5 Years of Pumping!

C has had type 1 diabetes for more than 6 years now (6 years, 3 months, 17 days...to be exact). 

During the first 2 months post diagnosis, she was on a strict injection regimen with 2 kinds of insulin: regular (R) and NPH (I can't, for the life of me, remember what that stands for...).  Bleh.  It was horrible!  Does anyone still use that therapy?? 

I remember being instructed to "roll" the insulin...don't shake it!  After mixing it, for some awful reason, we had to double draw the two kinds together.  Ug.  I shudder just opening up the memories about those early diabetes days.

These two insulins peaked at certain times, long after injected.  So, eating meals at exactly the same time each day was very important.  Fortunately and unfortunately, C was just a toddler...so she was home with me most of the time.  But that about took over our days...watching the clock, hoping and praying she would eat what we had covered with insulin, hours prior.  It was grueling.  (And, yes, there were times when I'd resort to ice cream or cookies, just the get the carbs in her.)

And C was so tiny...not yet 2 years old.  We were testing her blood glucose A LOT.  I can't really even convey how difficult it was to wake up at 3 in the morning, find her at some ridiculously high number and have to draw up 1/8 of a unit of insulin through the fog in my head.  Sometimes, I would literally have to stop, shake my head, walk downstairs, get some water, walk back upstairs, look in the mirror and make certain that I was awake enough to do it.  I'd tiptoe down our creaky hallway, stick my baby with a needle, and then try to go back to sleep.

So not the life I dreamed of...

By the end of those first two months, C's doc could tell we were having an extremely difficult time with it all.  He switched her to Novolog and Lantus.  Why we were ever on the first plan, God only knows.

Novolog and Lantus...so much better (at least, for us).  Lantus was 1 injection daily and acted as her basal dosing (keeping her numbers in check, when not eating).  Novolog was injected whenever she ate, even snacks.  So, we tried as much as possible to keep it to 3 meals plus 2-3 snacks daily.  Each time she ate equaled a shot.  Gosh, thinking about it, I don't know how we got through that time!  Toddlers are like cattle...constantly grazing.

Dr K would mention insulin pumps at each visit.  I suppose my hesitation simply stemmed from yet another change.  I don't do change well.  Though the Lantus/Novolog combination wasn't easy, it certainly was easier than that first juggling act we tried.  There were more classes to take in order to learn about the pump.  The only other type 1 kid we knew didn't have a pump.  And it seemed that her endo felt she needed to be in better control in order to even think about pumping.  (I know, that sounds crazy, doesn't it?!)  And, of course I searched countless nights on the computer googling "insulin pumps for kids," and honestly, some of what I found scared me.  A technical device on my 2 year old, 24/7?  I just didn't know what to think.

Over the next several months I continued learning more about insulin pump therapy.  It finally dawned on me that what we needed, was better control of her numbers.  The long-term effects of high glucose numbers can be devastating.  And C had the added challenge of being diagnosed at such a young age, giving her more time with diabetes and, therefore, higher risk for complications. 

Well, I remember just waking up one morning and thinking, We've got to get her on a pump!  So, after nearly 14 months of MDI (multiple daily injections), we found ourselves sitting at CHLA in a pump class with our, then, 3 year old.  Another whirlwind of information.  (If there's any advice I could give in regards to starting a child on the pump, it's this:  Do not drive all the way home from a Grand Canyon trip with 3 young kids and then get up super early to drive into Los Angeles to learn all day long about putting your youngster on the pump...it will drain you!)

Anyways...we made the switch, however bumpy it may have been.  But I'm so thankful that we did.  Diabetes still stinks.  But life with a pump is a lot more forgiving.  No more drawing up syringes in public.  No more transporting insulin vials with us everywhere we go.  We can be more descrete if we want to be.  But the main thing is that we're doing the absolute best we can for C.

Yes, there is talk about artificial pancreases (pancreei?), promise of reversal in mice, and even transplants.  But until something comes along that seriously tips the scales in the right direction, I believe that C will keep on pumpin'!

First day with "Pinky" (C's 2nd pump)

Ch-ch-ch-Changes

Change. I resist it in nearly every aspect of my life, though I know it's inevitable. Perhaps the area I resist change most is diabetes.

I remember that first year and a half with MDI (multiple daily injections). It was awful. I've written about it before...about dropping out of the nursing program mainly because of...well, because of needles. But, there I was, having to inject my little two year old daughter several times a day. Sometimes deep in the night. Ironic, really.

Then came the switch to the insulin pump. I resisted it. Our endo doc encouraged us from the beginning, probably the second month on...to try it. He was a firm believer in it...that it would be easier on control and on our nerves. We did make the switch. It was hard because, though I hated the injections, I felt like I kind of had a grasp on them. The pump meant a whole new set of rules, many new do's and don't's. (And, 4 years later, I'm still learning something new almost daily!)

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So, C had her endo appointment last Tuesday. I held guarded optimism about her Alc number. I felt like I was waiting for the professor to hand me my term paper for a final grade. At the last meeting, it had dropped, if only .2. I thought certain it couldn't be higher this time. Wrong. It was right back up to 8.2. Bleh! It produced a large pit-like feeling in my stomach. So much rides on this number. I know this is a great indicator of how C's been doing the last 3 months. I so want it to get under 7.0...

The famed Tiger Elevator at Childrens Hospital.

Our doc, so sweet, said "I know you're working hard at it. Let's tweak some overnight basals and raise her dinnertime carb ratios. I think that will really help." And, then we talked about the Minimed recall. Some of those mysterious highs that just would not budge were probably due to that. Possibly. Who knows? As the D folk on Twitter say: "I blame diabetes!"

It took a few nights for the effects of the changes to appear. I don't like changing more than one setting. I guess I like the scientific method. Too much change...it's making me crazy. We've been up the last 2 nights, trying to figure this out. Things are looking good but sometimes lower than I'm comfortable with...especially at bedtime. Last night was actually full of good numbers...just not full of much sleep...for me. Around 11:30 pm, I checked C. She was only 73. But I know that she has consistently been rising over night. So, I hung tight. I laid down, staring at the clock. I did not even close my eyes...

At 12 midnight, she was 77. So, okay, I thought... she's not dropping. I set the alarm for 2:00 am. She tested at 115...yay! I went back to bed without the alarm set. At about 8:30 am, her number was 126. I couldn't have asked for better numbers, all night long! (Well, I could have asked for 100 or maybe 95 at 11:30!) Good numbers, but not much sleep. What can I say?

C is growing, changing--everyday. I know her insulin needs will change too. I need to accept these changes and not fight them so much. I know this. It makes sense. I just don't like it.