Tuesday, November 29, 2011

Are We Pod People?

Adam has had a rough go of it the last few months. He's always been my happy-go-lucky kid, even after his diabetes diagnosis. Lately, he hasn't been so cheery. He's been sad, mad and angrier than I've ever seen him. Maybe it's being 5 years old. Maybe it's not.

We saw his pediatric ophthalmologist for his bad eye last week and got some bummer news. He has lost some of the vision he has gained in that eye in the last year. Why? Because with the diabetes diagnosis, we let patching slide. There are only so many things in a day that I'm willing to fight my kid on - and diabetes came first. He's been patching since he was 9 months old, and frankly...I didn't have the extra energy to force him to wear a patch that he hated for 2 hours a day.

Well, guess where that got me. He went from 20/40 vision in his contact lens eye to 20/60. His doctor was NOT pleased and has ordered patching for 5-6 hours a day, plus another exploratory vision check under anesthesia scheduled for January.

Now, in addition to having issues with diabetes lately, and being just plain upset about it, he's mad and angry at me for forcing him to wear a patch for all of his waking hours when he gets home from school. He's PISSED.

As in me chasing him around the house, having Jason hold him down while I put a patch on, having him rip it off over and over until he succumbs to his fate.

It's heartbreaking.

He doesn't want to be a kid with diabetes who wears an insulin pump that everyone can see.

He doesn't want to be a kid who has to wear a contact lens and a sticky, annoying eye patch over his eye for 5 hours a day. 

He doesn't want to be different. He just wants to be a kid.

With that said, we are embarking on a new adventure, mostly because he wants it. And nothing else has made him happier since he tried on the Omnipod last week.

We met with the rep last week, who came over and discussed the Pod with me, my husband and my parents. We all asked questions, we all got to test it out. We did an actual insertion on Adam and boy, did he think it was cool. And as an added bonus, he seems to think it doesn't hurt as much as the Insets.

Am I nervous? Hell yes. Have I had second thoughts? Absolutely. I've been awake at night more often than usual worrying about this. About re-training myself. About re-training the nurses at school (I feel totally guilty about switching pumps on them now that they just got the hang of the Ping.) I even got to chat with Hallie on the phone and she answered ALL my questions about switching from the Ping to the Pod. :)

Thankfully, I have the comfort of knowing we still have the Ping and can go back to it if we want to.

But, I am willing to sacrifice a few things for a happier kid. There are so many things about his life that I cannot change. I have to tell him way too often, "I'm sorry...you don't have to like this, but you HAVE to do it."

I'm also hopeful that the fact that it is more user-friendly will allow me to get "out" a bit more. My mom thinks it is so much easier to use, and since she is our only babysitter...well....that rocks.

So, I hope you will all hang with me as we begin this new adventure. We got the go-ahead from his endo yesterday, (after a lecture on how "the grass is not always greener on the other side!") the paperwork is in, and now we just wait for our pods to arrive and schedule training.


Wednesday, November 23, 2011

Thankfully Overwhelmed

I'm feeling a mixture of emotions tonight - both completely overwhelmed and thankful at the same time. I'd love to feel just CONTENT, but that would be too much to ask for, right?

Stressed about prepping for Thanksgiving at my house, hosting 24 people.
     But thankful to have so many friends and family to celebrate with, beautiful weather so we can eat outside, and lots of yummy food.

Had a minor freak-out today when we completely ran out of test strips...even after raiding Adam's lock-down kit at school.

     But completely thankful that his 3 month supply from Medco arrived today, the day before a holiday  weekend.

Stressed that we are choosing to switch insulin pumps.

     But thankful that we are able to CHOOSE and have the ability to switch things up when needed. Did I mention I'm stressed about learning a new system? But I'm excited. And stressed...and excited...and so on.

Overwhelmed that we have a child with diabetes...that we have to make these decisions and it's all on our shoulders.

     But thankful for the invention of insulin, pumps, and that Adam can live a healthy, happy life and we can manage it.

So much to do tomorrow...

     But really thankful that my mom brought over some wine for Thanksgiving dinner a bit early. Sorry mom...I had to break into it. Good thing the stores are open tomorrow....heee!

I'm also terribly thankful for the DOC. Y'all know who you are, and I thank you from the bottom of my heart for helping me through the past year. HUGS...and Happy Thanksgiving!

Tuesday, November 22, 2011

Leaving his mark

I went up to Adam's room the other night and this is what I saw on his dresser. He'd "tagged" his glucose tabs with his name. I literally laughed out loud - that kid is so funny. Despite diabetes, he still does typical 5 year-old things, like writing his name on everything he can. :)

Wednesday, November 16, 2011

Ya know what ELSE I hate about diabetes?

As if there isn't enough to hate about it...

But one thing has been bugging me this week. As a caregiver for a diabetic child, I often feel so alone in his care. And I'm not talking about "alone" in the sense that I don't have support from my family and friends. (And the DOC, of course!) I do. It's just that diabetes is the kind of disease where there is no set treatment plan. There's no 1 + 1 = 2. And let's face it. I'm a girl who likes a clear plan.

There are so many variables. While we all have our endocrinologists, and they can give advice on what to do...they don't always have the answers either. They can't say, "Do this and it will fix it." Half the time I feel like I'm the one driving his treatment and it's a scary place to live. I ask for advice when I need it...but often I'm still left here, drifting in the wind, trying whatever comes to mind to try and "fix" what is wrong with his blood sugars.

I try and try and try different things until I'm left with a cardboard boat, patched with duct tape...sinking faster than I can keep it afloat.

I hate having to make major decisions regarding his care alone. People and doctors can give advice, but it comes down to what we, as his parents think is best. Isn't that scary? It really is to me. 

Today, again, he had a bummer day at school. His site pulled, he had a hard time pricking his finger because the Multiclix was stuck, he wanted to get out to recess, but his BG was low. And he cried. He told the school nurse he wished he didn't have diabetes. That made me sad.

I want him to be happy. I want to make this easier for him. I will do whatever it takes to allow him to play like a regular kid and not have to worry about all of this stuff so much. It's my job to let him feel as free as he can, and if it means investigating another pump after only using the Ping for a year, we'll do it. I was completely opposed to it a month ago, but after seeing him break down today, I'm open to it.

This is all so hard. There is this huge neverending-ness to diabetes. Even when you think you have it all figured out, you just don't.

Tuesday, November 15, 2011

New Pump on its Way!

I still have no idea what is up with Adam's blood sugars...judging by the numbers, his endo thinks something isn't working. Animas says it is. BUT the moment I mentioned that the little plastic cap on the radio button came off (gotta love 5 year olds) she said, "Well, we have to send you a new pump because it's no longer waterproof!"

And really, even though he's only been pumping since January, his pump looks like it's been through WW3. Seriously...the sand alone that gets in that thing. I have no idea how pumps are supposed to last 4 years on small children. Wild ones, like mine, that is!

So, we shall see. One thing that really made some sense was regarding his infusion sites. He uses the 6mm Insets, and honestly...he pulls on his sites A LOT. She said that the tugging is enough to remove that short cannula from it's place without being obvious. We may have to switch to the Contact Detach sets. Who uses those? Are they as easy as the Insets? Do they hurt more?

This also leads toward a discussion we have in our home right now regarding switching pumps. Jason is gung-ho to switch to Omnipod. Especially since the new release will have the IOB feature fixed (so said the rep a few weeks ago - is this true?) I'm not ready to turn our lives upside down again AND train the school AGAIN.

However, it's starting to become a quality of life issue for Adam. He HATES the tubing. Hates it with a passion. He pulls it, twists it and cannot keep his hands off of it (which makes me wonder how often his numbers are bad because he pulled the cannula). He has trouble dressing himself with the tubing, and has gotten the tubing twisted in his..uh, man parts....more than once. Sounds painful to me. :)

We are coming to a crossroads - he is becoming more vocal about what he wants. We showed him the Omnipod and he was ALL for it. In fact, he said, "Wow....I could be like a super-spy diabetic person! No one would know I had diabetes!" So, that kind of stuff is becoming important to him, and I wouldn't be a good mom unless I acknowledged it.

I'm not sure where it will all lead, or when/if we will switch...but it is on our radar for now. So much to think about.

Monday, November 14, 2011

On WDD...help?

So it's World Diabetes Day. We commemorated the day by wearing blue....and going back on MDI (kinda).

Le sigh...maybe someone can help me. I'm at a loss. You all saw Adam's 600 number last week...well, that trend has continued. It is rare that I can get him out of the 300's most of the day. This weekend was the straw that broke the camel's my back.

Both Saturday and Sunday he was in the 300's. Both days I employed the use of temporary basals...on Sunday to the tune of +150% most of the day. Never got below 300, often he was in the 400's and 500's.

He just saw his endo a few weeks ago. At that time, he increased his basals across the board by .025, which was fine. When he started having highs last week, I increased everything again by .025 so that now most of his basals are at .400/hour. For reference, his breakfast I:C ratio is 1:16, and the rest of the day is 1:20 (and I really don't think I need to change them...but who knows.)

So last night, I'm pissed at the pump and I give him an injection before bed - which brought him down in range beautifully and quickly. And I do realize that an injection will generally work quicker than the pump because of better absorption, but it made me wonder if his pump is not working correctly. I've changed his sites both Sunday and Saturday (and I'm about to do it again tonight). No bent cannulas, no blood in the cannula.

This morning, he woke up at 185, I pre-bolused breakfast at 6am, but by 9am, he was 300. I emailed his endo this morning and he did not want to willy-nilly change basals right now, but to keep his pump on for basals today and bolus him via injection. So I did that for lunch, and by golly, he was in range at his next check.

I fully realize that pump failures are rare....but why would injections keep him in range, but his pump doesn't? I'm not sure what to do next. I'm doing injections tonight....changing the pump site, and then going back to the pump tomorrow to see if anything has changed.

Arrgh. My brain hurts. Why does this all have to be so damn hard? I'm incredibly frustrated and I HATE having him be in the 300's for as long as he has been. I'm so confused. We rotate sites...fresh insulin in the pump every 3 days...no ketones at all (thank goodness!)

I'm finding it hard to trust in our pump right now. I am having the urge to go back to MDI because at least I know the insulin is getting in there. 

Thursday, November 10, 2011

Diabetes Walk...and other schtuff

Our walk was a week ago? Sheesh. We had a super busy weekend and week, so I'm finally getting around to some posting. And, also? Adam's numbers are completely whackadoodle. I have no clue what is going on. More on that later.

It was a little chilly on our walk day! And it was wonderful. The ground was soggy and Adam had mud all over his body within 5 minutes, but he loved it. We had a small group, but Adam was SO THRILLED that his best buddy from kindergarten came to walk with us. How cool is that? His mom is familiar with Type 1, and has been so supportive and interested in what we do. The fact that she brought her son and little girl out on a cold, wet morning meant so, so much to me. I mean, we all know how rare it is when you tell someone about Type 1 Diabetes and they "get it" right away...but she did.

How cute are they?? Adam loves his friends fiercely, and this little guy loves him right back. Makes a momma swoon.

It was a nice family day. After the walk, we checked out the booths and Adam got a cool new "camo" skin for his meter and pump while I was talking to the Animas guy. See?
Oh...um...yeah, that HIGH GLUCOSE thing...we'll chat about that later....

So, here I am talking to the Animas guy about how Adam MAY or MAY not have a hairline crack in his pump, when my husband comes bounding up behind me with a fistful of Omnipod stuff, yelling, "Hey! HE SAID WE CAN SWITCH FOR ONLY $150!"

Yeah, so at that point I pretty much grabbed the camo skins and ran. :) Insert foot in mouth, much?

The Omnipod discussion is for another blog post, entitled, "The One Where My Husband and I Argue About Pumps."

Anyhoo, we enjoyed some free food, free stuff and fun music. And then enjoyed doing a site change in the back of the SUV on an EXTREMELY cranky boy who was high even after the bounce house (this is called foreshadowing.)

But never fear...his sister had him laughing by lunch time:

Okay, so this post is all over the place, but I'm just going with it.

WHACKADOODLE = Adam's numbers. During and after the walk, he was high. 300's high. Sure, he had a little cold, but what kindergartener who is in a cesspool of germs 8 hours a day doesn't? All weekend, and on Monday, I kept correcting, doing temp basal increases, you name it. Then Tuesday came. At his 9am check, he was 474. Full insulin dose for snack (we usually do half because of recess) and correction. Lunch, he's still at 380-something. Then at 12:30, he's back in the 400's and I pick him up from school after doing another site change and correction.

Then, about an hour after we get home, I get this:

Never have seen that before and it scared the shit out of me. And no ketones! (an aside...you all of your kids automatically get ketones when they are high? Adam never, ever does. Even after days of being high. Is that weird??) He said he had a tummy ache, but that was it. I ripped out that site, put a new one in his tushie with a fresh bottle of insulin AND gave him an injection. Which he totally hated, by the way.

So, finally by dinnertime he's fairly normal.

But, WAIT! Guess what is behind Door #2 at bedtime?

Yes, you d-mama's guessed it...a LOW. A persistent low. Mother-effer.

And now, ever since Tuesday, his numbers have been all wrong. No rhyme or reason. Nothing. High last night, low tonight. Why, why, why? I just don't get it. It's like that wonderful A1c we just got is mocking me.

Yes, Diabetes mocks me.

Thursday, November 3, 2011


Aaack! I don't really have anything substantial to post...but, I just had to get my toes off the top of my blog. :) They looked fine on my cellphone...but dude, on my computer screen...ugh, just....NO.

I can't believe that Halloween was just on Monday...I have been out in the stores this week and it seems like the holidays are already in full swing. I hit a department store today, and the Christmas trees and decorations were all up! Crazy. I mean, I LOVE Christmas, but I'm just not ready to jump into it yet.

In other news, our JDRF Walk is on Saturday! I'm looking forward to it - it's going to be COLD out! Yes, I am nuts, but us desert dwellers rarely get cold days. We will have a small group this year, but two of Adam's buddies and their moms are walking with us, and I am thrilled for him. It will be a fun morning!

Okay, I think I've written enough to get those darn toes off the top of the page. :) Happy Thursday, everyone!

Tuesday, November 1, 2011

1st Annual Type 1 Day

In honor of the first annual Type 1 Day and for Diabetes Awareness month (hello, NOVEMBER!), I'm showing you my feet.

I can't even claim any sort of credit for this idea...I shamelessly stole it from the lovely Donna. Once I saw HER toes on Facebook, I knew what I was going to be doing on 11/1/11!

Plus, our JDRF Walk for the Cure is on Saturday!!! So, why not have pretty toes for the event in support of diabetes awareness? I've already gotten quite a few comments today, and it's fun spreading the word about T1D and the need for a cure.

I've already done a lot of educating the last few days - whenever Halloween rolls around, we get tons of questions about whether or not Adam can participate.

The answer is YES! He can eat whatever he wants. Well, whatever *I* will let him eat, as his mom. :) As long as he has the appropriate amount of insulin to cover the carbohydrates he has eaten, he is golden. He had candy last night, and yes...he had a piece of candy this morning before school. Diabetes doesn't stop him from being a kid - the only difference is that he must have the right amount of insulin to match whatever he eats.

Can you imagine having to do that for the rest of your life...carefully tracking every morsel you put into your mouth? That's why we need a CURE. So that Adam doesn't have to be hooked up to a little machine 24 hours a day, 7 days a week just to live life like we do.