T+32: An evening in the Catherina

I'm writing this entry while sat with Kay in an isolation room in the Catherina Hospital in Eindhoven. Marion took her to Nijmegen this morning for a 'routine' check, if anything about this phase of Kay's treatment can be considered to be routine. In principle everything was OK, except that Kay's blood pressure was a bit high. However the blood test results were not back before they left and a promise was made that the results would be phoned through later.

Late afternoon the call came through that her platelet count was 11, ie extremely low. Marion then made an appointment for me to take Kay to the Catherina tomorrow afternoon for a transfusion. But another call followed, the specialist saying that the combination of low platelet count and high blood pressure was too risky and that he wanted her to get a transfusion this evening. But this meant that the Catherina would have to be able to prepare the procedure and an isolation room at very short notice. So we then had to wait to see if this could be arranged. At 6:15pm we got a call to say that we were expected at the Catherina at 7pm. Great work from all involved.

And here we are. Kay has just watched an episode of House on my iPad (I've dumped all of seasons 2 & 3 from DVD onto my iPad for just such eventualities). She's now fast asleep while the transfusion runs. Hopefully we will be home within the hour. Having written that I thought that I'd better check Kay for a rash indicating an allergic reaction and, guess what, she seems to have a rash over her chest and shoulders. I just woke her a bit to check that she feels OK, which she does, but I rang for the nurse anyway. The nurse took a look and has now gone to find the doctor. Welcome to the live action medical blog...

While I'm waiting for the doctor to appear it's worth relating our (actually largely Marion's) bad evening yesterday. We had a very nice day again yesterday. I played hockey and football with the girls, Kay slept and they watched some TV. They played Monoploy, etc, etc. When it came to evening medicine time, Kay started complaining of nausea. I should mention that giving her her medication is a whole palava. She's sensitive to certain combinations of the meds and to the order that they are given. She's also fussy about the rate that they are given. Failing to meet any of her exacting standards results in nausea or worse. If one is not careful, worse can mean that she throws up all the meds and the process has to be restarted.

Marion has developed a scheme that meets Kay's requirements, but even then it doesn't guarantee a reliable result. The scheme involves giving each of the meds separately over a few hours to reduce the chance of interaction and also to prevent having to redo anything in the event that Kay is sick. (We're pretty sure that a lot of this is in Kay's head, but practically speaking it's not particularly relevant, we just have to get on with the situation as it is). The down side is that the morning and evening meds take hours to complete and occupy a lot of Marion's attention.

Anyway, yesterday evening Marion was heading for bed at 11.30pm, before which she had to give Kay her last medicine, an antibiotic. How it came about I don't know, but there was suddenly a lot of yelling and Kay was sick all over her bed, throwing out the NG tube as well. Since she's dependent on the NG tube for feeding, it was essential that it be refitted. So we had to call the district nurse out, who arrived at 12:15. By the time that Marion got to bed it was around 1am. The night was then broken up by several alarms from the feed pump. Normally I'm the first to hear and react to these alarms. But the previous night I'd not managed to fall asleep before 4am, waking again at 7am. So last night I took a sleeping tablet, nothing more than an (USA) over-the-counter thing, but I was less responsive to external stimulii. Anyway, the result is that Marion is pretty damned tired today. So as far as that goes, we're still taking it in turns which means that I'm due for a poor night again tonight. Whoopee.

Now, back to the live action. The doctor has just been in and checked Kay. It seems that the rash is confined just to her chest and that she has no other symptoms unless being in deep sleep is a symptom. Kay was completely unresponsive while we poked and prodded her looking for signs of the reaction. In the end I was a bit concerned so I (verbally) prodded her until I got a reaction and made sure that she felt OK too. In the meantime the transfusion has finished and is being flushed. Hopefully we'll be cleared to go home in the next few minutes and I'll have the pleasure of having to fully wake Kay. I'd rather pull a tiger's tail.