Read the CCPD posts in order, so they make more sense :)
CCPD, at last!
CCPD Part II - Training
Setting up the CCPD machine at home took longer than I expected it to - after all, it was just a matter of plugging in the machine, right? Yeah, right!
I started moving the boxes I'd left on the stairs up to my bedroom - it was past midnight at this point, so I had to do everything without creating too much noise. And realized that the top solution bag would have to be heated, so first thing I did was sweep the top of the nightstand clear of all the clutter, put the machine on there and plugged it in. Set the bag on top and let the machine warm it up (it would take at least a half hour to fully warm up the solution to a comfortable temperature).
Then I still had to clear out the drawers of the nightstand, so I could use the top one for the 2nd 6-liter bag and put some tubing supplies in the bottom drawer (while still having to have space for the flashlight, lightstick, antacid, and other stuff that usually littered the top of the nightstand). I took all the stuff out of the drawers and moved them to the bottom drawer of the other nightstand, and put some more supplies into the top drawer there.
I moved the nightstand closer to the bed, so I would have room to stack boxes between it and the wall. Took the box of red-cap dextrose solution (2 bags remaining), added the remaining 2 green-cap solution bags, and used that as the base to hold the box of pink-cap Icodextrin solution bags. My plan was to put the Ico bag on top of its box - but the level was too low, it had to be more or less at the level of the top of the nightstand. So I took one of the many empty boxes, turned it upside down and stacked that on top of the pink-cap box. So far so good.
The big 6 liter bag fit comfortably inside the top drawer, but now I had no room for my little tray of end-caps and hand-sanitizer. There was just enough room on the nightstand for the machine and my alarm clock. If I set the tray up there, I would just knock it over in my sleep when the alarm went off the next morning. I brought one of my handy little stools and set it by the bed. Now I couldn't open the nightstand - but that wasn't as big an issue because I could simply move the light-weight stool when I needed to open the drawers.
By this time it was past 1am and I was still trying to do everything ultra-quietly. But the outer bags of the solution bags are SO VERY NOISY! I opened all three bags and got out the instruction sheet (3 pages!). Then I had to figure out which was the drain line extension, of all the bags that I'd brought back with me. Once I got the drain line, I set it up to drain into the toilet and brought the other end into the room. It was a 12-foot extension, which gave me PLENTY of slack in the line. Next I opened up the cassette & tubing bag, opened the front of the cycler and inserted the cassette. Figuring out the spaghetti of tubing was another matter, although there was also a "tubing organizer inclulded with the cassette package. Going from right to left, the 6 tubes are:
Drain tube
Top (first) bag - red clamp tube
2nd and 3rd bags - white clamp tubes
Final bag - blue clamp tube
Patient line - the one that eventually attaches to my catheter
The nurse had explained that I should go methodically from right to left while connecting the tubing, so I wouldn't make mistakes. So I started with the drain line, attached it to the extension and made sure that the drain clamp and extension clamp were open. Yes, open. Next, I had to use the thingamajig (the CXD device) to punch the red-clamp line through to the solution bag on top of the machine, that was by now a warm-and-toasty body temperature. The next line went to the bag in the top drawer, ignore the line after that, use the blue clamp line to the final solution bag (the pink-cap Icodextrin solution). Then it was time to hit GO and sit back while the cycler primed the tubing with fluid, to remove all air bubbles in the tubing.
Priming... said the machine. And kept saying it for a good 15 minutes. Then I heard a sputtering sound from the bathroom, strode in and almost had my feet slide right out from under me. I'd forgotten to take off the plug at the end of the drain extension tubing that went into the toilet. And apparently, the machine was pushing hard enough to spray fluid all around the toilet. The door was wet almost half way up. I pulled out the plug at the end of the tube, and the machine happily finished priming. Meanwhile, I was looking for some way to secure the drain tubing to the floor and door jamb, so I wouldn't trip on it if I needed to get up in the dark. And then the solution came to me - I would tape it down, securely. After all, I had lots of tape to play with :)
And after that, all I had to do was connect myself, so I did, and gratefully fell into bed. It was 3am. Only to have the machine beep a warning "Patient line blocked," about 30 minutes in. Argh! I had accidentally kinked my catheter, and blocked the flow. Unkinked it, and made sure it wouldn't kink again even when I turned around in my sleep. And went back to blissful sleep :)
Do you KNOW just how absolutely blissful it is not to have to interrupt my sleep to do an exchange? Absolutely, utterly blissful. That's how blissful. You notice I said "blissful?"
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8 comments:
Phew, glad it's working out, and that somehow or the other you can sing again. The lack of news was worrying!
Yes, I too was waiting about the cycler and how things are. Great to hear that your sleep can be fairly restful and that you can sing again:) Consider this comment a hug, please.
Shyam: Sorry to worry anyone - I was writing this marathon post from Friday through Sunday! Just seemed like it would never actually end :P
And Tees, thanks for the hug. Here's one right back at you :D
Shyam: It WOULD help if you called the right number - leaving messages on the other one does no good because it is usually turned off. I just happened to turn it on yesterday because my phone's battery was down and it was charging, and that's when I saw your messages.
well, what IS the right number???Email it to me!
Am glad you have started on the cycler; AND that you can sing now.
not that it is particularly relevant to this post, but when i heard this news, i thought it was absolutely amazing
http://ukpress.google.com/article/ALeqM5hX6F5cdjuFPR__ExPUWh-yDbYAvg
your blog came to mind, so i thought i would share it with you. btw, i came here through shyam's blog and wanted to repeat what a lot of other people have said about your fortitude and patience. good luck and i hope this new device makes your life a lot simpler.
meera
been ages since i came this way -- and lovely to see that blissful-making things have been happening! hope the uninterrupted sleep hasn't made you forget to eat, though...
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