Possible endocarditis 11 month old

[heyjoeyitsestelle]

I posted a few days ago about my son (it won't let me open the thread again annoyingly)
He was admitted to hospital last Saturday following 6 days of high fever. They did a blood test and his CRP was 350.
Anyway- after what felt like forever. He was diagnosed with haemophilus bacteremia with aseptic meningitis. Scary stuff. Been on antibiotics since admission however his CRP dropped and then went back up again- currently 270. He's still getting the fever and the antibiotics just don't seem to be working.

After a 'wait and see' approach- hoping he would show symptoms of infection elsewhere- his consultant and the infectious diseases consultant decided to run further tests. One of which was an echo.

The echo was done on Friday following a chest X-ray which apparently showed his heart was enlarged. The echo showed there is fluid around the heart and what looks like an abnormality.
He is currently taking furosemide to hopefully reduce the fluid so they can get a better look. Echo being repeated tomorrow.

I am in bits currently. And I don't know what this all means. But I know before testing his regular consultant mentioned endocarditis as the reason for the echo but said it was highly unlikely. But here we are.

Anyone know anything about it? Can anyone please please put my mind at rest - even if just for a few minutes.

Can't help, but here's a hand hold x

Anyone?

So sorry you are going through this - no experience to share of this condition but wanted to post

How is everything today?

All I can add is are you at a specialist hospital? Main Children's hospital, if not I would ask for a second opinion or to be transferred to GOSH or Southampton if in south or similar hub in north.

Thinking of you -

@lampplease
Thanks for replying.
He's perked up somewhat today. Re done the echo and still fluid around it so he's on more diuretics and re scan on Tuesday.

We're at alder hey children's hospital 👍🏼

So glad to read you are at an excellent hospital.

How is everything today? It must be such a horrid time for you, is there any improvement?

@lampplease
He seems to have perked up a bit last day or so. Numbers are still high but slowly coming down.
Another echo today shower fluid still there around heart so we are now waiting to see the consultant.

My DS had infective endocarditis at 4 weeks old. It was a complication from what started out as a UTI that spread due to being born with posterior urethral valves. The infection seeded and spread to his heart, his mitral valve specifically. He has surgery to remove the infection and repair the valve and then had a second lot of surgery a week later as the first repair didn't work. At the time we were asked to prepare for the worst as originally they weren't prepared to do surgery/he wouldn't have survived getting on to bypass, let alone anything beyond that. DS smashed both surgeries and is a happy healthy 2 year old. He has a cardiac review every year and may well need surgery again in the future though we hope not!

Your DS is in the best place and they'll do all they can to help him get better. Ask all the questions you need to and if you need support, they'll be help for you too.

Thinking of you and your boy.