Tuesday, May 21, 2013

Diabetes Blog Week - Day 7 (Sorta)

So Sunday was too busy for me to find the time to post...and I thought I'd find time on Monday to read some blogs and post on Sunday's topic.  But...life had other plans for me.  So...because I really wanted to blog for each of the 7 days....I'm taking the Wildcard topic for Sunday's post.  My dream diabetes device:

My "Dream Diabetes Device"?  I thought a lot about this and everything I thought of really came back to the artificial pancreas.  Since that is really no longer a dream, just a postponed reality, I decided to go a bit further.  MY dream device is some medical jumper cables that will jump-start a pancreas back into functioning normally.  If it's a dream, why not go all the way for a complete cure, right?

Saturday, May 18, 2013

Diabetes Blog Week - Day 6: Diabetes Art

I must admit when I saw the topic for today I figured I'd be doing a wildcard today.   I have not an ounce of artistic talent when it comes to drawing, painting or craftiness.  But then I remembered the sign my sweet girl made for our door for the month of November and thought I'd share a photo of that.  She did everything but the ribbon as first because she used stick-on letters.  Then came a very windy, tornado-warning type day and the canvas blew off the door and landed in the yard leaving a scattering of letters on the porch and in the grass.  So I stenciled new letters on with paint.  This took me a ridiculous amount of time, due to the aforementioned lack of talent.
 This is the original, all done by my sweet girl.  She started with a plain white canvas.  Stick-on letters and stick-on flowers around the border.
And this is the refurbished version.  The flowers came off, too, so I painted dots in their place.
Happy Weekend!

Friday, May 17, 2013

Diabetes Blog Week - Day 5: Freaky Friday

Today's post is about this:  If you could switch chronic diseases, which one would you choose to deal with instead of diabetes?

My sweet girl has 2 chronic diseases: type 1 diabetes and hypothyroidism.  The first she has had for almost a year and a half, the second for almost 5 months.  As bad as the hypothyroidism makes her feel, I think that diabetes is what amplifies the symptoms of the hypothyroidism.  Pretty crummy combo.  If I could choose for her to have hypothyroidism INSTEAD of diabetes, I think she would be happy with that.  One pill a day, blood draw so far every 6 weeks until the endo gets her levels, well, leveled out. ( Not so easy when dealing with a slowly dying thyroid. ) And some kinda blah feelings.   But there's plenty of that with the highs and lows of diabetes.  So, yeah, hypothyroidism wins.  Bring on the Synthroid.

Thursday, May 16, 2013

Diabetes Blog Week - Day 4: Accomplishments Big and Small

Today's post is to be about the greatest accomplishment we've made in dealing with diabetes.  Obviously, for me. it is not (yet:)) learning how to blog with the best of them.  But this is 4 days in a row of posting a blog...not too shabby for me!

I think my/our greatest accomplishment with diabetes has been our complete acceptance of it.  One form of this is the determination to make the best food choices (almost always) with the goal of her feeling her best.  With the help of the Dexcom we have been able to see how she responds to different foods and different food combinations.  We are continually learning.   Another aspect is that we don't hide her diabetes.  I never want her to be ashamed of it or, as she grows to those dreaded tween/teen years, try to discount her need to continually care for herself no matter what her friends are doing.   We don't try to hide when we test her blood sugar.  She wears her pump and Dexcom in plain view most days (thanks to TooSweetBoutique for the very cute waist pouches:)) and is beginning to answer the questions from others about her devices instead of always turning to me to answer.   I am proud of her.  She handles her diabetes with the maturity of someone much older than her nearly 8 (!) years. 

Wednesday, May 15, 2013

Diabetes Blog Week- Day 3: Memories

Today's post is to be about our most memorable diabetes day.  I suppose that would have to be the day of diagnosis. 
It was New Year's Eve and since she had been out of school over the Christmas holidays we had been noticing that she had been drinking a lot.  And, of course, going to the bathroom more.  She also had wet the bed 2 or 3 times...which she had not done since she was 2 so that really raised a red flag with me.  The day before we had taken a short family trip just to go to another town, shop at a few different stores, eat at a different restaurant.  My sweet girl ate very little.  I had been noticing her lack of appetite and that had been what was keeping me from thinking the drinking could be due to diabetes.  Undiagnosed diabetes usually has increased hunger as a symptom as the body is trying to replace the lost glucose.  I had written down what she ate that day...3 goldfish, 2 French fries, a cup of mandarin oranges.  But she drank whatever we gave her.  I was thinking she wasn't hungry because she was drinking so much.  But the nagging feeling was there in my mind that I need to check her for diabetes.  My husband, in denial, said, "She doesn't have diabetes."  So I kinda felt silly in wanting to check.  But that night after we got home my husband and I were sitting at the table talking and we had drinks on the table in front of us.  My sweet girl came up behind my husband without a word a grabbed his glass of tea and began to guzzle with this look of desperation in her eyes.  And that was the point that I couldn't deny it anymore.  So the next morning, New Year's Eve, I woke up early and took my sweet girl with me and we went to the pharmacy and bought some Keto-Diastix...the kind that test for glucose and ketones in the urine.  We came home and I had her use the bathroom and I tested her urine.  Darkest purple Ketones and darkest brown on the glucose.  My thoughts: I knew it., I don't believe it.;  How can this be?; How am I going to tell her?; I can't cry.  I have to act like this is OK for her.  I told my husband.  I called the pediatrician on call and he told me to take her right away to the children's hospital 2 hours away; the local hospital couldn't help her.  We were to have met my husband's family that day for a sort of reunion/brunch so he called his parents and told them.  I called my parents to tell them and for them to take care of our other children.  We packed bags.  We left.   I was calm on the exterior, but shaking inside.  My sweet girl was nervous and crying a little that she didn't want to go to the hospital.  I let her have something to drink on the way and we had to stop a time or two her to use the restroom, but we made it by noon and were triaged within 10 minutes...the pediatrician I had spoken with had called ahead for us.  The nurses there were amazing.  The nurse who drew her blood got it in one stick and he didn't hesitate a bit...which was amazing since she was a bit dehydrated.  She didn't cry when they drew her blood and started her IV and my husband and I were amazed by how brave she was.  She was SIX years old.   We were in the ER for a couple hours...her blood glucose was 282...not terrible considering this was diagnosis...but she also had been eating almost nothing.  A1c was 12.1.   I remember we asked the doctor of it could be anything else besides diabetes.  "No" was the answer with a smile and a head shake.  She was taken to the top (12th) floor which she thought was pretty cool and we got to watch a few fireworks from up there that night.  The first shot I gave her was her Lantus that night.  Then the next day we got all the carb counting/ high blood sugar bolus information they could fit in.  We stayed another night...which was a memorable and funny (now) story for us to recall.  She had a low blood sugar during the night..like 2 am and they gave her some juice and it came up to just 80..so she needed to eat something with carbs and protein to last her til breakfast....but they had nothing on the floor. So my husband went searching the vending machines and all he could find were some cheese/peanut butter crackers or the kind that are orange crackers with "cheese" in the middle.  He didn't  know which ones she would prefer so he texted me "cheese or toasty?".  Or so he thought.  He didn't get a reply so he bought one and came back up.  He asked me why I didn't reply and I said I had never gotten the text.  Turns out he had texted his sister with the "cheese or toasty?" at 2:30am:).  Anyway, my sweet girl did her best to get down those crackers that she hated, but it took quite a while.     This may be boring.  If you've made it this far, thanks for reading my rambling!

Tuesday, May 14, 2013

Diabetes Blog Week - Day 2: We, The Undersigned

Today's topic (sorry, still no good with the linky-linky stuff) is related to all the petitions that have been circulating recently...pretend to write a petition and tell who or what I am writing to, and what I am trying to change, and what experience makes me want this change.  So, here goes::

To OneTouch Delica Lancing Device:

You need to change.  You house the best lancet to ever pick my sweet girl's little fingers.  Before finding these lancets her fingertips were spotted with previously lanced spots.  Now I have to look very closely to even see any spots at all.   It is super skinny and inflicts almost no pain, and even on a "1" setting it provides a nice droplet of blood to fill the partnering OneTouch Ultra Blue test strip.  You, however, Lancing Device, are not worthy to hold such a wonder.  You feel cheap in my hands.  You are an odd shape, causing me to drop you.  And when you are dropped onto my hard tile floor, your twist-on cap comes flying off, never to hold well to the main part of the device again.   You are truly awful, and I can't believe you come from the same company as your marvelous lancets.  I'll continue to use you...out of necessity, but I grumble each time I do. 

Monday, May 13, 2013

Diabetes Blog Week: Share and Don't Share

The topic for today is "What do you wish your endo could see/what do you hope they would not see if they were to read your blog".  Basically that's it.  I'm still techno-challenged , so if I figure out how to link all the linky things, I'll do that. 

I think, I THINK, I would like for our (her...it's her diabetes, and I know that, but since I'm pretty much the one making 97%of the decisions at this point, I'll call her "our") endo to see everything.  Really, just see all of it.  The basal adjustments, the boluses for highs and for carbs.  What the food looks like on her plate when she has her 60 carbs, the playtime, the whining, the watching TV, the fighting with sisters, the homeschooling, how brave she is for site and sensor changes,  and more specifically to the blog:  how much I care that I do my best and that she learns to make the right choices, that this disease consumes me, how it has become so much of my life and how everything revolves around it.  I wouldn't want her to NOT see anything.  I would love to have input on all that I do and ways to adjust and do better, and areas that maybe I can slack off.  I can't imagine that I would want to "slack off" on anything, but if something I am doing is not doing any good, or is, in fact, more harmful than helpful, I'd love to know.  I think when we go to the endo, we talk about maybe 30% of what makes up our diabetic life.  There's just so much to it.  I think this would be a 2-way thing with our endo.  She is really great and concerned about my sweet girl's LIFE, not just her diabetes and hypothyroidism.  I think she would love to see a "day in the life" because it would be helpful for her to help us make the best decisions for this d-life.         

Friday, February 15, 2013

Sticking with the Dexcom

I wanted to share my new way of keeping the Dexcom sensor attached to the skin.  You'd think that for something that is supposed to last 7 days the adhesive would be stronger...even waterproof.  Especially considering their price.   Because after 2 baths it is peeling up to the point of needing tape or something to hold it on.  We even had to change to a new sensor once because of this. It just came off in the bath! The paper tape I found would do nothing. The tape roll I had from the hospital..the stuff they use to keep IVs in place was pretty rough on her skin and left grey adhesive-goo streaks on her skin that she did not enjoy me trying to scrub off with alcohol.   The IV3000 didn't work for her and I couldn't find Tegaderm in the form of anything other than a bandaid at the store.  I was horrified at the price of the tape rolls (like Rock tape that I had read is great) and Tegaderm that I found online.  So, I found these WATERPROOF Band-aid patches....and they are working  Through baths and everything.  And when it is time for them to come off, they come off with only a little discomfort.  Well, like a Band-aid:)   I just cut out the center padded portion and it fits around the sensor.  So far I have waited until it the original sensor adhesive starts peeling up before using the patch, but next time I may just go ahead and put it on immediately with the sensor change.  If the sensor adhesive is already peeling up you should trim off what has peeled up. The patch is just barely bigger than the sensor adhesive, so if it is peeling up, the patch will stick to the part that is peeled up with only a tiny bit overlapping to stick to the skin.  We are only on our second patch...because it works so well...the first one came up on the edge because I hadn't trimmed the original adhesive.  Learning process!  Here are some pictures:

Monday, January 14, 2013

Dexcom G4 Platinum

Today I inserted my sweet girl's third Dexcom sensor.  So we have had 2 full weeks working with her new (and first) CGM system.  The verdict? We love, Love, LOVE it.  Why in the world are these things not included in the "your child has diabetes...here are the supplies you need" motherload  received when children/families leave the hospital after diagnosis?  It is SO (repeat SO, SO) helpful to be able to see where she has been and where she is going.  I feel like her a1c has surely improved just in these 2 weeks...and we have had some highs (another issue to be mentioned shortly) but correcting is so much easier when it is definitely noticed faster than waiting for the "I don't feel good" that I used to hear a couple hours after she ate or being able to realize that a pump infusion set surely has gone bad when she is not responding to the insulin that I "gave" her.  And catching and treating lows is even better.  To see 5 minutes later or 10 minutes later that she is no longer dropping...to be able to catch the low before she GETS low in the first place is FANTASTIC. 

So...my take on how easy it is to use, etc..:  Well, there is no "training session" as there was with her pump.  We received her Dexcom on our doorstep via FedEx on New Year's Eve...coincidentally her one year diabetes-iversary...quite a gift:)...and got it out of the box...found the "tutorial CD" to insert in the computer and got started.  We watched the CD completely through, then re-watched the insertion steps as I inserted her first sensor.  Very good tutorial and we had no trouble following the instructions.  The only issue I had was not knowing how hard to push on the transmitter when attaching it to the sensor.  Have to be a little more firm with it than I would think and it is hard trying to do this on a 7-year-old's belly when I don't know how it is supposed to feel yet and I don't want to hurt her and she's a bit nervous about the unfamiliar procedure...and (unbeknownst to her) so am I.  But we managed.  I think it would be easier and no problem for an adult doing this on themselves for the first time.  It really is THAT easy.  And...the trick that I learned (thanks to my husband's suggestion after he watched me do the insertion) is for me to stand behind her and insert as I am looking down over her shoulder as someone inserting into their own belly would do.  It is much less awkward that way.  Also...have been doing some reading of others who use the system and they say that they get the best sensor readings on the back of their arm.  The tutorial says to only insert on the abdomen.  SO...will do more research to figure out what is up with that.  Real estate on the abdomen is going to get hard-to-come-by between a sensor every week and pump site changes every 3 days. 

So..the aforementioned highs...she was diagnosed as having hypothyroidism after the blood work done at her check-up at the end of December.  Whatever attacked her beta cells in her pancreas is now going after her thyroid.  Nice, right?  Not.  So, she has started taking thyroid hormone via a pill each morning.  I have read and her doctor told me that having hypothyroidism can make blood sugars hard to control.  Well, yeah, we have experienced that.  And the too-often-stated "I don't feel good" that has left me wondering how in the world am I ever going to send this child to school...maybe I can attribute some of that to a dying thyroid and hope that her new meds will improve how she feels on a daily basis.  BUT...a few days after starting the med (levo-thyroxine) we had some wacky highs.  WACKY.  I mean so bad that I changed out her infusion set a day early thinking it must be that...surely she was not getting any insulin.  But it didn't help.  So I changed basal rates a pretty good bit and that helped.  A lot.   So....she needs more insulin while on this med? I don't really understand it, but if it works, I don't guess I have to.  Besides, who REALLY understands diabetes?  There really is no rhyme or reason to some of the numbers that show up on that meter or CGM receiver. Just have to take the number and use it to get her where she needs to be.