[tri-med] Re: What do you do - feeding pump broke at night!

----- Original Message ----- 
From: "Irene Smith"
> Last night, after just putting Caroline to bed, her feeding pump broke.  I
> had just gotten a new pump since our old pump was due for a calibration. 
> We
> were so furious and unsure of what to do.

Here in Aus we have a different situation because we either borrow or buy 
all of our own gear - no insurance and precious few supply companies for the 
general consumer.

I have found that the fastest way to get a broken piece of equipment fixed 
or a replacement borrowed is simply head down to the hospital and tell them 
that its an emergency and you need to borrow theirs - its amazing how they 
always manage to find one to loan you, even though they couldnt possibly 
spare a loan a half hour earlier :-)

The hospital is our back up in a blackout - we use a vent so we have no 
option (I have no generator and cant afford to buy one thats powerful enough 
to run the monitor, pump, suction and vent) The same with broken equipment 
or if I run out of something that I cant do without.

That said I have run a slow drip overnight, actually I do it frequently 
these days as Alex doesnt need the pump and did it often when we first got 
the tube because I couldnt afford a pump. It does require checking 
constantly because the plastic expands and contracts with overnight temps 
and because you are using the wheel to control flow (the wheel stretches the 
tubing).

As William said its 20 drops to the ml so thats how you set the rate. Only 
fill the bag up with enough milk for 2 hours (or whatever the maximum volume 
is that they tolerate in a bolus). If you have a partner then alternate 
shifts to top up the bag 15 minutes before its scheduled to run out (if no 
partner you get to get up every 2 hours :-)).

The 2 hours is our safety valve - that way you dont over feed - and believe 
me underfeeding is preferable to dumping an entire night into a child too 
fast.

It does take practice but it does work. As for a gravity feed I guess I am 
confused because to me a gravity set seems to be totally different to what 
everyone else is describing. What was given to me as a gravity set (and I 
still have a couple I think) were rather large hard plastic bottles with a 
weird connection of tubes. It sort of worked like a syphon, in that you 
created the flow by drawing some fluid uphill to then be gravity fed 
downhill. The different width tubings and height of the cannister determined 
the flow rate. I found it way too complicated and cumbersome. I have now 
mastered the art of slow drip feedings in preference. In fact I havent used 
the pump for about 4 years now and slow drip anything that Alex requires 
overnight. Its usually not a lot or often - just when he is unconscious for 
more than 12 hours and needs to be kept hydrated but cant tolerate boluses 
because his body has shut down.

I have written about this before but I have found Sherwood (who make the 
kangaroo pump) to be superb for customer service in the US. If you were 
really desperate I would call them and I am sure that they would find a rep 
with a spare demonstartion pump. After a whirlwind three weeks in the US I 
finally made it to LA and was getting ready to pack when I discovered that 
my kangaroo pump, which I had brought all the way from the Australia, 
wouldn't run on battery for the flight home. (we use 240 V AC and while the 
pump would run with a US adaptor for 110 DC it wasn't charging the battery 
and I didnt realise till I ran through the check getting ready for the trip 
home) No way was the airline going to allow me to run both the pump and vent 
from the power supply in the plane.

Time differences between St Louis and LA mean that I was ringing Sherwood 
after hours and the cleaner answered!!! Tears, desperation and a frantic 
mother must have been relayed loud and clear because he went searching for 
someone in the office for me. He found some poor guy working overtime and 
after much discussion he told me that somehow he would get me a pump, with a 
fully charged battery to the airport before take off. He had all of 5 
hours!!

But he did it. I arrived at the airport (at 11pm) and there was some poor 
sales rep who had been rousted to locate a demonstration pump that had a 
charged battery to loan me. No deposit, no surety, no names were even 
exchanged. All Sherwood would say was to return it to their Sydney office 
sometime after we got home and get them to return it to St Louis.

Of course I made the whole situation a thousand times worse AFTER that. In 
my despair and franticness I had packed ALL the pump bags in my luggage 
which was safely stowed UNDER the plane. Here is Karen holding up a whole 
plane of people bound for Australia at LAX while they locate her bag and 
bring it on board just so she can get a lousy kangaroo pump bag out of it. 
Can you say RED face?? I dont even want to think about what I did to the all 
the planes after us...........

United were wonderful about it though - even despite me stupidity they 
spoilt us rotten the entire way home (they couldnt bump us up to first class 
because the power supply had been brought to a specific seat). So instead I 
had the hostess bringing me bottles of champagne, overnight kits etc etc. 
the entire way home. Instead of 2 seats they gave us 4 etc.

So hats off to Sherwood and United Airlines - and to US folk - I think they 
are wonderful..........

The supreme happiness of life is the conviction that we are loved.
-- Victor Hugo

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (10 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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