Friday, August 20, 2010

Up, Down, All Around

Up, Down, All Around….


It sounds like a game my preschooler’s have been playing in the classroom, right? Nope. Those have been my emotions the past few days.

We have had some on-going training happening with Nurse L. She is totally willing to learn how is best to care for Sugar Boy. When I talk to her, she tells me, “Yep, no problem! I’ve got it!” and she has never once made me feel like I am “bothering her”. All that being said, each day when Sugar Boy comes home and I go through the logs and info downloaded out of the pump I find some small mistake. Nothing major… but still – Sugar Boy’s care needs to be precise. Even small mistakes can be HUGE if the domino affect gets triggered.

So, I call her – and we discuss – and she ends the conversation with, “Yep, no problem! I’ve got it!”

Now, don’t get me wrong – I expected there to be wrinkles that needed ironing out. And I didn’t expect the wrinkles to be ironed out on Day 1. But I have to confess that I really DID expect for most of them to be gone by day 5. So, that’s why last night (after having an already fairly emotional day for other reasons, which I will address later in this post) I was seething.

Every day Sugar Boy has a standing BG check at 2pm. This is approximately 2 hours after his lunch bolus that he got before arriving at school, and its right before a half an hour of play time, so it’s really the perfect time for his first check. At this point she is to check him, and correct or boost as necessary based on the knowledge that he is about to play. After play he goes back again for another check and then he has a snack. After snack he comes back again for a bolus based on the number of carbs he ate for his snack. Easy peasy right??

When Grandma picked the kids up from school yesterday, Linkie was reporting 261. A little high, but not alarmingly so. Here is the kicker…. When we pulled the data from the pump via CareLink, THERE WAS NO BOLUS FOR A SNACK!!! So I asked Sugar Boy what they had had for a snack that day. He answers “Pretzels”. I’m thinking…. “how can there be NO bolus for PRETZELS???” I went to the actual pump and checked the bolus history from the day – Yep NO BOLUS since lunch. This is where the seething part happened. All of the thoughts of “WHY can’s she GET THIS RIGHT???” started going through my head. I went to bed very frustrated… and literally, morning could not come fast enough so that I could call Nurse L and find out what the heck happened. Also, I might note… I was a little worried about the afternoon basal level as well… because if he ate pretzels and received no bolus for them, he should have been WAY higher than 261!

So this morning, first thing, I was on the phone to Nurse L. I asked her to give me a run-down of her log from the day before (we had not requested a daily log from her since we could get all the information we needed – indeed EVERY button push made on that pump can be downloaded via CareLink). She ran down her log with me. Boy was I in for a surprise! Her log stated that she tested his BG at 2pm and he was 263. She issued a correction via the pump and it gave him 1.7u (keep in mind we are on a u25 strength insulin, so it’s not as much as that looks like it is!). THEN at 3pm she had him back where she bolused him for 12 carbs worth of pretzels and the pump delivered 1.5u.

THE PUMP SHOWED NONE OF THIS!!!!

So, there you go – the problem (for yesterday, anyway) was NOT with Nurse L. It was with the pump.  For some reason, the pump did not record the correction or the bolus in its history. (This also explains why his BG was only at 261 an hour and a half after eating PRETZELS! Grant it – that is still higher than I would prefer, but NOT as high as it should have been if no bolus was issued.) Next step: Call Medtronic to find out why that would have happened… and what we can do to make sure it doesn’t happen again! In the meantime Nurse L and I decided that it would be prudent for her to email me her logs each day. =)

The other reason my emotions were so jumbled yesterday is I started off the day at the doctor. Now let me be clear –I AM NOT A GOOD PATIENT. I am much more comfortable with the roll of caregiver! On Wednesday I found a lump on my neck. So yesterday morning I was at the Dr, and by the afternoon I found myself at an imaging place having an ultrasound done on my neck. I am sure this is thyroid related – and I am sure it will all work out to be nothing major. But it’s just that little extra bit of added stress that I SO don’t need right now.

Oh GREAT – and just now as I am finishing up this post, Sugar Daddy just called to say that some guy BACKED INTO HIS CAR at the gas station. Front bumper and passenger side headlight is damaged.

Lovely.

Up.

Down.

ALL AROUND.

7 comments:

  1. Yikes! What a day you had!

    I hope you get everything resolved with the pump and the nurse, and things begin to run as you expect and want them to run at schoool. I can tell you from experience (this is my 4th year of taking D to school) that it might take a while to iron out the kinks. Be patient, but also as persistent and as persnickety as you need to be to keep Sugar Boy safe.

    I'm keeping you in my thoughts and prayers with the hope that your medical issues are nothing major indeed at all.

    And the car...well, you know we're in the insurance biz, right? If you have any questions or want any advice, please don't hesitate to call. We'll help in any way we can.

    I hope today is a MUCH better day!!!

    (((HUGS)))

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  2. Donna, I would have a little flip out too. What the heck is up with his pump??? Foul play!

    Better days are ahead! You are in my prayers dear Donna!

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  3. Wow! You sure have a lot going on! Wonder why the pump is not showing all the info? I hope they can get it replaced, or figure it out for you.

    Also, PRAYING for you that the lump really is NOTHING.

    (((HUGS)))

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  4. Thinking of you Miss Up, DOWN, and all AROUND. I am really worried about you and the lump thing...keeping you in my thoughts.

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  5. Oh boy...First, and most important...Hope that you are ok. Next, stupid car thing :(~ Last, and also most important, Wow! You have had a roller coaster of a start to Sugar Boys school year for sure. I have to admit that I felt like this last year. I was overwhelmed to say the least and felt like they would never get it (at school). But I WAS WRONG! Ally's teacher and school nurse turned out to be AMAZING. There is a learning curve and I know that you have done a great job of educating them. Now, what the heck is wrong with that pump?? (We have the same one, keep me posted!) On another note...I also request daily logs from school even though I can download it all from the pump. I like the check and balance!

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  6. Oh what a day! What's up with the pump??? That's freaky. Keeping you in my thoughts that all is well, all the way around.

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  7. I would have been seething too! I'm glad you got it figured out but WTH is up with that pump? That could have been disastrous!

    I'm sorry things have been so crazy for you. Please know that as you are going forward in this journey - I am following you. Nate is only 2 but next year I will be sending him to preschool. I thank you so much for sharing your journey. I am reading, learning, absorbing and admiring you.

    Great job, mom!!!!!!

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