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.

I wouldn't go home until I had more tests. Your poor baby has stopped breathing 3 times and they're saying this is normal and not to call an ambulance are they effing kidding?! they cannot guarantee your baby will come round by himself every time and things like this don't happen for no reason. I wouldn't leave until they found out what is causing it. I feel so sorry for you this is not fair on you or baby. I'm trained in CPR but you can't guarantee that it will bring someone back! I hope you stay and refuse to leave and you find out why your baby is having this episodes. Did they test for epilepsy?

There is a lot of hysteria on this thread, which isn't helping. You've had tests to rule out fundamental heart issues, which is good. You know that his episodes are self-resolving, which is excellent. You are his very best carer, and hospitals are places where you can pick up infections, so it's better to get patients out as soon as it is safe, which it is.

You don't need an oxygen saturations monitor or a heart rate monitor to tell you if your DC has collapsed. You can see it. It doesn't matter what the oxygen levels go to or the heart rate climbs to, as long as breathing returns on its own. If for some reason it didn't, you would start CPR. I'm not being blasé, but that same process would be used in the hospital.

If you need more reassurance, talk to the team, but it might be unrealistic to insist on staying until 48/72 hours without incident, especially if these apnoeic episodes are going to continue.

Do the episodes occur when he is lying flat? Are you breast feeding?
My Daughter frequently used to stop breathing when laid down.

They couldn't find any reason.
I basically held her upright for 6 months.
At 6 months we found out she had severe silent reflux caused by multiple critical food allergies that she was exposed to through my breast milk.

I hope you find some answers soon.

Thank you @Lougle - please understand that I might also be a bit hysterical. This is only because it's terrifying to think your son has died and it's so hard trying to accept I may not ever have an explanation.

No I wouldn’t want to go home either. ‘Resolved unexplained event’ - I would ask how can they say it’s resolved if they don’t know what has caused it.
To ask you ‘what tests do you suggest then’ I think is disgusting and bordering on bullying. How can you be expected to say? They are the doctors they should be using their expertise to determine this. Tell them you’re not comfortable to leave as you don’t think it’s been resolved at all yet.

I think that you should stay there till your monitor has arrived. I don't think you'll sleep a wink till it has. I'd also push for a second opinion at a different hospital. You need to feel that this is all there can be done now.

I'm just scared I'm wrong and that I would be putting him through unnecessary testing. Someone mentioned a brain scan and nobody else has mentioned it. I just don't know what to think.

"You don't just rely on just the numbers" @IAmWonderWoman? So the child turning blue and becoming semi-conscious, that wasn't a clue that something was wrong...? Jeez. Medical professionals make mistakes all the time - ALL THE TIME and children have been turned away from care and then died, that's a fact that we're all aware of. Sometimes the only thing that has saved that child has been the parent(s) insisting strongly that the Dr take another look.

Please Lougle don't tell PPs on here that they are being 'hysterical'. I'm perfectly calm. As this thread has developed OP repeatedly seems more concerned about the clinician's greater medical knowledge (it can be intimidating, I do get that) and with challenging the clinician's opinion in the face of an undiagnosed problem that causes observed changes in her baby's heart rate, oxygen sats and circulation.

Sadly in this world even the most gentle unconfident person has at some point (and definitely if in relation to advocating for their own child) to step outside of their comfort zone and actually stand up and do whatever is necessary to protect their child in whatever the scenerio is and having expressed concerns on here, OP clearly isn't reassured and needs to do something to get that reassurance - just "we don't think it will happen again" is not good enough - on what basis do they say that?

No matter what's been said to OP so far (and I appreciate she's in hospital and in a difficult situation at the moment and very very worried) is to keep repeating that she can't challenge the Dr's and she has ignored and not responded to advice to do that, to contact PALS, to ask for a different consultant, to refer to a matron.

@PanannyPanoo one time I was trying to feed him but he was being fussy, the second I was holding him upright, the third he was laying flat next to me and I was watching him.

Lougle

Yes, OP could start CPR. But it might not work and in hospital they could rapidly intubate - OP cannot do that at home.

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?! That's just crackers!

I don't want to argue with anyone. Just want to feel confident in my sons treatment which I'm not

I don’t want to worry you but they should be doing an echocardiogram at the least. My daughter (15) was born with tetralogy of fallouts, she wasn’t diagnosed until a few days old. She was checked over at hospital when born, they said she had a slight heart murmer but discharged us anyway. She kept having these episodes were her breathing wasn’t right, she’d become purple and floppy, scream, projectile vomit. When she was about 2 days old me, my mum (I was only 15 myself) and step dad just knew she wasn’t right so took us to A&E. They ran a few tests there, admitted her to a ward and she kept having these episodes where she’d go purple/blue and her SATS kept dropping. By 2am she was admitted to intensive care and we were told she wouldn’t make it through the night. The next morning they did an echocardiogram which was video linked with John Radcliffe hospital where she was diagnosed with TOF. We were blue lighted to the JR and she had life saving surgery that day. It was horrendous, the first two years of her life were a series of operations, worry and fear. She’s fine now, will possibly need another operation but we won’t know yet. But had we not had the echo she wouldn’t be here. Please please insist on further testing.

Really surprised at the 2 suggesting you are hysterical. It would be a bit weird if you weren't.
As another healthcare professional, I would say no way would I go home, and no way would I trust the staff either really until I had an answer. I see doctors and nurses miss things all the time where I work, not through negligence, but just the answer not being obvious.
I would just use my fear to give me the strength to say I am not going home until this is resolved or at least until be is 48 hours clear.

*Fallots not fallouts

I will readily admit that I'm hysterical. I'm a complete mess. He hasn't had an episode since yesterday afternoon but he wasn't monitored overnight and I did sleep for brief periods. How am I to know whether it happened last night or not? Im by the window, the people next to me had the curtain drawn all night. The staff were not actively watching him.

OP you must be so worried. I would speak to the Consultant and say without a diagnosis you cannot be reassured and if they cannot provide one they should refer on. I would not be happy to be told a baby stopping breathing is “one of those things” that is no diagnosis.

Have they looked into cyanotic breath holding episodes?

@SchrodingersUnicorn I presume not because I have no idea what that is..

I'm not suggesting that you, Rubica, are hysterical. I was saying that the thread in general is a bit hysterical. There is no indication, so far, that your baby needs intubation. Intubation is a long way down the line of interventions that can be given for breathing difficulties, anyway, but it doesn't sound as though your baby has any issue with breathing itself, when he's doing it. What he's doing is either 'forgetting to breathe' occasionally, or for some reason he has stopped breathing. But our bodies are really clever, and when the carbon dioxide level rises in our blood, it gets sensed by the brain, and that triggers breathing. It's like a 'failsafe'.

So I'm not trying to downplay your concerns, I'm trying to say that you need to listen to the medical team who have no interest in putting your baby in danger, but perhaps have not explained properly why they aren't concerned. Ask them to explain why they think the episodes are self-limiting.

Definitely do not leave the hospital, I would also be hysterical.
I really hope that they get to the bottom of this

"How am I to know whether it happened last night or not?"

But if it happened, and he's there beside you fine this morning, then that tells you that the episodes were self-limiting and resolved without intervention. If they didn't happen, all good, too. So be reassured.

Thanks @Lougle - any suggestions or questions I should be asking? I know you don't know my sons situation but I am really not thinking straight and feel annoyed every time I see a consultant because I can never seem to express myself properly.

I don't know much about it either, just my friend's baby had it and it sounded really similar to what you're describing. I'm no medical expert though! Maybe worth a Google though to see if it looks possible? It looks scary but isn't serious from what I remember x

I would refuse to go home until you have a SATs monitor in place.

I wouldn’t be going home until
I knew what was wrong with him. No way.