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lizziecHad a lovely surprise the other night (Thursday) - foo and rah brought Ben up to me, which was amazing. They also brought benji to see me and we all ended up going for dinner after visiting hours, which helped recharge my spoons a little. Ben's heading back to Canterbury, and work today, but it's been amazing to have him around in the meantime. I don't know how I'll ever thank everyone for how amazing they're being.
Mum's still hanging on, but definitely getting a little bit worse every day. The doctors have put a nasogastric tube in to feed mum that way as she can't swallow any more. Any food she tries to eat gets spat back out again, and liquids just dribble out when she next opens her mouth. It's pretty grim to be honest. The downside to the feeding tube is that mum's finding it difficult to breathe with it in. The tumour is blocking off her left nostril, so she can't breathe through it and she can't have the tube up there, so they had to put it up her right nostril, which blocks that off as far as breathing goes. She's now breathing through her mouth only, which is somewhat complicated by the fact that she's now not producing enough saliva making her mouth incredibly dry. She's been prescribed some artifical saliva which has solved the problem somewhat, but it's another indicator of how much worse she's getting.
On the upside, she's off the insulin sliding scale now, and back on metformin, though a liquid version that's put in via her NG tube as she can't swallow. She's still on an IV for fluids though, due to the fact any drink she has comes straight out.
What's most distressing is how confused she was last night. I was hoping it was just because she'd been pulled around a lot yesterday - the NG tube going in, down to XRay to check it was sited correctly, (incidentally, I went there with her and was allowed to stay while they did the XRay and, despite everything, it was pretty cool), back to her room and then getting shuffled around in bed, having the feed connecting and having some trouble breathing, or at least thinking she did.
According to the nurse though, mum was confused again this morning. Last night she kept trying to get up to go to the toilet for a wee even though we kept reassuring her that she had a catheter in. She also kept tugging on the ng tube and towards the end was getting even more confused. She was worrying about the electricity board (why?), saying "he has two assistants" (no idea who has two assistants), and telling me how scared she was.
Being me, and incredibly pessimistic I was expecting the call last night because of that and slept pretty badly.
Mum is still here though, but according to the nurse still trying to get out of bed to go to the toilet. I'm hoping today's visit isn't like yesterdays because I'm not sure I could stand it. It was really really bad. I could handle her dying far better if it didn't feel like she was losing her marbles too. And I don't think it's just the drugs (the nurses pretty much said that if it was the drugs the confusion would have come up before, as she's been on the same combo of drugs for over a week now). Honestly I don't think she's got much longer. I may be being really pessimistic. I'm sure I am. But things just feel really bleak right now.
ETA: 12/07/11 No longer filtered
Mum's still hanging on, but definitely getting a little bit worse every day. The doctors have put a nasogastric tube in to feed mum that way as she can't swallow any more. Any food she tries to eat gets spat back out again, and liquids just dribble out when she next opens her mouth. It's pretty grim to be honest. The downside to the feeding tube is that mum's finding it difficult to breathe with it in. The tumour is blocking off her left nostril, so she can't breathe through it and she can't have the tube up there, so they had to put it up her right nostril, which blocks that off as far as breathing goes. She's now breathing through her mouth only, which is somewhat complicated by the fact that she's now not producing enough saliva making her mouth incredibly dry. She's been prescribed some artifical saliva which has solved the problem somewhat, but it's another indicator of how much worse she's getting.
On the upside, she's off the insulin sliding scale now, and back on metformin, though a liquid version that's put in via her NG tube as she can't swallow. She's still on an IV for fluids though, due to the fact any drink she has comes straight out.
What's most distressing is how confused she was last night. I was hoping it was just because she'd been pulled around a lot yesterday - the NG tube going in, down to XRay to check it was sited correctly, (incidentally, I went there with her and was allowed to stay while they did the XRay and, despite everything, it was pretty cool), back to her room and then getting shuffled around in bed, having the feed connecting and having some trouble breathing, or at least thinking she did.
According to the nurse though, mum was confused again this morning. Last night she kept trying to get up to go to the toilet for a wee even though we kept reassuring her that she had a catheter in. She also kept tugging on the ng tube and towards the end was getting even more confused. She was worrying about the electricity board (why?), saying "he has two assistants" (no idea who has two assistants), and telling me how scared she was.
Being me, and incredibly pessimistic I was expecting the call last night because of that and slept pretty badly.
Mum is still here though, but according to the nurse still trying to get out of bed to go to the toilet. I'm hoping today's visit isn't like yesterdays because I'm not sure I could stand it. It was really really bad. I could handle her dying far better if it didn't feel like she was losing her marbles too. And I don't think it's just the drugs (the nurses pretty much said that if it was the drugs the confusion would have come up before, as she's been on the same combo of drugs for over a week now). Honestly I don't think she's got much longer. I may be being really pessimistic. I'm sure I am. But things just feel really bleak right now.
ETA: 12/07/11 No longer filtered
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Date: Sun, May. 9th, 2010 01:10 pm (UTC)no subject
Date: Sun, May. 9th, 2010 03:00 pm (UTC)You are both in my prayers.
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Date: Sun, May. 9th, 2010 06:50 pm (UTC)no subject
Date: Sun, May. 9th, 2010 07:10 pm (UTC)no subject
Date: Sun, May. 9th, 2010 07:45 pm (UTC)