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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To not want to leave hospital just yet?

103 replies

Rubica · 17/02/2019 07:50

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.

OP posts:
IceRebel · 17/02/2019 07:56

has had repeated episodes (x3) of turning blue, stopping breathing and going floppy.

3 times he's stopped breathing and they want to send you home Shock

No I wouldn't be happy, and the fact they've taught you CPR isn't reassuring. Knowing how regularly he seems to stop breathing, (twice in 48 hours if i'm reading the OP correctly) it would bloody terrify me.

I wouldn't want to go home, 4 month old babies don't just stop breathing for no reason. Angry

SpanielEars070 · 17/02/2019 07:57

Can you talk to one of the nurses to say that you're really not confident about going home with him like this? It's really frustrating that not a lot happens over a weekend, but I'd want the reassurance that the scan would be done fairly quickly.

Hope your little boy is better soon.

Original poster
Rubica · 17/02/2019 07:58

@IceRebel it's 3x in 48 hours. Twice at home before the ambulance arrived, then the next day in hospital. They're calling it a brief resolved unexplained event. I'm not convinced at all though.

OP posts:
Hassled · 17/02/2019 07:59

If they're going to send you home they're going to need to give you a lot of reassurance, and it doesn't sound like they've done that. No wonder you're scared.
Is there someone there you can ask to talk to so you can explain how you're feeling?

Roughday · 17/02/2019 08:00

Im airy for what you are going through op , it sounds horrendous and so worrying .
Di he need to be resuscitated at all when going blue/ stopping breathing ?

I think either way you are right to be worried and if it were me I wouldn’t leave that hospital without answers.

FudgeBrownie2019 · 17/02/2019 08:00

I think I'd request the heart trace be done before leaving hospital. I'm aware that hospitals are madly busy and there are huge pressures on staff to make beds available but I'd still try and request it.

Flowers op, I hope you've managed a little rest while you've been in with him.

Roughday · 17/02/2019 08:00

I’m sorry **

Littlebird88 · 17/02/2019 08:01

no.chance. you need to ask to see the consultant paediatrician and explain your concerns.
they simply by teaching you CPR are moving the responsibility to you which is awful.
hope you can get somewhere

MissingSilence · 17/02/2019 08:01

No, I wouldn’t be happy at all and I’m a paediatric nurse ...
I would ask to speak to the consultant or ward matron and request to stay the weekend (with him on continuous monitoring)

Original poster
Rubica · 17/02/2019 08:04

@MissingSilence they seem reassured that he comes round by himself and his obs were pretty normal for 24 hours. He's also completely normal between events (in the eyes of the nurses, I knew he wasn't himself). He seems fine now. Happy and giggly. But then it happened again yesterday. It's just so hard to advocate for yourself when you're not medical.

OP posts:
Original poster
Rubica · 17/02/2019 08:05

@MissingSilence they didn't have him on monitoring last night, and then the HCA told me off for having him in my bed because of SIDS risk. I didn't feel safe having him in a cot bed where I couldn't see him.

OP posts:
Original poster
Rubica · 17/02/2019 08:07

@Roughday no resuscitation needed thank god. He came round by himself every time. I'm scared it could be a brain problem but they don't think a scan etc is necessary. I'm not medical so don't know.

OP posts:
fargo123 · 17/02/2019 08:07

No, I wouldn't be happy with this at all. I would refuse to leave until my baby had been episode free for at least 48/72 hours and/or they could ascertain what was wrong and what care was needed.

Not quite the same, but after the birth of DC2, I was literally minutes from dying and was unconscious for the next 24 hours. They wanted to send me home two days later. I refused and said there was no way I was physically ready to go home yet. I ended up staying another two nights. If it was literally life and death involving my child, there's no way I'd be leaving until I was convinced things were safe to do so.

Sending you home with an undiagnosed problem and instructions on how to do CPR is medical negligence in my view.

Original poster
Rubica · 17/02/2019 08:08

They said they don't think he will need the CPR and that it's for my reassurance only but it hasn't reassured me.

OP posts:
Blondephantom · 17/02/2019 08:08

Are they sending you home with an apnea monitor? At least this will alert you if there is a problem. My daughter had a cardiac arrest when she was small followed by repeated events. The alarm was invaluable. Sometimes they can’t find a cause. They didn’t for my daughter. I would push for a monitor and to stay until this has arrived.

Original poster
Rubica · 17/02/2019 08:10

@Blondephantom sorry that happened to your daughter. How scary. I've ordered a monitor myself but it won't arrive today as it's Sunday. Tuesday earliest.

OP posts:
Osirus · 17/02/2019 08:11

I think when you do go home you should get one of those baby mats that go in the cot that have an alarm if the baby stops breathing. Oh, and never sleep again!

YANBU. How terrifying for you.

IceRebel · 17/02/2019 08:11

They said they don't think he will need the CPR

They don't think isn't very reassuring language.

I don't understand the logic in sending you home, if he's had 3 episode in 48 hours surely there will be more. You will call an ambulance, and end up back where you are now.

Original poster
Rubica · 17/02/2019 08:12

@IceRebel they've said if he does have another episode no need to call and ambulance as he comes round by himself but to call their number instead for advice.

OP posts:
colourrunruinedmyhair · 17/02/2019 08:14

Is it the consultant you’re dealing with? Ask to speak to whoever is coordinating or the matron on call.
They can’t really say it’s one of those things and teach you CPR because it’s a new symptom.
He’s never had it before so it’s not something he’s had since being born.
Try to get this across to them.
Tell them you’re not happy to leave until he’s been properly tested. Has he had an ECG done - don’t let them tell you they can’t do them in babies, they can.
Also you could request that they do a chest x Ray if they haven’t already.
If they’re adamant you have to leave make them aware that you will be contacting the paediatric matron first thing on Monday to make a formal complaint and tell them you want open access to the ward. Which means you get to go straight to the ward without going through a&e if it happens again.
One final thing is you could ask for them to refer / admit you to a children’s hospital locally and transfer you across.
They clearly don’t know the cause and shouldn’t be just sending you away. You could say you want to be transferred to a cardiac ward at a children’s hospital.

Jellyfloodagain · 17/02/2019 08:16

I wouldn't be happy being sent home either.

Original poster
Rubica · 17/02/2019 08:18

@colourrunruinedmyhair yes she's a consultant who specialises in cardiac problems. I don't feel equipped to argue. They did an ecg after the last episode and it was normal. Everything looks normal I don't know what's going on.

OP posts:
sighrollseyes · 17/02/2019 08:19

My friend had this with her baby about the same age as yours. Don't know the medical connection but he turned out to have a urinary tract infection. Treated all fine never happened again, now 3years old.

Original poster
Rubica · 17/02/2019 08:24

@sighrollseyes that's good to hear - that it wasn't anything super serious. I'm so worried I feel sick.

OP posts:
anniehm · 17/02/2019 08:26

My dd went floppy rather than blue - she has a form of seizure it turns out (luckily touching wood she's been free since puberty)

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