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Re: [IP] Just a few thoughts (very long)

Hi Fran,

Just wanted to confirm that a lot of your feelings are similar to what I felt 
4+ years ago when Zachary was 7 and I first saw the pump.  I felt that he had 
enough to deal with without having a pump attached to him etc..  We were at 
Diabetes Research Institute's What's Up Doc day and anyone interested in the 
pump could go and hear more about it.  I immediately told my husband that 
wasn't for Zachary and passed that lecture completely.  Then I went to a 
local support group and found out that one of the other mothers there had 
just put her 7 year old on the pump and he was doing very well.  Most of the 
parents of the kids at that support group already had their children on the 
pump but they were older.  I got the sense that they no longer understood the 
problems faced by the few of us raising kids on inection therapy.  I 
researched the pump, read Pumping Insulin, attended pump support group 
meetings that were mostly comprised of adults.  When Idiscovered the 
possiblity of making my son's life so much more normal on the pump, I finally 
accepted our endo's initial offer (from 6 months prior) to put him on one .  
It took me 6 months from when she offered us the pump until I was comfortable 
to move forward.  Transition is hard.

Days before Zachary was to start pump therapy, I mistakenly started thinking, 
gee his bgs are smoothing out, and had moments of questioning my scheduled 
start date for him.  But then I snapped back into reality and thought long 
and hard about how we had to follow the clock every minute of the day, carry 
half a grocery bag full of food wherever we went, waking him up to have a 
shot early in the morning every day - feed the long acting insulin all day 
and night, unpredictable highs and lows, overtreating the lows resulting in 
highs.....looking back injection therapy was a nightmare compared to pump 
therapy.  The pump is not a panacea and it's still diabetes.  Reality with 
the pump is there are still highs and lows.  The pump is a little machine 
that works most of the time, but there are malfunctions and frustrations 
involved.  With careful monitoring, and troubleshooting, you learn quickly 
how to manage these too. 

Fran, in all honesty, I feel Zachary is less encumbered by diabetes with the 
pump than he was on injection therapy.  His life is infinitely more carefree. 
 Now he carries a few lifesavers with him when he goes out.  I send him off 
for the new school year not even caring what time lunch is - we just adjust 
the bolus ratio if it's earlier or later than last year.  Minor adjustments 
make him feel so good and bring his bgs closer to target. He has more energy 
and enthusiasm than he ever had on injections.  I praise him constantly for 
all the blood glucose testing he does on a daily basis.   He's only recently 
inserted his own infusion sets and he feels very good about it. He's nearly 
12 now and there hasn't been a single day he ever wanted to back to injection 
therapy.  When he goes swimming or takes karate or plays basketball, he 
disconnects from the pump.  It's not attached to  him during hard physical 

My husband felt that we were forcing Zachary into something that he was too 
young to deal with - the pump.  I think it was my husband's own apprehensions 
about what lies ahead, the unknown.  It was like learning diabetes all over 
again and in many ways it stirred up those old feelings too.  

BTW, one time when we were changing the site while Zachary was in the 
hospital (our endo starts kids on insulin in the pump in hospital), Zachary 
had a huge tantrum and refused to allow his father to put the infusion set 
in.  Back then the nurses were watching, surrounding my husband and son.  Z 
used Emla under tegaderm, then that had to be removed,  - I think it hurt 
when he removed the tegaderm.  Then he had to wash that off, clean it with 
hibiclens and his skin was burning.  He flat out refused the insertion of the 
then BENT NEEDLE WITH WINGS.  One nurse left in  a huff saying "this kid is 
not ready for the pump".  The Disetronic rep was at the hospital at the time 
and he concurred.  It was time for dinner so I calmly told Zachary we'd give 
him his shot of fast acting insulin, he could eat dinner and then we'd talk 
about the insertion later.  After a couple of hours of cuddling and talking , 
I mentioned that the next time we went to the grocery store he could get a 
candy bar while standing in line, something we had NEVER done (he was 
diagnosed at 15 months old and we had very anal retentive endos and 
dieticians previously).  He knew that the pump would free him from his 
previous rigid lifestyle. His eyes lit up.  I put the EMLA on, someone 
suggested we just wash it off with plain soap and water, and we did the 

 My husband asked the endo when she came later that evening what she thought 
- were we pushing him too fast?  Our delightful endo (Renee refers to  her as 
Dr. WOW - Walks on Water ) said "what do you think?"  She's ever empowering.  
I knew we had to go on with it.  I knew this was just a small hurdle to get 
to the goal of a more normal existence with diabetes.

Fran, your feelings are so justified and honest and true.  There was not one 
word that was irrational in your post.  It was  heartwrenching. ((HUGS))  
Mothering a child with diabetes is beyond difficult on a daily basis.  I'll 
fight until my last breath to see diabetes cured because even though we are 
managing my son's diabetes  much better on the pump, it's still ravaging his 
body.  I'm more of an activist about seeing diabetes cured, now than before.  
I hope that every person with diabetes or with a family member with diabetes 
will also become an ardent advocate for a cure .  There's no room for 
complacency with this indsidious destructive disease.

Ellen H. Ullman
Mom, Advocate for children with diabetes and their parents, Friend, 
Webmaster...<A HREF="http://members.aol.com/CamelsRFun/index.html"> 
http://members.aol.com/CamelsRFun/index.html </A> aka KidsRPumping.
 <A HREF="http://www.insidetheweb.com/mbs.cgi/mb760046">Message Board Cure 
Type 1 Diabetes</A> 
 SUPPORT FUNDING A CURE FOR DIABETES.  <A HREF="http://www.drinet.org"> 

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