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Premature birth

Connect with others and find premature birth support.

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Original poster

RSV Bronchiolitis

16 replies

hugr · 22/12/2021 09:09

Been in hospital already 9 days for RSV bronchiolitis 😞 hes not needing oxygen when awake but is plugging with mucus when asleep and desaturating and I just can't see us being home for Christmas.

He was born at 26 weeks in May and had such a tough time in NICU, but came home without oxygen in September.

He's been in hospital for more of his life than at home. He doesn't deserve this and I just want to be home for Christmass!

Doctors are just saying we have to wait for his nose to clear but he's day 12 of illness already. Anyone else looking at a hospital Christmas? We are on a normal paeds ward so my husband can't visit.

Anyone else had trouble with mucus plugging? What helped?

OP posts:

NotMaryWhitehouse · 22/12/2021 19:03

No advice (other than, snot sucker?), just sympathy really, that sounds so hard on you all

What have the hospital advised?

Original poster

hugr · 22/12/2021 20:01

@NotMaryWhitehouse

No advice (other than, snot sucker?), just sympathy really, that sounds so hard on you all

What have the hospital advised?

Haha we are well acquainted with the snot sucker! They were suctioning his mucous but want to avoid doing it too much as it can paradoxically create more secretions thus more mucous. We are giving regular saline nebuliser and drops to loosen it.

He's had a really good day today, his nose started to stream which indicates that the blockage might be moving. Still needing a little bit of oxygen when asleep but altogether a better day!

The ward have also said (provisionally) that if he's still in on Christmas then his dad can come in to see him with a negative lateral flow. Feeling a bit better today but the nights are the hardest.

OP posts:

Original poster

hugr · 22/12/2021 20:04

But what the doctors have said is that it's just a case of waiting for his nose to unblock, and there's not much we can do to speed it along. They think he's taking a long time to recover but it's not abnormally so.

OP posts:

NotMaryWhitehouse · 23/12/2021 10:15

Fingers crossed for you all to be at home on Christmas Day! Sound likes he taking good steps forwards.

NotMaryWhitehouse · 23/12/2021 10:16

And yes everything is always harder at night, isn't it?! Sends me a bit doolally.

Hm2020 · 25/12/2021 13:41

Hope you got home for Christmas have been in hospital nearly every December with chest related issues he’s 7 years old and we seem to have avoided our usual admission this year.

Original poster

hugr · 25/12/2021 18:34

Still here! Have had an okay day though 👍

OP posts:

Sirzy · 25/12/2021 18:38

Hope you make it home soon and can have a second Christmas.

Ds was a bronchi baby so I get how tough it is.

If he is well other than dropping o2 when asleep is him coming home with o2 a possibility?

Original poster

hugr · 26/12/2021 04:14

@Sirzy

Hope you make it home soon and can have a second Christmas.

Ds was a bronchi baby so I get how tough it is.

If he is well other than dropping o2 when asleep is him coming home with o2 a possibility?

Nope, I've asked about this and they've said as he's not at his baseline it wouldn't be safe to come home on oxygen!

OP posts:

SherryPalmer · 26/12/2021 04:25

My premature baby caught RSV - then had bronchiolitis - then bacterial pneumonia at 2 months old. He spent two weeks in NICU, including some time on a ventilator, but after discharge he hasn’t seen the inside of a hospital since and he’s now five. This will have been a horrible Christmas for you but soon it will be a memory. Hope you can reschedule some Christmas celebrating for when he’s feeling better.

Original poster

hugr · 31/12/2021 17:41

Still here 😞

OP posts:

Sirzy · 31/12/2021 17:48

What a nightmare? Have they managed to put in some sort of plan yet? Is it still just night that is the issue?

Original poster

hugr · 31/12/2021 21:50

@Sirzy

What a nightmare? Have they managed to put in some sort of plan yet? Is it still just night that is the issue?

The plan is just to wait until his mucus clears up! Yes it's the same, off oxygen in the day time but needs it once he goes to sleep.

We made a fuss today and they are going to make contact with a respiratory team but I fear the respiratory team will say the same thing. We've negotiated my husband visiting more often and he took over one night. They have also put him on more antibiotics in case there's another infection underlying.

OP posts:

NotMaryWhitehouse · 31/12/2021 21:50

Oh you poor things! Have the doctors given you a timescale for getting home? Feel for you.

Hm2020 · 02/01/2022 11:52

Sorry to see this op must be so hard to be
Going in to the new year in like that. Hope the antibiotics start working and your home soon

Original poster

hugr · 02/01/2022 21:39

Thanks. The doctors are trying to see if we can go home on oxygen but I'm not convinced he will be able to, because the main issue isn't that he needs constant oxygen, but that he stops breathing momentarily because of the mucus plugging when asleep.

I was talking to the nurses about how he used to have reflux so they are trialing gaviscon and omeprazole, because silent reflux can cause nasal congestion and he's quite a vomity baby.

On the plus side he is very much enjoying his time in hospital being cooed at by all the staff 😂 and my husband has been allowed to swap with me tonight, but I'll go back tomorrow!

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