Monday, July 27, 2009

Good Numbers and Camp Fun


First, I must report that the problem with Nikki’s blood sugar was not, apparently, the pump. Rather, it was the INSULIN – we must have gotten a bad supply the last time we filled the order. The morning we were leaving for camp we had had a terrible overnight so, in a last ditch effort not to cancel camp, Bryan went and got a new refill on the insulin and PRESTO perfect numbers.

Having said that, we had made tremendous changes to her correction factor, meal bolus and target BG. Because I was not 100% sure the problem was fixed, I was hesitant to change all those numbers back to what they were – UNTIL we had 2 major crashes at camp.

Nikki is a go-getter and a very competitive little thing so she was very busy at camp. The first crash was just after she had hiked quite a way, zip-lined over two canyon areas, hiked up a hill and was on the return hike when she crashed. Thankfully, we were with a group of AMAZING leaders who had a golf cart magically appear and transport Nikki the rest of the way down the hill, to our dorm. She was up and at em’ again within 30 minutes – blobbing on the lake.

The following day we had a BAD (40) crash after a day of wall climbing and blobbing. Again, the staff at Cedarmore moved heaven and earth (almost literally) to get a golf cart to us, so I could get her back to our dorm. It was then that I felt completely justified in changing all of her ratios back to their original numbers – and we had no more crashes; AND we have had really great numbers since then. By-the-way, just like the day before Nikki was up and at em’ about 30 minutes after this crash; in a MUD PIT – Seriously.

We had a wonderful time at camp with old friends and made some new ones. One of Nikki’s best friends, Emily, gave her life to Christ during camp – something she has contemplated for 3 summers now – we are still praising the Lord for that decision.

Nikki is spending the night tonight with another of her best friends and has reported in some good numbers this evening. So things are pretty much back to normal….whatever that is. Check out some a few pictures of Nikki in action :-D.

God is Good! All the Time!

Monday, July 20, 2009

Stomach Punched

This is a hard blog to write – we went for Nikki’s diabetes check up today and it was the worst one we’ve EVER had. Her A1C’s are and have been consistently in the 7 range since the first check up after her diagnosis (they want a child of Nikki’s age to be under 8), today they were at 10. My heart stopped. We have suspected for the last few weeks that her new (relatively) pump is the root cause of so many astronomically high numbers. The diabetes team at Children’s shares my suspicions: we have made adjustments and are doing a couple other monitoring steps over the next week to confirm that. Once we are sure that the pump is the problem we will start the process of changing back to Mini Med. We are also going to file paperwork to begin her on a CGM device (continuous glucose monitoring).

What we are seeing with this Deltec pump is that it begins to deliver insulin and then just stops – no alarms, no reason; it just acts as if a bolus command was never entered. What we are afraid of now is that it sometimes says it has completed an insulin bolus delivery that it did not actually deliver – meaning she has not actually received any insulin at all. Again, this is just a suspicion at this point. Other things - a big one is puberty, she'll turn 12 in February - are most likely contributing to some of this as well.

All of this is well and good but the bottom line is that my child’s life is being compromised and that is not acceptable. I haven’t felt much like talking about it today, don’t feel a whole lot different tonight – I just can’t get my mind around that number and the feeling that I should have done something more, sooner. It does feel like I've been punched right smack in the middle of my stomach, a whole bunch of times.

Last blood sugar reading today was 103.

All for now,

Friday, July 17, 2009

Sweet Summertime


I've been sooooo neglectful of my blog for the last month or two that I hang my head in shame :-(. Things have been so busy - good busy - with vacations and family visits that I've left it unattended far longer than I wanted to. -
We had an amazing time in Disney World - but I know I've already said that 1000 times - in this instance I'm referring to Nikki's blood sugars and all things diabetes - we had not one single problem the entire 10 days!! Thank you Father God!!

The day before yesterday we were at our local theme park - Kings Island - and her blood went completely wacko for no apparent reason - and she ended up with ketones!!! UGHHHHH!! All was back to normal by the next afternoon, so I will have to add that episode to my unexplainable file.

We go Monday for her diabetes check up and I'm honestly worried about what her A1c's will be this time -

This coming Wednesday we leave for church camp for 4 days - I go as a group leader (I think that's what we're called) on that one because they aren't equipped to care for diabetes. However, in about 3 weeks she leaves again for diabetes camp and is completely stoked about that. I just wish there were more time between when she comes back from D. Camp and when school starts - there is only 2 days in between each summer.

I'm refocusing our fundraising efforts since the walk is rapidly coming upon us. We are doing pretty good so far, but would really LOVE to hit our goal of $2000 this year. If you or anyone you know is able to donate any amount (there is nothing too small) you can click the link on the upper left side of our blog and it will take you directly to our fundraising page.

I hope everyone is having a magnificent summer with awesome blood sugars!!!

Thursday, July 9, 2009

A Most Magical Trip

We got home Tuesday morning (actually the middle of the night) from an unbelievable 8 days in Disney World. I was going to post some pictures here, but since there are so many that I wanted to share – I just did a video. We are already planning our next trip to the Happiest Place on Earth, the problem now is coming to back to reality! Nikki's blood sugars held pretty well the entire time - Praise God!


video