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.

Never mind what she says OP, trust your gut instinct. If she won't / can't reassure you tell them you want to switch consultants and that you will be referring the matter to PALS (and please do report it immediately to PALS). Tell them in plain English that you are NOT reassured and do NOT think it is safe for you to be sent home. What if you get home, he has an episode, you start performing CPR but he doesn't respond? You can't intubate him at home can you - he's come in with a symptom, it's unresolved, they can't send him home like that. The test results might be normal but surely during his in-hospital episode (did they have him on monitoring/ECG throughout?) they would have noticed something not right? Shouldn't they be carrying out an echo-cardiogram straight away to establish what the problem is before sending him home for the same thing to happen again???

Just want to say I had this for years as a baby - I had a kidney problem and needed an op but was not serious. So agree could urinary tract related.

@Rubica what do his one do during one of his floppy episodes though? You say he turns blue and stops breathing when it happens?

@MissingSilence closed eyes, very floppy, turns blue very quickly, stops breathing then after I rouse him a bit he wakes up after 30 or so seconds and goes fairly back to normal. They've said he might not do it again. I'm scared that we will go home, he'll do it again and won't wake up.

They don't seem to understand how devastating it is watching your son die. In that moment that's what I thought had happened.

@Rubica I would guess his oxygen levels drop on the monitors and heart rate too? Either way, from what you describe I wouldn’t be happy to go home. I think as other people’s answers demonstrate there are so many causes. I would want more tests and certainly an ultrasound of the heart. So sorry you’re going through this, I can’t imagine how scary it must be. It just doesn’t seem right to me that they want to discharge you. Please keep us updated x

@MissingSilence they have said his heart rate and oxygen levels looked normal but I could see with my own eyes that his oxygen dropped to 70. When he had his episode downstairs his heart rate went over 200 and oxygen went down to 60. I'm not making it up. I don't think I'm going mad either. But because I'm not a medic I sound like a broken record asking for more tests. When they say 'well what tests would you suggest' I just look like a complete lemon because I don't know.

I would not be happy leaving either, what if it happens when you're asleep and therefore you can't rouse him to get him breathing again? They can't expect you to not sleep.

If he has no fever accompanying these episodes then it's unlikely to be any kind of infection.

I'm with you OP, it's just not worth the risk and if you have to be 'that parent' and kick up a stink and be obstinate and say NO multiple times then that's what you have to do. I would not want to be at home with a baby that kept doing that AND I had not been told what the problem was. They clearly don't know yet and should be completing all the diagnostics required before your son is discharged.

What are you going to do to get the planned discharge decision reversed??

My preference would be the u/s before discharge.

Are they well otherwise any other symptoms that could point to something? A type of malacia maybe, not likely if there are no other symptoms though. What have they told you they have excluded?

His oxygen and heart stats are evidence that there IS a problem.

When they say to you "What do you suggest" you say "What do YOU suggest - you're the medic - what tests would lead to a diagnosis?!? I'm not going home until you have this sorted and stop ignoring oxygen stats of 70, a heart rate of 200 and blue limbs! How about [choose any he's not had yet] echo-cardiogram, ultrasound for starters. Or I can ask for another consultant or refer it to PALS"".

Agree you shouldn’t just be sent home. I know they need the beds, but tough that isn’t your problem, your son needs one too, so you should refuse to leave. If they try to force you to go home, say you will be putting in a complaint and holding whoever makes you go home, personally responsible if anything happens to your son.
Hope you get some answers soon and everything okay with your little boy.

Never mind what she says OP, trust your gut instinct. If she won't / can't reassure you tell them you want to switch consultants and that you will be referring the matter to PALS (and please do report it immediately to PALS). Tell them in plain English that you are NOT reassured and do NOT think it is safe for you to be sent home. What if you get home, he has an episode, you start performing CPR but he doesn't respond? You can't intubate him at home can you - he's come in with a symptom, it's unresolved, they can't send him home like that.

This.

I would request to speak to someone from PALS before agreeing to leave and express your concerns to them. Maybe mention that if you go home and anything untoward happens you will seek legal action. Might focus their minds?

With those observations during the floppy episode he absolutely should be kept in. They need to find a cause. Be “that” parent because you’re never wrong when you advocate for your child. If it all turns out to be nothing in the end, you’ve not lost anything by staying in for a few more days. I would ask to speak to the ward matron today x

@HoppingPavlova he's absolutely fine. He has been a bit grumpy but also had spells or being really happy and chatty in between episodes.

They've excluded certain heart problems and that's about it. But I don't know what else it could be or what else they should be looking to exclude. I'm scared it might be something to do with his brain. But I don't know I have no idea what causes this kind of thing.

I would ask them:

"If this was your baby, would you be happy to take him home with no explanation of why this is happening?"

Have they done bloods to rule out infection?

@Lifeisabeach09 they just did a heel prick but haven't done blood tests. They said he has no fever so unlikely to be infection.

My little boy has had exactly the same thing - it is absolutely terrifying and I also thought he was dead the first time. How long do the episodes last?

When I have gone to hospital before all tests have been normal and they have clearly thought I was an over anxious mother. You need to stand your ground with this if you feel it's wrong. They also called it a brief unexplained incident with my DS and said it would be something he grew out of. I would recommend getting an apnea mat for at home. I didn't know how I would ever sleep again but this helped. Best of luck x

They're basically saying they don't know what the problem is. Not reassuring at all. Have you seen a senior doctor?

The woman we saw was very senior. She was a specialist too. How can I argue with that?

"If this was your baby, would you be happy to take him home with no explanation of why this is happening?"

I would be saying this on repeat!

Also “you’re the professionals , I want answers and help for my baby, I am not going home yet”.

My eldest son has done this since he was born. Literally hours old when it first happened. He's nearly 4 now and although it's few and far between these days, it does still happen on occasion and we've still never got to the bottom of it. Apparently he'll grow out of it. Like yours, he comes round on his own every time. We were told to call an ambulance if he was ever out for more than 60 seconds but that's never happened. Usually 30ish at most.

Obviously if you're unhappy with what they've said then push for whatever tests or steps you feel are necessary. But it really could just be one of those things.

Actually it’s quite common for hospitals to teach CPR as it’s what you can do to help until the ambulance arrives, those minutes are vital.

I’m afraid as a children’s nurse then it’s really normal to not allow babies to sleep in the bed with you in hospital, especially after the events you describe, it’s just not safe. Your baby needs to be in a cot where the staff can get to him in an emergency and next to the emergency equipment.

However if you aren’t happy about being sent home then you need to chat to your medical team and nurse who is looking after you. You’ve had a scary time and are rightly concerned about another BRUE occurring.

Maybe his oxygen levels are dropping to 70, but we look at the child not the monitor. There’s more to it than just reading the number on the screen, if the probe is picking up correctly, colour of the child etc. There’s a lot of dramatics on this thread, ‘medical negligence’ and refusing to do things. If you aren’t happy and are worried still then talk to your team.

Just wanted to add that sometimes there really is no explanation for these things, and it doesn’t mean the medical staff haven’t done their job properly.

How frightening i wouldn't be happy with that , the first thing that popped into my head was seizures , has he had an eeg? If not I'd request one for you x