Saturday 29th August 2009. Still in Calgary.

Ok. Here's the next bit of news. I went in to the hospital just before 5 this morning (bit of a scary walk - albeit a short one, but it was v. dark and no one was about. Perfect scene for a spine chiller....) and seeing my poor little boy was a shock to me. I have been by his side since Monday when all this started and then coming away for a few hours sleep and then going in to see him fresh again was a bit of a shock (I know that sounds silly, I did know what to expect, but it still made me gulp). He and Richard had a fairly good sleep though as Harry was administered codine for the first time , which really helped him with the joint pain.

He was so very stiff that his position hadn't changed from when I left him late last night and his joints had swollen even more. He still can't open his eyes though I'm pretty sure he acn see us through his lashes.

Fairly early on in the morning, two specialists in Tropical and infectious diseases came to see me. One was heavily pregnant and in teetering in high heels and the chap, the more senior of the two was hearing a Hawaian shirt and cowboy boots. I couldn't help a little mental guffaw as they walked in! Good job everyone is on a high state of alert and wearing gowns, masks, gloves and the works or I wouldn't have been able to concentrate on what he was saying!

Now, to what he was saying. It was an enormous relief to hear him say that he can narrow down what Harry has to two things. No one up to this point has been too sure and therefore have been unable to treat him accordinly. The two options are Kawasaki Disease and Stephen Johnson's Syndrome. The former is the more likely of the two, but one of the main symptoms is that the child has to have an extremely high fever for at least 5 days so they had to leave Harry burning up in order to see. Well, he's exceeded the five days now so they are please (so to speak) with that. Harry had more bloods and various horrid swabs taken today so that he can do further testing adn at the moment he is going to treat him for the Kawasaki. This consists of a massively high dose of asprin and then a continuous flow, for 12 hours of white blood cells - that is if his body doeesn't reject and show an allergic reaction to them (possible because the cells are from multiple donors).

So, the treatment began this evening, the asprin was successfully administered so they started on the intravenous immunoglobulin. Sadly, and most frustratingly, he has had a reaction to this and his blood pressure (which was high) has dropped quickly and far too much, so the treatment has had to be stopped. The docs are working right now to get his blood pressure back up again and I have left the hospital (I SO didn't want to, but the girls were beyond tired - and now they are having to wait while I write this) with the medical team working on how to administer the much needed white platelets without Harry's blood pressure dropping. RIchard is there now waiting to see what they decide.

So that's all the news today chaps. He did say a few words today, the first being "play the drums like Jon and Benj" (you know who you are, you two - oh such heros!). Generally though, he just lies there stiff , swollen and unable to be touched. How I would love to give him a cuddle. It hurts him even to hold his hand. Singing to him though seems to be soothing (though I think the ward are now a little sick with "Doe a Deer, a female Deer" - in two or three part harmony, which ever you prefer, with Lizzie and Lexi! Bit of in house entertainment!).

So, off I shall go and catch some ZZZs now. These girls need it too. They are being so good, but are so bored. There's a great deal of tv watching, junk food eating and staying up late going on - they've never had it so good!

Thank you everyone for your messages. It really is so lovely to hear from you. We feel very far away from home at the moment, so coming away from the hospital and then sitting down to write this, only to find lots of messages from friends is really really lovely. Thank you.

Love from Noo.xxx

P.S. SOrry for any spelling errors and typos. I'm typing as fast as I can without checking so you just have to fill in the gaps and use your imagination, I'm afraid! x