Saturday, January 24, 2009

The end of today and the beginning of tomorrow

I didn't get that restorative sleep last night so I am blogging early before curling up with a book and trying again tonight. William woke a couple of times in the night, sore after his endoscopy. We both got to sleep again but were woken at five as his feeding tube had come unattached and several hours of feed, together with the contents of his stomach were in puddles all over and under the bed. Wills is now in a deep and calm sleep so I am hoping for a better night tonight.

I am still very relieved that Wills hasn't any rejection but today has not been a good day for him. He has been struggling with thick, slimy saliva in his mouth all day and just won't swallow it. Needless to say, he has been very quiet! He has been out of sorts too. Not surprising really, as his blood sugars have been in the 20s at times, I would feel pretty lousy if mine were so high. An explanation for this hike came with today's tac (tacrilimus, an anti rejection drug) levels. William's are high enough to be toxic and, as this this drug is the likely culprit for the increase in his blood sugar levels, this could explain a lot about how he has been feeling and behaving today. I googled (naughty girl!) tacrilimus and blood sugars and have found that one study showed that 20% of kidney transplant patients needed insulin due to 'tacrilimus induced diabetes' and that the mean onset for this was 68 days post transplant. William's transplant was just over 2 months ago so I think there is a strong chance this is what he has, especially as me being type 1 diabetic puts him even more at risk. The team here are still watching and waiting and hoping I guess that it has been due to him being unwell and now the high tac levels but the pattern has been consistent with sugar levels steadily increasing (apart from today's jump) for the last two weeks, despite his recovery from the pneumonia and a week of tac levels that were too low to be of any clinical use. I just want to get things sorted so he can be made to feel better and we can all go home. The good news is that William's stoma outut appears to be settling a bit (although he does tend to pour a bit overnight at the moment so I hope I haven't spoken too soon).

I managed to escape for half an hour today to get Wills a Thomas DVD that I couldn't actually find - bring back Woolies - they were lined up in there!! I did buy a few bits and bobs to keep him occupied. Magic paper, crayons and paint are a real favourite at the moment. If you have children then I strongly recommend them. The paint and pens only work on the 'magic paper'. William was given a magic painting set just before Christmas and it is one thing he will pick up however he is feeling so I bought in reinforcements. I also bought in reinforcements for me in the shape of two more Jodie Picoult books (the author of 'My Sister's Keeper, something I gloriously managed not to mention yesterday). Her new book 'A Change of Heart' was half price and is about organ donation and transplant so that will be interesting. I also picked up Cecelia Ahern's 'Thanks for the Memories' as this is about received memories following a blood transfusion. The idea of taking on some aspect of a donor's memory is interesting. William has a total obsession for strawberry flavoured food, something he never displayed before his transplant. We thought it would be biscuits that he wanted as these were his obsession for 'smelling' but, no, strawberry yogurt is the real thing and the only thing he has dared to put in his mouth and actually swallow so far. I will be interested to see how this is treated in the book as it is something I would like to explore in a piece of fiction at some time.

Talking of my writing. This blog has been too busy since we came home for those two short days to have given me the space to celebrate my personal bit of news. Among the post that welcomed me home were two cheques for accepted short pieces and fillers I had submitted and a complimentary magazine containing a feature I sent in 'unsolicited' some months ago. The article is in this months 'Woman Alive', a Christian magazine that can be found in Christian bookshops and online. I am now well and truely a paid up, professional, published writer. Now I need to keep up the momentum, along side that I am slowly managing to regain in my main job. One of the key things that struck home in 'My Sisters Keeper' is the way the mother had totally lost all touch of what and who she was before she became Mum to a sick child. I will come back to this in a later blog but it has given me a wake up call to re-form and strengthen links with the woman I used to be and, where this is no longer possible, look for new avenues to be she that I want to be, she who exists outside the constraints I have found myself in. Of course, there are many other messages in the book about the impact on siblings and relationships etc and I will come back to that. I can't do much about those until we all get home but finding 'me' again has been a recurrent theme in this blog of late and something I can begin to work on right here and right now!


Molly said...

I hope you have a better nights sleep tonight Sarah. I know from experience that everything is easier to cope with if you're not tired.

I'm sorry to hear about Wills' trouble with his blood sugar. It's something I've never experienced though, so I can't be of any help there. But the team at Birmingham are great, and I'm sure they'll soon sort out a plan for Wills. I hope Wills stoma output continues to settle (fingers crossed).

You'll have to let me know which other Jodi Picoult books you read and what you think of them, because although I loved 'My Sister's Keeper', I've read a couple of her other books, but didn't like them. I saw 'A Change of Heart' in the bookshop the other day, and wasn't sure about it from the blurb. It looked to me like it'd be very negative about organ donation, but please let me know what you think when you've read it.

Congratulations with your writing :D I'm very impressed that you're managing to write at the moment with everything else that's going on.

Moll x x

Becky said...

I hope you have a good night's sleep: you deserve it. Just a quick comment, as I'm off to get some sleep myself - just wanted to say I've read thanks for the memories, and whilst it's partly a love story, the whole premis is taking on the memories of the person who donated blood - something I found extremely interesting! I wanted to send a card to Wills - should I send it to the hospital, or to the PO Box Post Pals address? Congrats on the writing!!

Hoping he's feeling better soon,
Becky xxxx

Hoppers said...

Thomas mini yoghurts are only available in strawberry. Prosaic, but just a thought...!

Emmie said...

Sarah I am SO relieved to hear that Wills isn't showing signs of rejection, though I'm sad things are still so tough for you all. I'm hoping things will improve really soon when his bowel and him learn to get to know each other better. Oh and CONGRATULATIONS on your writing successes. When is the novel coming out hehe?! Hugs xxxx

Sarah Milne said...

Ah yes my dear but he asked for strawberry yogurt before he knew of Thomas ones and then asked for strawberry jelly, custard, lollipops...none of which come in Thomas varieties.... AND he doesn't want to try Thomas chocolates just yet!!!

Richard Weir said...

Such good news that Wills' bowel isn't rejecting! Shame about the blood sugar, this must be a concern and disappointment to you. At least you are au fait with diabetes - but poor wee William must find the finger-pricking a trial.

I hope you got some sleep and that you get another good night tonight. Take care, and hang in there!