Another nightmarish night

The MRI scan that was performed on Kay yesterday showed that she has no tumour, bleeds or blocked blood vessels in her brain. However her brain tissue has been damaged by the Methatrexate chemo. The damage should heal with time but in the meantime she has to be treated with anti-epileptic drugs. And more Methatrexate is due shortly...

Kay had not had any food for nearly 48 hours so last night we planned to put a litre of feed into her. Around 9.30 I noticed that although she said that she was watching TV, her eyes weren't pointed in the right direction. I held my hand in front of her and asked how many fingers I was holding up and she gave the right answer. So I stepped over it for the time being, after all I'm neither doctor nor nurse. But then around 10pm she started complaining about tummy pain. At the same time her O2 saturation dropped to around 80% and her eyes seemed to be fixed looking to the left. I was about to ring the bell when she started throwing up - everything that we had put in came out.

So the nurse & I started cleaning her up and I started pointing out to the nurse Kay's state. The nurse also noticed that Kay was making strange chewing movements with her mouth. Then her O2 sats dropped again to 80%. The nurse them called in the problem and the paediatrian appeared fairly rapidly. She put Kay on oxygen and concluded that she was slipping into a coma again and sure enough, Kay started to fade away. She was about (say) 30% conscious, she could respond to questions but her answers made no sense and she became slowly less responsive. She could not move her eyes to the right beyond the centre position. The doctor administered domicum (?) a drug relaxant that helps with seisures. Kay's symptoms started to slowly receed but equally she became very sleepy.

After a while - don't know how long, probably an hour or two - the effects of the drug started wear off. As Kay slowly woke up it seemed that her symptoms merely returned. When she was 'awake', ie responding to questions, her eyes were pointed left and she was still chewing. When she fell asleep the chewing stopped and she appeared more relaxed. However, through all of this she was increasingly complaining about pain/cramp in her tummy, until every now and then she was literally screaming from the pain. Also, the nurses were checking her blood pressure and pupil reaction every hour. Thus it was extremely difficult to get her to sleep and keep her there.

The doctors decided to bring forward the next dose of the anti-epileptic drug. This was administrated around 2am, I think. From that moment onwards her condition slowly improved during the rest of the night. But the tummy pain - a separate and unrelated issue - continued. I was cuddling her constantly and rubbing her tummy. She was given paracetamol, to no great effect. At some point I suggested that we use my trick to relax her and put on some music. Kay liked that idea and it worked very well. The music gave her something to focus on and relaxed her and I had an easier time getting her to sleep and keeping her there. So my thanks goes out to Nora Jones (who I saw on Jools Holland last night), Eva Cassidy, Madeline Peyroux and Katy Melua for giving Kay something of a restful second half of the night. She's lying here now listening to Coldplay. (Frank, I know that you hate Nora Jones but she does deserve some credit here...)

At around 4.30am I managed to close my eyes for the first time and during the next few hours managed to grab some sleep in bursts of about 30 mins. This morning Kay's eyes are working normally and the other symptoms have disappeared for now. But she's very disconnected with the world, which I understand is an initial effect of the anti-epilepsy drug. Also she's extremely weak, cannot sit up in bed and is feeling dizzy. Her total state is very worrying, even though the doctors tell us that she's doing well under the circumstances. But I suspect that they would always say that, wouldn't they? My thinking is that A) the MRI scan showed nothing but the Methatrexate damage and B) that if things were bad we'd be in Njimegen by now.

Today I intend to push the subject of her tummy pain harder with the Doctors. If we can get that sorted out things will become a lot easier because Kay will be able to sleep longer and more easily.

I didn't dare ring Marion during any of this - she would have been back here in a flash (she was at home last night). She really needed a night's sleep and Kay's situation was not threatening, at least on the scale on which we're now operating. I told her about it this morning and she immediately veered towards panic, justifying my decision to leave her be. At least one of us needs to have had a night's rest at any given time. And I don't think having a panic'd, sleep deprived Mama driving through the centre of Eindhoven in the early hours of Saturday morning would have been safe for anyone.

What a bloody nightmare.