3 weeks ago yesterday, we were admitted to hospital. Sometimes it feels that we are no further along. Yesterday was one of those days. Grim.
Madam had a high fever continuously and medication had little effect. The rash covered her whole body in huge scarlet patches.
We had a scan that showed fluid is present in all her joints, which, like her face, have swollen dramatically. They took some fluid from her knee (without any anaesthetic...) and it has gone to join her other fluids on the shelf in the lab, next to her gallons of blood, for more tests.
The latest theory is that the rash and swellings are not, as initially thought, a reaction to the antibiotics - which have been changed again - and this 'thing', whatever it is, is no longer behaving like an invasive biological infection, so they are now investigating rheumatic and autoimmune diseases.
She had her eyes checked. Apparently the blood vessels at the back of the eyeball can hold clues - but it was all clear and her vision has so far not been affected.
A doctor - of the very junior variety - was called in the middle of the night as there was some concern about her oxygen saturation. By the time he arrived her stats had improved, but he decided that blood tests needed to be done immediately. I'm afraid I told him, gently but firmly, that he was mistaken. Blood tests did not need to be done immediately. It could wait until morning. We had had enough of needles for one day.
And then she slept and slept.
It is now 6.30pm on Friday and since midnight last night we have had... wait for it... NO FEVER!! In fact, we have had an all-round much jollier day.
The urgent blood tests that apparently needed doing in the middle of the night did not materialise today, indeed the cardiac team and the IDU agreed that the junior night doctor may have been a little... rash. Talking of which, ours is starting to recede and the teams have decided to have a period of no intervention while test results filter back. They have replaced the massive doses of Ibuprofen with massive doses of Aspirin. Oh, and we had x-rays this afternoon on knees and hips to see if there has been any bone damage.
At least there is one thing on which everyone is agreed - we are not infectious, so we have been allowed out of our room! We even managed to potter down the corridor to the playroom with The Husband when he visited. The new antibiotic tastes hideous so we have eaten a lot of chocolate today and we have watched Peppa Pig on DVD several times (so far an improvement on Mr T, but I might not be saying that by the end of the weekend).
In the sandwich shop this morning, I asked a man if he was at the end of the queue.
""You go first," he said. "I don't mind."
I thanked him.
"That's OK," he said. And then, "We only came in last night and today everything has changed."
His little girl had been suffering from headaches for two weeks before she was rushed to A& E. They found she has an inoperable brain tumour.
"How am I going to tell my other children?" he said.
Puts the bad days into perspective, doesn't it?