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[IP] discouraged pre-pumper........
I am REALLY starting to lose my nerve here. I am beginning to be freaked
out thinking about this all-the-time-needle deal. I know so many of you
do this for your kids, and none of you sound particularly sadistic.
LOL But I am starting to feel awfully squimish.
All this week, following the wonderful(not medical) advice from you
guys, I have COMPLETELY changed Paddy's regimen. His old clinic to heck
in a handbasket, I am following what every book, person, and ounce of
common sense has told me from the beginning(dx's April 1998), and his
control is HUGELY improved. He has only had about 10% highs after over
a year of CONSTANT, 100% 4 and 500's! Not a ketone in sight! After
about ten months of mod-large EVERY morning!!!
But I am paying the price for this tight control. Where I used to be up
helping him "garf"(his word for throwing up), changing sheets, and
giving midnight, 2am, 3am etc baths, at least I knew if I was exhausted
and slept through the alarm to test him, he was just gonna be high as
usual. Now I am scared he'll go too low, and that is WAAAAAAY
scarier! I have smoothed out his bed levels and the last two days he
has been much less prone to nightime lows. He has decreased his eating
needs, his insulin needs, and his poor behaviour. Even seems to be
sensitive to a "normal" high again--had a fitful night with a 250!
That was, even just last week, a LOW number for him!!!!!!!!
I know I am rambling, but I have the worst case of anxiety.
--potential infections, pain for him at infusion sites, multiple changes
needed to get a good infusion site, tape allergies, a day like Pixie
--I may never get any sleep with the pump, with MDI I may never sleep
again, so the difference is....????
--HE may never sleep again with a needle in his BODY(I am getting queasy
--no one in my family will ever learn it well enough and I will never
have a nights rest to myself again....divorced here from an abusive
spouse who has liberal visitation(grrrrr), my folks live across
sidewalk, but they are already frustrated and AGAINST the pump!!
(wonderful people though!)
I know I sound REALLY self-absorbed here, but the truth of the matter
is, I homeschool, and am the sole custodial parent. I carry all the
responsibility for my sweet 6 yr old. I am tired, I am scared, I am on
a real rollercoaster of emotions here, and I am faced with a deadline
for making a decision.
Because this doc's clinic is closed to new patients and he is only doing
us a HUGE favor seeing us for this time, IF and only if he is impressed
with us will he stuff us into his clinic. Otherwise I am "screwed" and
have to go face the old stupid clinic with closed-minded docs and
ill-educated nurses again. REALLY no other choices here for ped
endo's. All that, and I'd have to try to explain to old doc(the
original "God Complex" guy) how I thought I was so special to NOT put
him on the glucophage as Rx'd, to NOT follow his insulin RX and to not
follow his dietician's plan--THAT sounds like a hoot. I have complete
certainty that he would not care, even seeing the improved numbers. Or
he would "claim " that victory for his own, and be the same weenie as
always. I NEED my son to be well. We have wasted too much time already.
I am exhausted, and I am not sure I can keep up this pace AND fight with
bad sites and changing it 2-3 times to get it right, and bubbles, and
infections, and ........and everthing I have read and heard about.
Our appt for eval for pump has been moved up to Mar 7. That gives me
just about 2 weeks to get my thoughts in order.
Does anyone have any experience with this? I still have yet to see a
pump or infusion kit for real. I have seen the advertisment videos for
the disetronic, I am reading my "Pumping Insulin" book, I am reading
every letter that comes through here(not digest version!)
And I am getting REALLY COLD FEET!
Exhausted, Scared Momma of 6 yr old Paddy
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