Monday, 16 November 2009

I am not a nurse

Nor am I a technician.

And yet, I have the pleasure of looking after all this
without the luxury of an instruction manual.

The feed pumps have them, the Nippy itself has a huge one, the nebuliser, suction pump, powered wheelchair and beds all came with them. I still use my manual to set the delay function on my cooker. And yet this beastie (it's a humidifier) comes with just one photocopied A5 sheet telling me how to clean the electric probes (don't throw them away, don't boil them, don't immerse them in water, just wipe them and not with alcohol).

It's "intelligent"; it doesn't just alarm, it flashes a light telling you which bit of it has the problem. Of course that's not much help if you don't know what kind of problem each bit might have. An online search found me a service tech's manual, but I'm pretty certain I don't need to know where to clamp the wires to ground it for it's annual electrical safety inspection.

The manual did eventually give up the information that the other night's problem was to do with the water supply; hanging the water bag rather than leaving it on the side resolved that one nicely. Today I had the pleasure of changing the hosing on it; a weekly task and this the first week.

Step by step, remove probes from old tubing and replace immediately in new. Clip tubing, unclip tubing, wrestle to unclip probe which appears to be welded to the tubing, refasten in new tubing. Repeat until it at least looks similar to before.

Hang new water bag. Why, incidentally, is the water labelled "Non-pyrogenic"? Surely this isn't something we need to be told?

Hook whole thing up to the Nippy and then to Little Fish. Say goodnight, turn out the light, sit down. Bip bop boop peep peep, bip bop boop pip pip. Leap up, with Little Fish sobbing, and hit the silence alarm button. A new light flashing - says there is a problem with the lungs. This is intriguing; I didn't know I'd got a probe inside LF. I assume this symbolises something else, and head back to Google for the answer.

Probe issues. I push the probes more firmly into their holes, and retire again. Five minutes later, Bip bop boop peep peep, bip bop boop pip pip, and more screeches for Little Fish. I tighten up the next probe along and hope for the best. Five minutes later...

At this point I sit and retrace the entire thing, and find a third probe which for some reason is still plugged into the old circuit. Extract it, plug it into the new, and watch the temperature rise nicely. Little Fish sighs, eyes closing, and gives herself over to the comfort of something else breathing for her.

Is it worth it? Alarms, ridiculous amounts of plastics, the need now to cart litres of non-pyrogenic sterile water with us in addition to all our other supplies, a new alarm and a whole lot of fiddling, and a shorter hose so less mobility for Little Fish when she's in bed. Oh, and no battery back up so not usable in power cuts or on the move. All pretty powerful reasons to give up on it. Add in the expense - not borne by us, but someone's still paying fairly heftily both for the machine itself and the supplies (hmmm and I suppose we are paying slightly, if only for the additional electricity used). Oh, and the condensation and general rainfall now present in Little Fish's bedroom.

But, seven nights with is, and seven nights with no nosebleeds. Eyes clear and bright in the morning not bloodshot and crusty. And she seems to be sleeping slightly less but waking up more cheerful and less croaky. The jury's out.



Doorless said...

Don't you just love new stuff! Alicia 's Cpap had a built in humidifier. Very simple to use.
Hope they can come up with something better for you. Yes and the electric bills keep going up with each bit of equipment!

Tina said...

all sounds very complicated...the oxygen humidifyer is a platic pot with a long and a short tube oxgen in on long tube out to child from short tube, simple!

hope it does the trick for LF though.

MOM2_4 said...

Sorry you are needing to figure out new equiptment without a manual. I'm not sure I be able to do it, with or without a manual - looks way complicated. Good luck!!

mq, cb said...

Do you mind if I ask why LF needs ventilation whilst she sleeps when she clearly doesn't need any when she is awake? Is it because she is prone? I hope you don't mind me asking and I will quite understand if you prefer not to answer such a personal question.

Tia said...

I don't mind explaining at all. Little Fish has Arnold Chiari Malformation, which in layman's terms means that a part of her brain stem is squashed down into her spinal column. Because there's less space there than in her skull, it's squashed. This puts pressure on th brain stem - which controls a number of vital functions. In Little Fish's case, at the moment, that means that the bit of her brain stem which triggers breathing malfunctions. So when she falls asleep, her body forgets to breathe. She also forgets to breathe when she's concentrating hard on something, which is why she needs close supervision at school.

That's also the reason why she has difficulties with swallowing, and part of the reason for her speech delays.


swift said...

I think I may have queued behind you today...very impressed by LF's manouevring/multitasking skills :) [together with a momentary wish I could do it half as well ;) ]

mq, cb said...

Thank you for the explanation. That's terrifying; I can see now why back-ups are such an issue. I also now appreciate why you like the regular sound of the Nippy's operation working so much. A beautiful thing, indeed.

I may have to resurrect the idea of the LF fan club though. What a trooper! Just imagining how she has to consciously think her way through the need to breathe, and the need to swallow is mind-boggling. No wonder she has such strength of character.

You said that the AC Malformation causes these difficulties "at the moment". Does this mean that there is a possibility that as LF grows, the pressure on her brain stem may ease? Or is that too difficult for the doctors to predict?

Tia said...

Swift - was that you in the canteen, or were you one of the many in X-ray? Apologies if you were in x-ray with us!

mq, cb - The Arnold Chiari may ease as she gets bigger, but it may also get worse. There is surgery which can be done to relieve it, but this would be very likely to cause her problems with her arms. Since LF's arms are effectively her arms and legs at the moment, we're reluctant to do that except as a very last resort.

Swift said...

Tia: I was in the canteen queue (very pleasant change to get just a few glances from someone LF's age before return to normal business, rather than being scared/worried :) ).

I started a phD there recently, but hadn't quite realised that the rehab side was based there too...luckily they're being nice and squeezing* me into clinics early in the day (I haven't found a reliable accessible to me taxi yet, so rely on buses).

I hope you're all recovering/recovered from such a long day...doesn't sound great.

*Judging by seating discussions, this may be literal ;)


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