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Re: [IP] Re: Trying hook up again
Sounds like your in for the same ride that I had. Greg was the first pump
to be started here. I have to say overall that it was a horrific experience
(start up I mean). Go in armed to the teeth, and don't count on your so
called "medical professionals" to know how it works. I haven't shared this
story yet but perhaps its time.
Greg and I went into the Hospital October 7th for start up. About a week
prior to this I started calling our Dr's nurse to see if they wanted Greg's
sugars to help them figure out a basal profile for startup. Their response
was everything is fine, we're all ready for you, dont worry. The only thing
they requested was a menu plan so that the hospital could have the proper
meals for him. Before going in I received a call from the Head Nurse
telling me that they were not going to be treating Greg any differently that
any other diabetic. Shocked, I asked her to explain this. Her answer was
that they knew nothing about the pump and they would simply be monitoring
him, but the treatment would be no different than any other diabetic child
in their care. I said fine, that's all I need. She then went on to explain
that they were providing me with training. I took a deep breath and calmly
reminded her that it was my dollars that was paying for the trainer to come
to Charlottetown and the only reason we were starting up here was to provide
them with the opportunity to gain some knowledge about one of their patients
and his treatment. She backed down slightly at that point. Disetronic
providing training to us, the doctors, the nurses, the Diabetes Education
Centre and even our school's principal.
When we got to the hospital, our rep from Disetronic came in and we hooked
Greg up to his pump, no basal running yet, just to provide his bolouses
until the Dr came in to set his basals. Dr. finally arrived around 4:00 and
used some totally off the wall method of calculating a night time basal.
She wanted to set his initial basal at 1.6. Both Pattie (my rep) and myself
looked at her in horror. Finally she asked what we suggested. I explained
the method for calculating basals, and according to my calculations it
should be 1.0 (this was leaning on the heavy side as if you calculated
according to his age and weight it would have been .6). Finally she said we
would split the difference and she set it at 1.4.
At 3:00 a.m. Greg's level was 2.1 (that's 37.8 for the Americans). The
nurses all looked at my and said what do we do? I reprogrammed his basals
and cut him down to 1.2. (as an FYI his night time basal is now .6) They
argued with me that I had no right to change the Dr's orders, and I looked
them square in the eye and said "as his Mother I have every right to do
this, and unless your ready to sit beside this child with a glucogon kit, I
suggest you get out of my way". They did. Afterwards I went out with my
"Pumping Insulin" book and asked them if they wanted to have a look at it.
They took it gratefully and I sat with them for about an hour explaining how
basals were set and tested.
The next day when Greg and I came home, our Dr. gave us no instructions
whatsoever, told us we were doing fine, that I had a good handle on what was
necessary and sent us on our merry way. We never even went back to see her
for a checkup for three months.
To say things have been smooth, would be an absolute lie. We are still
trying to get Greg's sugars under control. So much so that two weeks ago I
threw everything out the window and started from scratch. Set a flat basal
rate of .6 and we've been testing every two hours, trying to finally get
everything where it should be. Slowly but surely they are getting better
and we are going back to the IWK (the children's hospital in Halifax) on
I'm not trying to scare you Lori, just letting you know that you have to be
armed with knowledge and be prepared to stand up and say that's wrong.
Our Dr. is finally starting to take a bit of interest now. Our last
appointment I indicated to her that if she wasn't prepared to learn about
the pump perhaps we should look for another doctor. This shocked her and
she admitted that she had full confidence in my ability to handle this and
didn't think that I needed any help. Of course we need help and I think
she's finally beginning to realize it.
Even after all this rant though, I have to say that we are happier with the
pump. Greg loves it and insists that he would go back on injections. If we
ever get these pesky basal rates set right we'll be sailing.
Wendy (Greg 13, dx'd Dec 98, p Oct. 99)
WORK like you don't need the money...
LOVE like you've never been hurt...
DANCE like nobody's watching...
LIVE like there is no tomorrow!
----- Original Message -----
From: "Lori Kissick" <email @ redacted>
Sent: February 12, 2000 1:15 AM
Subject: [IP] Re: Trying hook up again
> Hi all again.Yes we are still waiting to get hooked up to the pump. My son
> is to be admitted to the hospital on Feb.14 to get this done. We left our
> spare pump at the hospital so the doctor and CDE could play with it as
> said they wanted to do so they would be ready on the 14th because when we
> went on the Feb.2 they said they were not ready.I called the CDE today to
> see how they made out with the pump and to no surprize they have not even
> looked at it. Well they had better not tell me on the 14th that they are
> ready.I know they are scared as my son is the first to go on a pump where
> live but then I think they should have been doing some reading or
> something.I guess that is why they said I had to stay in the hospital with
> him as they know I am ready for this. So please wish us luck that we come
> home next week with the pump on.
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