T+75: Looking Up

A lot of detailed stuff has happened the last days but the most important thing is that Kay's white cell count picked up slightly today, from 0.3 on Monday to 0.5 today. The doctors are now of the opinion that Kay is out of the danger zone, though we still have a long way to go. However worry #1 for us has become Kay's weight and physical state. Her minimum weight was previously set at 28.5kg. She has been in a long slow decline and yesterday her weight reached the all time low of 27.1kg. She has had to have mineral suppliments because we're not able to get enough liquid feed into her during a day without causing sickness. She's extremely tired and weak, probably because her body is slow consuming itself in order to keep going.

We feel that is problem is not "owned" by anyone. The doctors seem mostly concerned with Kay's medical state, the dietican merely says that Kay needs 1600 calories per day and doesn't offer any ideas on how that should be achieved. The nursing staff are struggling with the problem us much as we are, but there's more of them so the problem is dispersed amongst them. So I have concluded that Marion & I have to get organized on the subject and try to find ways to pump 1.6 litres of feed into Kay per day.

The problem is that Kay doesn't seem to be able to take a flow rate of more than 60ml per hour, meaning that the feed would have to run 24 hours per day. But it's clear that if we do this then Kay becomes very sick, seemingly because of a build up of feed in her stomach. Though again, we're not completely sure that this is the reason, but we have noticed that if Kay isn't given any feed then she doesn't feel sick. All very approximate, but what we need to do is try to be systematic about testing the various ideas we have on the subject. My view is that we should try "sprints", ie put the feed on (say) 80ml / hr for 3-4 hours, then pause for an hour or so and repeat, etc. So, we're going to try out flavours around this theme in the next days.

Marion was told today that the staff feel that Kay will really not start to improve greatly while she's in hospital. She is certainly in a poor mental state, but I think that that is at least partially a dietary issue. However, the staff are working on devising a way for her to continue her treatment at home. This will be a welcome move, subject in my opinion to us seeing an sustained increase in Kay's weight. The last time that we were sent home while Kay was losing weight, the problem continued at home and we were even less able to deal with it.

The child psychologist had a long chat with Kay today about how she feels about her circumstances. The result of this was that Kay & the psychologist had a talked with Mama & Daddy. Basically Kay is fed up with us being pushy about her doing things and has asked us to let up. Further Kay feels isolated from the ouside world and is afraid of losing her friends because of her long confinement. She has asked for our help in "bringing the outside world into her room". So we will try to organize visits from her friends and fidn ways to keep her in contact with people outside her room. We feel that we have in fact been trying to do these very things, but it seems that we have been going about it in the wrong way. Both Marion & I were rather frustrated to hear this since we feel that we've not been pushing but merely offering alternatives to Kay lying in bed all day. But yeh, we have to hear what we're being told.

Later the psychologist said to me that Kay is suffering from an "anti-attitude" and this is a perfect description of the problems that we have been facing with her recently. For example, she saw me eating yogurt with fruit yesterday and, without me saying a word, she said that she would love some too. So I spoke to the nurse and in the end arranged for Kay to get just yogurt (her choice). But when it turned up she tasted two spoonfuls and then said that it was the wrong yogurt, it was too thick. So I said that I'd ask Mama to buy some thin yogurt. Kay said she's like that, so I sms'd Marion. She asked what flavour yogurt. Then Kay said that she didn't want yogurt, she wanted Optimel, etc, etc. So it doesn't matter what you try to do for her, it's always going to be wrong. This has always been a characteristic of Kay when she's "in a mood", but she's permanently in a mood these days. If there are two alternatives, then better offer then one that you don't want her to choose first. But right now any alternative is the wrong one.

Needless to say we find this very frustrating. As parents we feel the base need to ensure that our child is getting enough food inside her. This makes us vunerable to the latter kind of manipulation - we're so desperate to improve this eating problem that we'll jump through hoops-on-fire to get whatever Kay wants, and still it's never going to be the right thing. So my conclusion is that in order to be able to lay off on the calorie subject with Kay we need to get control of the liquid feed situation.

This tangled web of problems - weight loss, withdrawn listless child, sickness, liquid feed rates, parental pressure, frustration, Kay's feeling of loss and isolation, etc - is actually very difficult to see through. Everything is so interdependent. Where does the solution lie? Part of the problem is that my head is still so full of fug and tiredness that I can't see how to go about resolving the various issues. I've been doing a lot of suduko puzzles recently and this is just like that situation in a puzzle when you know that there's a way of reasoning through the current state but that no matter how you look at it you just can't see where the breakthrough might lie. I might add that I often use these puzzles to measure my mental state. Sometime I can immediately see locked pairs, etc, etc, and sometimes I can't, usually when I'm really tired. It's an interesting metric.

Anyway, it's late now. I'm less tired than the last days but still, this is a real mental and physical marathon. I've not been cycling for weeks and as a result I've started to suffer lower back pain and stiff muscles, etc. I've started doing various exercises in the morning and evening to strengthen my tummy muscles, which is the usual cause of my back pain, but the real issue is that I have to get back on my bike and knock off the kilometers. Hopefully I'll get the chance on Saturday morning. Target = 80 - 100km. We'll see.