Sorry if part 2 seemed a bit disjointed. I was literally struggling with nodding off mid-keystroke.
Thursday had started off quite well - seemed to have some of the old bounce back, but come early afternoon, it was like a switch had been turned off.
Anyway, can't sleep right now, so making best of the awake time. Think we were up to being admitted to the ward on Tuesday.
Memory is a bit hazy, but know I had some blood tests, had a visit or two from Linda the dietitian as well a Ruth N and Kate (speech therapy). Everyone is aiming/pushing to get me swallowing ASAP, and at the very least before I go home.
Up until now, the morphine, etc has been administered via Jake, but that has all changed. Morphine is via a small infusion pump that will now go with me everywhere. Cannula for that is placed between layers of skin, so virtually no pain having it inserted. The paracetamol is administered via a cannula in my right arm -don't like this one as it hurts and they've had to move it once already. Jake is there for the overnight feeding now - something else that will kick in when I'm sent home and yet another infusion pump to be lugged around.
The morphine pump will require new syringe to be inserted into pump each day by district nurses, so that means I need to be home each day at that specific time. The feed and fortisip (feed once daily over 10 hour period, fortisip 4 times a day) are self administering and just require a script. Paracetamol also self administering and will be by script as well.
So, to go to loo now requires unplugging 2 x infusion pumps (did I forget to tell you about the saline drip they've had running continuously?), plus untangle the morphine one, and we're ready to rock. Negotiating the drip stand around the bed isn't always easy, but the anti-constipation drug they have me on doesn't like being ignored, so you learn how to do things in a hurry.
Where are we up to now? That's pretty much got used up to date re treatment protocols, but there are a few peripherals not yet touched on.
Swallowing - still a real issue, as is lack of solid food intake. Reality is knew the tube would come in to play for main meal substitutions, just didn't think it would be so soon, but these things happen. That brings us back to swallow. Tried some soft drinks over last few days, and they make it as far as an initial mouthful before I start chronic coughing. Water honestly meets same reaction most of the time, so the coughing is making throat really sore for little relief. You wouldn't believe the volume of phlegm I'm consistently coughing up.
One possibility is a barium type drinking x-ray whereby they can check for leakage. It is possible that some of the fluid is leaking past my throat and into my lungs for example. Appointment delays are up to a couple of weeks and I'd rather know what is going on before being released. Kate came back with an alternative - thickened water. Don't laugh, because this shite seems to work. While the taste isn't pleasant, I've been sipping away on this since yesterday afternoon with no coughing after effects. Have agreed to try it, but have also requested it be served cold. Come in various degrees of thick - mine is the mildly thick one.
Release Date - the moving target it seems, A couple of days now seems to encompass the whole weekend and given the raft of issues we're trying to get under control, this is still the right place to be I'm sure. Would be nice to get a couple of things ticked off, but it all seems inter-related.
OK, exhaustion kicking in again. Time for some sleep - would be nice to get more than 1 hour on the trot, but I'll take what I can get.
Sleep Well you all.
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