Yesterday I had a day to rest after going to theatre on Monday. I was a bit uncomfortable with having all the fluid on board but was ok. I had a sleep in the afternoon which helped me to feel a bit better. I have to have a gut decontamination every 2 weeks now rather than monthly because they want to try reduce the risk of infections that come from my bowel pooling fluid and then leaking around my body. The decontamination is 3 different antibiotics going ideally into my stomach but I can't so it has to go into my pej (tube that goes into my bowel). One of them is every 4 hours for 3 days, one is 3 times a day and the other is twice daily both for 5 days.
Today I'm ok but keep getting bits of pain and upset at times. My sleep isn't very good, I am restless and wake up a few times which is effecting me in the day now. Last night the sleep unit had a cancellation for the more in depth sleep study so they came and set me up for it. I had stickers all over me, a probe on my toe, another around my foot, a strap around my chest and a carbon monoxide reader attached to some nasal canulas. We don't find out the results of that test straight away, it'll be a few days. My cough is starting up again now that my antibiotics stopped on Monday. I've been re fluxing a bit past few days too but that should hopefully settle down now that I'm back on my medication. It had to be stopped for 5 days before the impedance test but because they couldn't pass the probe they've decided to put me back on the medication. This morning I had my bloods done, they needed to check my haemoglobin because its been dropping. If its dropped further today then I have to have another blood transfusion. Hopefully it won't be bad blood that makes me naughty again ;). Mummy and a few nurses said it was Phil's (one of my nurses) blood and thats why i was rebelling! I'm not allowed his blood again! Pain team have just come to review me and have increased one of my pain medications to see if it helps with the discomfort. As for everything else we've just got to wait on all the results from the tests I've had done from the past 2 days and see if anything shows.
Had my Becky yesterday, I didn't get to see her much though because she was really busy but she made sure she came to see me for 10 minutes at the end of her shift. She's off now until Tuesday so I think she's going to miss me frisking her. I've got Jo today, she's really busy too though. I've just done a bid of playing with pasta and wooden blocks with the teacher for half an hour. She gone now because I was getting tired so now I'm going to watch me too! And then maybe have a lie down with my quilt in a bit if mummy will come snuggle with me.
Busy watching me too!