To me, William seems to be doing well and getting better from his line infections. However, his platelets dropped over the weekend and his liver function tests are poor for him. All in all, his blood tests suggest he has been a bit more 'septic' i.e. the infection had more hold on him than we thought as he fights and copes so well and looks well for the numbers showing in his blood. He has to remain in isolation for the time being so we get our own cubicle but there is no school or playroom. The good news is that it could well be the sepsis that is causing him to need more fluid as it has an impact on his kidneys. The bad news is that we look set to loose his line. We are going to try these line locks, an antibiotic, antifungal and antiviral agent that will be locked in his line when he is not on TPN to kill anything that wants to set up residence there. The team think it would be better to do start fresh with a new line. So, we will soon be doing the usual, almost monthly these days, routine of the line coming out and a femural line in his groin put in for a few days before a new one is put in. This time, the team want him to go to Birmingham for his new line as there are experts there in getting lines in children like William with limited central line access. Our team also want to update the transplant team as they are not happy with the way things have been and want advice on managing William in the medium term and hope his transplant will not be too far away. I must stress as the girls read this that Wills is OK but that he is on the maximum of everything and there it not much we can do when he is unwell. His bugs are getting resistant to the antibiotics and his liver is struggling with the constant infections with numbers creaping up suggesting his liver will eventually start to fail if these infections were to continue for a lot longer. This is a key reason why we were referred for transplant and it was very much the right thing to do to choose this option. He needs his call as soon as possible. It still upsets me to think like this because of what I am wishing for someone else but he does need it. I almost play games with myself. For example, a wonderful Mum on the ward who lives nearby saw me handwashing our clothes (the washing machine here is broken) and offered before insisting she takes it home with her to wash. She took some today, including my favourite jeans. Now I am wondering if I we will get called, leaving it behind. Does being somehow not ready make it more likely to happen? It would be a very small price to pay.
I am off for my journalism course tomorrow. The writing is keeping me sane at the moment. We had a task to write a column this week. I would love a column in a family or health mag or newspaper page. I have a book on parenting a chronically sick child called 'Extreme Parenting'. This is what I would call my column and it would combine our story with our experiences of 'extreme parenting' such as giving up a good job with a big wage and living on a low income (topical at the present time), entertaining a small child on a drip 20 hours a day, coping with separation from Hope and Ellie, enjoying days out with a buggy or electric wheelchair and no car.... It would be humourous, as we have to find the funny side and would cliff hanger ending each week - will we, won't we get the call and then how is he doing each week. It would also raise awareness of transplants and organ donation. We are supposed to be having a session on how to get a column tomorrow so I hope I can work out some ideas on how to pitch it afterwards. I would read it! Here is the sample of how it could look that I am going to take in tomorrow (I bought a printer to use in hospital today. I just can't get on with the amount of time we spend here without one!). If anyone has any mag or paper that springs to mind where it would fit the style then please do let me know.
‘Extreme Parenting’ (series title)
Am I living in a box?
This week has been another week spent in our ‘Chelsea Pad’, the affectionate term we have adopted for Chelsea and Westminster Hospital. We have been coming in and out of here for three years now, unfortunately, of late, more in than out. We are usually on the same ward every time, almost always in one of two beds. It doesn’t take more than a couple of days to feel stuck in the rut that you had managed to escape from for a couple of weeks. There is a daily script that everyone sticks to, often quite literally. Wonderful people whose sole aim is to help will come in at exactly the same time every morning and utter the exact same words, every single day. Over the years this has gradually become more and more dispiriting. On Wednesday I woke up and prayed to be set free from the ‘Groundhog Day’ loop. What do they say about think hard about what you wish for? A few hours later my prayers were answered. William has a particularly nasty and potentially infectious little bug and we were swiftly trundled onto the ward next door and into a cubicle. The loop was broken but with it came a price. I am now in a box, with no outside windows, with a lively but poorly and fractious four year old tied by his drip to a pole twenty four hours a day.
I have had to draw all my resources to keep William entertained without resorting to spending copious amounts of money in the nearby Chelsea shops. One good thing our confinement is that I am unable to escape with him to the Kings Road where I would be forced by very strong persuasion and guilt to buy him a daily supply of Thomas the Tank Engine books and new engines. There is a newsagent adjacent to the hospital and I have succumbed to a few magazines in my moments of creative weakness. In my defence, these have been milked of every available second of entertainment. Once the stories have been read, colouring and activities done the pictures are cut into jigsaw puzzles, sorting games, memory games and for sticking collages. I have to keep up my own work whilst in hospital as we may not have a home to return to, especially in the current climate of mortgage defaults and house repossessions. I have my laptop and mobile internet which doubles up in the day time as a DVD player and an endless supply of children’s TV tie in websites. I realised today that I really can’t manage another week without a printer so purchased the cheapest and smallest I could find within a thirty minute return trip while William was having a school lesson in his cubicle. We can now print the activities and templates from the websites and already have a plea in the parent’s room for discarded boxes and juice bottles so we can make a ‘Mr Maker pasta robot’. As I was setting up the printer, William investigated the box it came in and ended up climbing in. A whole hour passed while we decorated it before William sat in it his new ‘house’ to watch another DVD. Making a house is one of his ways of expressing his very strong desire to go home from hospital. Meanwhile, he is taking this ‘living in a box’ to a new extreme.