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.

Sending lots of love and healing thoughts to your son. And to you and your family too.

Sending love OP. Hope he's improved again today.

Hope things are improving OP

@heyjoeyitsestelle hope your darling boy is well on the way to recovery now.

I hope your son is rallying OP.
With love.
Xx

How are you all OP??

Hey everyone. Ah thanks so much for thinking of us.
It looks like we may have finally turned a corner 🤞🏼. His numbers had a blip over the weekend and went up- but have now today more than halved. The fluid round his heart is still there but has definitely reduced.

So the current plan if he continues is- he's having a PICC line inserted on Friday (under general anaesthetic- which I am currently just trying not to think about!) and then hopefully home to have IV antibiotics administered at home. Then come back in for bloods every few days and regular echos.
His IV antibiotics are going on until something like the 20th feb- which is crazy. But hopefully by the end he'll be right as rain!

It's his birthday next week so hoping this all goes to plan 🤞🏼😊

Oh that sounds really positive. Good.
Hoping that by his next birthday this is all a bit of a blurred memory!

My DS had a PICC line put in under GA. it was quite quick, a couple of hours and it wasn't as bad as I thought it would be. He also had long term antibiotics that did seem to go on forever. Will you have to go to hospital for them or will someone come to your home?

@YouBoggleMyMind
Oh thanks- haven't been given much info about the actual procedure yet. I just know I'm going to be a bit of a mess. My husband isn't worried- tho he's never been a worrier. But just the thought of him being wheeled away and put to sleep is filling me with dread!
No they're sorting an OPAT team to do it at home. I'm also pushing the option of my mum doing it at the moment as she's an nurse. So they're going to look into it.
Do you mind me asking if you work? And if so did you stay off for the duration of their antibiotics?

Ah the OPAT team are magnificent. We were meant to have the same but due to the type of line (it was personalised to my DS) we had to go into our local hospital everyday for IV ABs. I was on maternity leave as DS was only 17 days old when he was ill. My DH was put on special leave. We spent 7 weeks in a hospital 90mins from home and finally got discharged and had daily trips to our local hospital for the ABs. He actually has a cardiac review tomorrow and I am nervous!

I don't want to over take what is happening to you, I really wish it wasn't but my DS had sepsis, meningitis, a stroke, infective endocarditis and 2 open heart surgeries with complications after. He then had this PICC line put in for his IV ABs so I 100% understand exactly what you're going through and how you feel. If you need anyone to talk to, through anything or just a e-hug, I'm here for you.

Also, excellent username, I LOVE Friends!

My daughter had to have a general anaesthetic at 6 months old and I thought I'd be a mess, but they let me stay with her until she fell asleep. A nurse came to tell me all had gone to plan, and then I was allowed to be with her as they brought her round.

He will be fine and so will you! Glad he seems to be on the mend.

Awful situation, I would've utterly crumbled glad to hear that it looks like the worst is over. All the best to you and you little boy X X x

Good to hear that your little boy is improving OP x

I hope that he is home very soon now.

Just thought I'd update you all. My little boy is home 🥳🥳🥳 came home yesterday and we all couldn't be happier.
Nurses came out today for his IV which was great (even if I struggle with small talk for half an hour while they wait for it to finish 🤦🏻‍♀️)

He's doing great, he's laughing and crawling all over the place- back to his normal self. Waiting for his appetite to pick up but he slept great and we've enjoyed so many cuddles.

So so happy to be home with my little girl too.

Wonderful update Op! Enjoy all being home together.

First time I've seen your thread OP
But so glad to hear your little man is home and doing well
I hope he keeps getting better and hope your DS is feeling a lot happier now she's got her mum home as well

Virtual handhold to let you know you are not alone. Thinking good thoughts for your son.

Just saw your update! Hurrah!

What a fantastic update.

Wonderful, so pleased.

:o

Wonderful news!