|This was Sasha last night, needing oxygen wafted from a mask|
I've been putting off writing this update because a) the doctors didn't get back to us until 6pm today anyway and b) it wasn't with the news I wanted to hear. Sigh.
So, to cut a long story short... No actually scrap that, there's no easy way to cut this short. I need to do a quick recap. We came to the Royal Brompton on Thursday because Watford hospital had discovered 4 leaky valves in Sasha's heart. After thorough scans here, 3 were found to be minor and one moderate. Heart function otherwise seemed OK though so doctors fairly quickly deduced the general problem, causing the leaky valve, was elsewhere in the body.
Pneumonia had originally been thought to be the cause of the effusion (excess fluid in space around the lungs - hark at me, medical terms expert now 😉) in Sasha's chest. However they subsequently ruled that out, but were quite baffled by the way Sasha was presenting - no real fevers or general illness (other than the vomit on the first day, Saturday, when I took her to out of hours doc then got sent on to A&E). The puffiness under her eyes was the biggest indicator that something was up.
Via a few other suggestions, including Nephrotic Syndrome, and after many tests and scans, they have narrowed it down to the kidneys, and some sort of vicious Strep virus was mentioned. As they are heart and lung specialists here, they had to get in touch with the GOSH renal team, who helpfully didn't answer their phone all day. Finally they did, and the solution for now is to transfer us back to Watford tomorrow for 'a few days' (=they've not decided how long yet) while she takes some kidney medicine so they can monitor her and test her bloods daily over there. They also need to check her blood pressure which had been creeping up, and her oxygen levels which were too low last night.
So we're still not heading home, oh joy. Haven't broached this with Sasha yet; she seemed to accept we would be spending another night here. I suspect if she wakes up feeling better tomorrow then she'll be fairly distraught at another trip in ambulance which is not back home 😣
On the silver lining side, they have said no more IV antibiotics (though I don't trust doctors not to change their minds, it's happened before...) and I have now managed to get our gorgeous, challenging little daughter, who wouldn't take any medicine at all, to swallow both liquid and tablet medicines over the last week. Just got to hope she realises the importance of continuing that once we get home... I mean, I don't want to be threatening hospital again 😏