T+53: Quietly Recovering?

Tuesday morning and Kay is awake and sitting up playing Plants versus Zombies on her iPod Touch. She looks a little better and is a bit more alert than the last days bit I expect that she'll fall asleep again soon. She's complaining about muscle pain which I expect is due to the fact that she's been in bed non-stop for five days. She's not had a fever for a few days now but she still needs a 1.5 litre flow of oxygen to maintain her saturation. This morning her weight was a disappointing 27.8kg, a drop of 100gms from yesterday, even though she's constantly been on a high calorie feed. Mixed signals, I suppose.

She's now trying to help herself more as well. She just decided that she wanted to have a pee sat on a toilet chair next to her bed instead of staying in bed. But it's heart breaking to see how much it costs her to do even this simple thing, she was shaking like an old infirm lady and moving just about as fast.

We have been told that she can go home when she's off the oxygen, but as to when that's likely to be I have no idea. The nurse just turned down the flow a bit to see if her saturation remains stable. We'll have to see where that takes us. But I hope that we'll be able to go home later in the week. But of course I still think that she needs to be putting on weight before we go home.

During the last days we have had a series of problems with the quality of the care tha Kay has been getting. On Saturday evening the duty nurse screwed up with Kay's meds, mixing the wrong one with milk. I only found out because after giving this meds she disappeared for so long that I decided to give the next one myself. When I looked at what remained I noticed the mistake. I called the nurse and she admitted the mistake and then gave her next med. Again she disappeared for so long that - more than 2 hours - that I gave Kay the remaining three meds. Marion has also struggled with similar problems and we have now decided to give Kay her meds ourselves - we're more reliable than the nursing staff. I guess that the problem is that Kay gets around 5-6 different things and they need to be given gradually. This takes a lot of (broken) time and I think that the system/staff here cannot cope with the level of attention required.

For those who don't read Dutch, Marion also had a run-in with the same nurse on Sunday when Kay was sick all over the bed and threw up her tube. Marion called the nurse, who determined that before she could replace the NG tube Kay would need a platelet transfusion. She hurried off to organize the transfusion, leaving Kay sitting in a pool of vomit. Marion was left to clean the bed herself and the nurse eventually returned after a long while to say that the blood ordering system was down and that it would be some hours before the transfusion would be ready. In the end the transfusion took place at 12.30am and so it was very late befor Kay got her medication. Marion was furious with the nurse and with a system that left Kay without food or medication for many hours.

We're also now running our own parallel administration of Kay's medication just to make sure that we know what she's getting and when it's given. AS I give her her meds this morning I'm filling out a form that Marion has created, detailing the sequence of meds that Kay should get. I fill in the time when I give it to her and anything else that needs noting. I think that at the moment I trust this more than the hospital's system. I have to say that Marion has been running the sae administration since Kay came home and it's great. When Kay was admited last week I just gave the doctor here a copy of Marion's list and he used it as a basis for setting up the department's administration of her meds.

Anyway, enough for now. Kay wants to play a game, so I'll do that before she falls asleep again.