T+48: Back in Hospital

Well, I suppose it had to happen at least once, but it seems likely that Kay has got an infection. Apart from the now usual seemingly-medicine-related evening sickness, she was suddenly and without warning sick around 3am. (Whoopee, another broken night to add to our growing collection). This morning at breakfast Marion measured her temperature as 38.3C. Since I was due to take Kay to Nijmegen for a routine check anyway, we weren't too concerned.

At Nijmegen, the routine check confirmed the raised temperature, but the oncologist (a doctor who I've never seen before) had no worries. The routine blood test showed that Kay's white cell count had again risen to 2.5 and - excellent news - her platelet count now seems to be maintaining itself. It was 25 on Monday and 25 again today, meaning that her bone marrow is now starting to produce platelets. Unsurprisingly Kay's red cell count had dropped to 4.6, thus time for a transfusion. We were given the option of having it today or waiting unil Monday. Since I had time today, I elected for the former option.

Kay was written up for two units of blood which meant essentially that we could expect to be in the Day Care unit until the evening. Thus we were moved into a day care room and after an hour or so the standard checks were repeated. Kay's temperature had increased to 38.9C and her Oxygen saturation was hovering around 90%, which is too low. These symptoms typically indicate an infection, but could also possibly be caused by a low red cell count. But with no other symptoms and no other way to determine the root cause the duty doctor decided to play safe. So a load more blood was taken from Kay for cross matching and for cultures to test for a range of possible infections. She was then started on two broad spectrum antibiotics as a precautionary measure since we were told it will take until tomorrow before the results of the cultures come in. In other words, we could expect to be admitted. 

Time passes slowly under these circumstances and, after what felt like a long wait, the first blood arrived. Shortly after we were transferred to the oncology ward, so we're now back in a different room than before but still with the lovely view of the woods. Next checks showed a slight drop in temperature, which was good news. In the late afternoon the second unit of blood was hung up and, as I write this, is still running in. The most recent check showed that Kay's temperature is now down to 37C and the nurse has also been able to reduce the flow of oxygen to a minimal level. So at the moment I'm left wondering whether it's a bacterial infection or just the effects of a low red cell count in a child who is completely exhausted and who has no reserves of any kind. I guess that we'll find out tomorrow.

For now, I'm staying with Kay in the hospital. Fortunately, these days I always carry around spare socks & underwear for just such an occasion. But I'm going to have to beg a toothbrush or intravenus anti-halitosis drugs if I'm supposed to interact with any living being with a sense of smell tomorrow.

The duty oncologist has just dropped in, this time one well known to us and with whom I have good contact. She tells me that they suspect, but only suspect, that Kay's fever could be/have been caused by the CMV virus in her blood. Also she says that they will stop the antibiotics that were started earlier because, in terms of white cell count (one's natural bacterial defence), Kay's blood is in pretty good shape and they don't want to distort this by unnecessarily pumping her full of ABs. So they now plan to watch and wait for the results of the various cultures tomorrow.

I spend a lot of time on this blog talking about Kay's medical condition. I think that you should have got the idea by now that medically Kay is doing very well. But my biggest worry right now is that Kay-the-patient is not doing very well. In fact, as I have been explaining today to anyone who will listen, Kay-the-patient is doing pretty badly. One week after her BMT she was making dance videos. Three weeks after she started with the nausea that she's been struggling with ever since. But four weeks after, when we went home, she was still able to run around the garden for 10 minutes playing hockey or football. Last weekend she could barely hit a hockey ball. Yesterday I had to carry her up the stairs and from her bedroom to the bathroom. Seen like this, it's clear that her general condition continues to deteriorate.

Equally, her mental state reflects this deterioration. She's gone from being cheerful and reasonably happy to being miserable, depressed and, today, scared. She's tired and fed up of being sick all the time, of feeling weak, of needing to sleep all the time and of not being able to do anything. She's said to us literally, "Kay is handicapped" - in the third person. I arranged today for her to talk to the excellent child psychologist that looks after the children here. Hopefully she will be able to strengthen Kay's mental state and resolve.

So, I'm not at all upset that we need to spend a night or two in the hospital. As I explained to the oncologist, I/we need at least some reassurance that this is a "normal" situation at this stage in Kay's recovery and that things will get better.

I'm now beginning her evening medication protocol. It will be interesting to see whether the same events repeat themselves this evening and what the doctors make of the situation.

More tomorrow.