Day 5 did not start on a good note. When The Husband's alarm clock went off this morning, through my addled sleep I thought it was the emergency phone ringing from the unit to summon us to her bedside. Then, the only good coffee place was closed, because apparently in the real world it is a bank holiday, and obviously nobody drinks coffee on a bank holiday. So I began on the back foot.
It turned out that she had had a very settled night. Her heart rate had dropped and was steady. The ultrasound showed the fluid on her heart may have decreased somewhat, enough to decide that she would not need a heart drain today. Some of the effusion has entered her heart but at the moment it doesn't seem to be affecting cardiac function. We were warned that if it worsens she will be transferred to Southampton for an operation to scoop it all out (I think that's the correct medical terminology), but they think that is an unlikely scenario. They will continue to monitor it every morning. So she is no longer nil by mouth. Hamburgers all round. The lung drain has worked splendidly, the bucket by her bed is filling up nicely and her breathing is easier.
We are still no closer to getting to the root of all this and it is still too early to tell if the antibiotics are working. We were warned that her treatment is going to take weeks but the Cardio Consultant says we are shuffling slowly in the right direction.
The Husband has had to go back to our other life and I miss his lame jokes. (Actually, that's not strictly true...) She continued to sleep through much of the day, occasionally waking to say "Daddy gone", until - get this - we were moved back to the children's ward! (Insert loud whooping sounds here.)
However, oddly, I have found this the most difficult day so far. As soon as anyone approaches her bed she disintegrates. She has been so incredibly brave, but today, everything was just too much. Even listening to her chest or taking her temperature has had her distraught. She is, justifiably in my opinion, terrified of what they will do to her next. Because of all the machines she is wired up to and her drips and the drain, I am not allowed to pick her up and have her on my knee. She has found that very hard. So I have taken to climbing into the cot with her for a cuddle, bugger the rules.
Arriving back on the children's ward was great - lovely to be greeted so warmly by the nursing staff. Then to discover that she had been put in a busy, noisy room shared with three other children - her bed next to the children's play area with assorted parents sleeping on camp beds on the floor... I'm afraid I had a wobble. I pointed out that my daughter had been in Intensive Care just 24 hours previously, that we are going to be in hospital for at least another few weeks and that it was, well really rather rubbish. I am ashamed to say I had a bit of a weep. Marvellously, a little room was found. So now we have relative peace and quiet again. Madam had warm milk and ate six little squares of bread and apricot jam and we watched Iggle Piggle on the overhead TV and she smiled.
Was I unreasonable? Maybe. But hey, she smiled. I have found it very hard to keep positive today, despite all the significant battles she is winning. That little smile helped a lot.
On a jollier note, I have been trying out every external door I come across to find the best place to have a sneaky cigarette. There are piles of fag butts everywhere where people have been before me, but my favourite so far - and I'm not making this up - is under the big red notice that says NO SMOKING HERE, next to the sign pointing to the Coroner's Office.
It is your messages that are keeping us going and The Husband specifically asked me to mention what an enormous boost it gives us. Thank you all so much. Let's hope tomorrow brings whooping.