is an answer- you could be there for weeks and still not have an concrete answer. Please speak to the team looking after your DS and explain your fears. Ask them to explain why they think it is fine for your DS to go home and see if that explanation reassures you. If not, then explain that to them.

However, I agree with Lougle that there is a lot of people with little knowledge being OTT. All this talk of threats to hold people personally responsible "to focus their minds" is silly- all clinicians have to be responsible for the clinical judgements they make 100% of the time and we know this. Of course, mistakes are made as nobody is infallible but really, we have to keep things in perspective. Here we have what has been a self-limiting episode, after which he recovers fully. Tests so far have been reassuring. He has been seen by a paediatric cardiologist who is satisfied that nothing further needs to be done immediately. This is reassuring. Teaching CPR is there as an insurance- they have told OP that they do not expect her to need to use it. Staying in hospital until concrete answers are there is in all likelihood not warranted.

As for all the "just demanding this, that and the next thing" are not going to help OP or her DS. Things patient's demand sometimes aren't possible, wise or are waste of valuable resource which is needed more by another patient. So demanding things, when you don't actually know why or what for does not help. All this antagonism though does lead to a potential problem for OP and her DS because it sets up the possibility of defensiveness and poor working relationships with the team looking after her DS- this seldom helps anyone.

Defensive medicine is seldom the way to get the answers- it can lead to over-investigation and a whole host of other issues. I have been the Dr on the receiving end of these threats to hold me responsible (as I said, I already view myself as responsible for the decisions I make, as does the GMC and the law); threats to complain if you don't do x,y,z; patients or their family's who think threatening legal action etc is the way to get what they want (sometimes it does get them what they want, it doesn't always help them get the care they would benefit most from). Thankfully, it doesn't happen very often but it isn't pleasant and seldom helps the patient as the team caring for them are on edge. Therapeutic relationship often break down in these situations and I usually suggest they seek second opinion if things have got to that stage, as patients need to trust those looking after them and nobody works well with threats hanging over them.

In summary OP- I strongly advise you to speak to the team looking after your son and explain your concerns. Threats and demands that some have advocated are no substitute for proper communication.

We had an AngelCare monitor for DS when his breathing problems started and nobody was listening to me and they insisted on sending us home.

As a final note OP- I am not laying the blame for the communication issue on you. I am saying the issue is often a miscommunication, or lack of communication, between the clinician and the patient/family. Sometimes we don't get this right and haven't explained ourselves in a way the family/patient understands. Or we don't fully understand the patient's/family's concerns.

Which is why you should ask to speak to the consultant again and explain your fears. It may help to write down bullet points or a brief paragraph about each concern if you can't quite seem to get it out when you see the Dr.

I hope you find reassurance.

Just don't be tired of staying in hospital it's the safest place to be now that baby is like this love, infact tell nurses you're not confident to go home wen baby is in that situation
Wishing hima quick recovery

The OPs baby is a little young for breath holding

I understand wanting answers before going home - however if you stay this weekend and have a scan on Monday and that still shows no answers (which I suspect is going to be the case) are you going to be happy to go home?

I think the problem is that the team looking after OPs baby haven’t reassured her about anything. They may think they have because they’ve explained everything they’ve done and what the results show, but if she says that she isn’t reassured then she isn’t reassured and they need to do something about that. Before organising any tests or extra scans etc, they need to make sure that the mother of that baby is reassured that the medical team are not worried and why. It’s all well and good telling people that they’re being hysterical (which I agree lots of the responses are) but if the reason someone is being hysterical is because you have failed to convey to them that this is not a serious situation and that they as professionals are not worried, then you’ve not done your job properly. There might be nothing to be found, it might never be diagnosed, but they need to work harder to reassure the person who will be looking after this baby upon discharge, or they’re just going to see them again at the first sign of anything happening. If they have to explain it letter by letter then so be it, you can’t force someone to be reassured just because your knowledge is superior and you see much worse things happening every day.

How frightening op. I agree that you need the reasoning behind this decision to be communicated more clearly so that you can then decide how to proceed.
I would also feel very scared to leave hospital in this situation.

Can you borrow an angel monitor until yours arrives?

I definitely wouldn’t leave him sleeping in a quiet room without you, but equally I wouldn’t co sleep right now.

If you were my friend I’d happily stay & take turns staying awake at night. Some may say it’s bonkers, but whatever, if it helps you get some sleep I’d happily do it.