My son has meningitis and I'm trying to hold myself together

[heyjoeyitsestelle]

Fever since Monday- no other obvious symptoms. Took to A&E on Thursday as started shaking and grunting when temp spiked. Told probably a virus and sent home and to bring back if he still has a fever in 4 days. No bloods or tests done.

Took him back Saturday as I just knew he wasn't ok. Made them do bloods, chest X-ray and urine sample.
His CRP was 270! He was admitted and thought was probably a bacterial infection so blood cultures sent off and given a dose of antibiotics.
Didn't improve so doctor did a lumbar puncture to rule out the '10%' chance it was meningitis...

And it is. My poor baby has meningitis. He's 11 months old and I'm so so lost right now. They think it's bacterial but appears to be somewhat mild as the white blood cell count was 8.

I don't really know what all this means. As all I hear and think of are horror stories.

How do people cope with this? I can't sleep or think straight. And I miss my daughter at home.

That’s super unlucky OP he must be in the tiny percentage that vaccines aren’t 100% for but I really hope he’s on the mend soon you never know perhaps being vaccinated did help and he will do better by having even a smaller amount of immunity maybe his body can fight off some of it ?
Really hope he’s better soon x

Hi OP I was just wondering how your little boy is doing now?

@TheMostHappy
Thank you for asking

We're still in hospital. He was diagnosed with haemophilus bacteremia with aseptic meningitis last week, however he wasn't responding to the antibiotics- so on Friday they ordered all different tests.
Unfortunately his echo showed that the infection has spread to his heart and he was diagnosed yesterday with endocarditis (which is super rare so everyone keeps saying so my poor boy has been really unlucky)

They're currently monitoring him with daily echos to watch the fluid round his heart. The infected tissue there isn't on/near a valve which is good.

The infectious disease team are waiting for more results but seem pretty confident it's not the hib strain, so not an issue with the vaccine.

He's currently looking at 4-6 weeks of iv antibiotics. He's on diuretics to try reduce the fluid around his heart, and aspirin to try and prevent clots breaking off and going to other nasty places.

Hopefully his numbers improve and the fluid decreases and we can finish the antibiotics at home. But looks like we're here at least another couple of weeks.

Currently struggling immensely with the guilt of leaving my other daughter. She's been great but she wants mummy home. DS has perked up in himself the last day or so, so hoping to stay home all night with my daughter one night over the weekend.

Sorry. Realise that's a huge essay. We only got the endocarditis diagnosis officially yesterday, told not to google but only use nhs website. But even the info on there doesn't fill you with confidence but they've caught it early which is the main thing.

Oh my goodness heyjoey what a nightmare!
glad to hear that you are in good hands tho - a diagnosis gives them something to work with.
really hope things improve for your DS as the days goes by

don't worry too much about your DD - how old is she? Is your partner at home with her?

also take care of yourself

Thinking of you op. As others say. He's getting the care he needs. Thank goodness for the NHS in times like these.

So sorry OP well done for trusting your instincts early on. Wishing you every strength

Thinking of you

He is in the right place and you caught it early

Both my brother and I had meningitus as adults and it was very scary, we were both very ill, but thankfully both recovered and are OK x

@NiteWotcha
She's 5- so she's in school all day which helps. She went to her best friends for tea Tuesday and she's going again tomorrow after school.

Yeah she's home with my husband. So some nights I have put her to bed and then come back here. Others she leaves the hospital and goes with Daddy. Last couple of times she has sobbed when I've left though- just wish I could split myself in 2.

She actually clung to me leaving the hospital the other day. Sobbing. As soon as the doors closed I was sobbing. And tonight she was in bed when I left but obviously still awake, and she was crying in the bloody window as I drove away. I feel so so drained.

@Casino218
Indeed. They have been amazing since we've been admitted. The hospital is fantastic.

Oh, I really feel for you, I hope everything will be o.k take care of yourself.

That sounds so difficult op, I really feel for you, both kids just want their mummy but try to think this is just the short term, in the future you will all be back together again and cherish it much more than you already did before. I hope your son recovers quickly from this and luckily he's so young he won't remember it.

Hi OP, I replied to your other thread re: endocarditis.

I hope you're doing as well as you can in these scary circumstances. I really feel for you, it's heart breaking.

Hi OP, how is your son doing today?

I really feel for you - my little boy had meningitis when he was 9 months old and it was a very scary time. He is absolutely fine now and it sounds like your little one is getting the right treatment and being well monitored. Hope things are improving today.

Well done for taking him back & pushing for more tests. I can’t believe they’re not routinely testing for more when babies are initially brought in.

I hope the new antibiotics really do their job well & hes well enough to go home soon.

It’s very hard on DD, but at 5 she should be able to understand that DS can’t be left on his own in hospital & that if she was in hospital you’d stay with her - that it’s not him him v her, you don’t love him more iykwim.

When you get him home you’ll be able to let DH look after him while you spend time with her & it’ll all be ok. Promise.

So sorry you're going through this op and keeping my fingers crossed he only improves from now.
Just a positive story, I had bacterial meningitis at 18 so over two decades ago now and was very very ill, but made a full recovery.

Hi op, just wanted to send over my well wishes! My nephew had it as a baby and has recovered well! Like the previous posters have said, well done for taking him back in when he was still poorly! Hope your daughters OK now.
Hope things turn a corner soon!

He has picked up over the last few days. The meningitis was apparently the least worrying of his problems as the wbc in the fluid wasn't massively high.

This endocarditis is quite serious but the pericardial effusion (fluid around his heart) does appear to be decreasing now he's on the diuretics. I made the mistake of googling it and had a bit of a meltdown. But he does seem to be improving in himself even if clinically on paper he's got a way to go!

Fingers crossed. Love to you all.

What a rollercoaster OP, am crossing my fingers and toes for your little boy 🤞🏻💕

I’m glad he’s improving in himself -it’s bloody awful seeing them so limp and glassy eyed.

Yeah, they say DON’T google fir a reason! But seriously, people are going to aren’t they.

DrGoogle isn’t good for your blood pressure though, he’s a negative nelly!

Sending love and positive thoughts that he continues to improve 💕

.

How's he been today?

I wish your baby a speedy recovery Op and I hope you get a chance to spend time with your little girl too