Day +272

Hi to all the faithful...
Well things got worse but are better now. Thank you for all your calls, emails and posts. Jesse is in the Alex (Brighton), the swanky new childrens' hospital. It is Very Swanky but you still cant get anything to eat after 7pm except crisps, chocolate and cuppa soup. Of course that's the least of Jess's worries as he isn't eating anything or having a milk feed or even drinking, BUT he is much happier as the TPN and drip means he doesn't feel too hungry at all. He gets bored but we have computer, books, DVDs, games and of course jigsaws (he's almost finished a 1000 piece one already)!

It got worse because the night I wrote the last blog Bernie decided it would be a good time to get really bad croup! So Derek and I were up all night and poor Bernie had a horrible time barking like a dog and gasping for air. We were wrecked in the morning and then terrified because I read on NHS direct about how croup is a virus sometimes caused by para influenza (which could be deadly for Jesse) and that the second night is worse than the first. So I rushed him in to see the GP, who advised us to give him a large dose of steroids to reduce the inflammation in the airways and keep going with the inhaler (Bernie has asthmatic tendencies so it makes it worse for him) and then rushed back to get Jesse into hospital. We hung around all day and in the end came home for a couple of hours as they couldn't organize the TPN until after 6pm. So poor Jesse had to another day of not eating, he really was struggling, especially when they told they didn't want him to drink either! Anyway, he made it and when the TPN went up the difference was noticeable. Since then he has been fine.

Bernie was better the next night too and seemed much improved in the morning so I sent him to nursery. But I felt terrible when I picked him up, he looked really pale and couldn't stop coughing. He cried for over 2 hours last night and finally went to sleep when I took him on a sleep drive. We have kept him off school today. Derek isn't taking on any jobs at the moment and luckily we have Hayley who can stay with Jesse in the day. I managed to work all day yesterday and am at home now sorting out papers to send to my book keeper (I hate VAT). Bernie is still coughing constantly, so we are taking him to the GP again this afternoon in case he needs nebulizing, at least he is happier than yesterday.

We still don't know how long they want Jesse in for, it may be 3-4 weeks. We are planning to concentrate the TPN so that he can be hooked up for less hours (at the moment it is 24 hours, in a couple of days he goes down to 22, then 19, then 14 and we hope soon it will only be 12 hours a day. It is possible we can do the TPN at home but I think it will need funding sorting out and we'll need intensive training so we have to weigh up whether it is worth doing or whether we should just be happy to have him in hospital overnight every day. We are doing alternate nights now, and it's working quite well but it will get exhausting...I'm not sure yet what to do, but I'll keep you posted...anyway must go as I've masses to do. Keep in touch,
loads of love
c
x
love to you all