Much, Much Better

Arden and I went to the aquarium yesterday and having the OmniPod made the day better!  These outing have been trying in the past.  Between extended car travel and often less then healthy foods at the venues, Arden has suffered with higher then normal or safe blood glucose levels so that we could get through the day without a low blood glucose incident.  These high levels effect her mood and make her feel sluggish and sick.

Yesterday I am happy to report that no such high or low levels were experienced, I was much more relaxed and able to enjoy myself and Arden and I had a wonderful time at the aquarium, perhaps the first such time in many years... and I’m thanking the OmniPod for it.  Until a cure is found, research and technology is clearly going to be Arden’s saving grace.

**

The following are archived comments from this post. You can post new comments below.

Mark

Hey Scott,

I just wanted to drop you a quick note.  I really enjoy your and Arden’s blog.  It is nice to see things work out once in awhile.  Best of luck with the Omnipod.

Tuesday, March 10, 2009 - 11:07 AM

First problem

Not so much a problem as a mistake... I missed for the lack of a better term.  When I replaced Arden’s Pod last night I placed it too high on her abdomen.  The area I choose wasn't fatty enough so the insulin wasn’t being absorbed properly.  This led to high blood glucose readings.  After I figured out what happened and replaced the Pod with a new, properly placed one all is well again.

Lesson learned.

UPDATE: It turns out that the cannula got kinked, I called the manufacturer today to find out more about why that happened and was told that the cannula most likely hit muscle on it’s way in and bent.  Until Arden gets bigger we will have to be more vigilant about exactly where the pump is placed. 

Things are going well

So far things are going very well with Arden’s new insulin pump.  I’m still fine tuning some settings and she is still insulin resistant in the morning but mostly we are progressing nicely! 

I’m thrilled to say that Arden’s BG has been very stable overnight, which is a huge relief for us.  I’m also extremely happy to tell you that Arden has worn eight OmniPods so far which means that she has been stuck eight times these last 24 or so days instead of 168 times!  Her fingers are still getting poked as frequently as before but I may have an idea about how to stop that too - stay tuned ;)

I’m no longer afraid of milk!

We arrived home last night after Cole’s baseball practice around 9 pm.  I was answering an email when I heard Arden say the following, “Dad can I have this”.  Arden had been complaining about being thirsty before we left baseball so I expected to see a can of diet iced tea or a diet soda in her hand but when I turned around I saw what can only be described as a horror.

She was holding milk and <wait for it> strawberry syrup.  Now in the past at moments like these my heart sinks and then it ascends to my throat.  Sinks because I have to tell Arden that she can’t have a glass of milk before bed, especially not a glass of milk with a tablespoon of high fructose corn syrup mixed in it.  Then it jumps into my throat because milk raises your blood glucose fast and drastically and it hangs around in the blood for a long time - it’s not exactly the optimal night time drink for Arden.  The strawberry syrup raises Arden’s BG rapidly as well but it dissipates (with insulin) faster.  The two together would pose a proper challenge for any person managing a child’s diabetes in the middle of the day but 30 minutes before bed it’s just out of the question.  In the past I’d have said no and I would have felt horrible saying it.  But last night I decided to trust the pump...

“Trust the pump” is my mini-mantra this week.  Things have changed in regards to how insulin is measured and delivered so I have to trust the numbers that we’ve entered into the pump and the math that it’s doing based on them.  So I trusted the pump, mixed a tablespoon of pink liquid sugar into a glass of milk and gave Arden the insulin that the pump indicated was proper.  I would have never,  let me repeat never have felt comfortable giving Arden that much insulin before bed in the past and I would have stayed up all night checking and rechecking her blood glucose if I did.  My expectation would have been that I’d either have to wake her up to eat (if I gave her too much insulin) or administer more insulin and sit up all night checking her BG (if I gave her too little).  That however seems happily to be a thing of the past!

This morning when I checked Arden’s BG at 8 am she was 108!  You may have no idea why so I’ll tell you but typing that last sentence makes me so happy that I could cry.  Arden got to drink milk like a normal kid, I got to wake up this morning not exhausted like a normal person and the hours that fell in between those two seemingly innocuous events didn’t hurt my little girl’s body. There was no sugar in her blood last night hurling her towards kidney failure, heart disease, amputation, blindness or early death.  

Today because of the OmniPod milk is just milk, yesterday it may as well have been rat poison.

**

The following are archived comments from this post. You can post new comments below.

AmyK

Oh, how I can relate! My daughter's insulin start on the OmniPod was just a week ago today, and this weekend, after nine months of my waking her to eat breakfast at 6:00am, she slept until almost 9:00am...and her BG was in range!

Tuesday, October 12, 2010 - 02:07 AM

Tandy

Reading this made me tear up! My son has been pumping for over a year now and I remember the moment he got to eat without worry even more emotionally than I remember 9/11. What an amazing moment!

Friday, November 5, 2010 - 10:33 PM

Scott

Thank you both for reading and for commenting!

Monday, November 8, 2010 - 07:22 PM

No, not that basil

Day one was really like day .5 because by the time we got home from the insulin start appointment it was 4pm.  The real work began that evening when I did Arden’s first basal test.  

Basal refers to a minimal level that is necessary for health or life. As used by diabetics and health care professionals, it describes a low, continuous dosage of insulin (either as a basal rate from an insulin pump or a slow-acting insulin injection) intended to "cover" the glucose output of the liver.  This works together with a bolus of insulin, which is a dosage of insulin intended to "cover" a meal or to make a large glucose level correction.

When we were injecting insulin Arden would get a dose of a slow acting insulin called Levemer.  It was a time release medication that acted as her basal insulin.  It was decent but sometimes unpredictable, would last an indeterminate length of time and caused a lot of lows.  So I’m glad it’s gone from our lives.  In it’s place Arden’s fast acting insulin (Novolog) is now automatically administered by the pump in tiny increments every hour.  To fine tune those increments I had to test her BG every two hours all night long that first night.  When Friday morning came I was a bit tired but I had a lot of good data that helped us make adjustments to Arden’s basal rates.  

Now truth be told, the rest of that first day I was a bit of a wreck.  Not so much because of the pump but because it felt like I was starting over - which I was.  I had Arden’s routine down to my own little science and it worked most days very well.  Now I’m counting every carbohydrate that she eats and trusting this little piece of plastic to do what I have been doing for the last two and a half years.  Most of the day I felt exactly the way I did in the hospital when Arden was diagnosed - heart in my throat and looking for a window to leap from.  By the time Kelly got home from work I was fried, unsure of myself and emotional to say the least.  

Arden’s BG had been high all day. I realized around 1 pm that her basal rate needed to be increased during the day to a higher dose.  I called Kelly at work to run my theory by her. I wanted to run my thoughts past Kelly first to make sure I didn’t sound like a moron when I called CHOP and so I could get my crying done with Kelly so the poor nurse wouldn’t have to suffer through my weepiness.  In the end I think I was right, I called Cathy at CHOP made the changes - so far I seem to have made the right choice.

On day two (today) I focused on Arden’s insulin to carb ratio (IC).  That number represents how much insulin it takes to combat a certain number of carbs.  We initially had it set to 1 unit per 50g... I moved it this morning to 1 unit per 45g.  Again, so far so good with that change.

Right now it’s just before midnight and Arden’s BG was 208 about 45 minutes ago.  I gave her .2 units with the hopes of getting her into her range (100-150) for overnight.  If the new overnight basal rate we programed is correct, she should wake up in the morning still in that range - which would be nothing short of magical for us.  I’m less stressed today then I was yesterday but still no where near comfortable.  I’m anticipating that by this time next week I’ll have most of the kinks ironed out and I can go back to my baseline, which is being frightened all the time that Arden has type I (but at a much lower intensity level).