RIP Pump #1

On Friday afternoon I got a phone call from C letting me know that while swimming (with his summer day-camp), he noticed his pump’s screen was filled with water and he couldn’t get it to turn on.

Yes, that’s a small lake of water in the bottom of the screen

*Yes, the Ping is waterproof.  Yes, I’ve let him swim even with the new one already.  No I don’t think it’s a problem.  C’s Ping has been in the ocean, many swimming pools, jacuzzis (oops! taken off quickly), and water slides and lazy rivers at the water park.  I completely trust its waterproofness.  I later discovered that there was a small tear in the rubber covering the buttons that allowed the water in. 

I called Animas and a new pump was scheduled to be delivered the next morning.  It would end up being about 18 hours later.  I tried to get a hold of his Dr. and another Dr. that he’s seen to double check the amount of Lantus I should give.  I didn’t hear back from anyone for about 3 more hours.  Only 15 hours left until he should be back on a pump.  As soon as the pump should have arrived, we were to be jumping in the car and heading to Dodgers Stadium for the game.  I did not want to deal with overlapping the Lantus and the pump’s basal.  I didn’t want to deal with trying to figure out when the Lantus quit working and the pump started.  I would’ve been happy to under normal circumstance, but not while we’re out trying to watch baseball and eat stadium food in under the blazing hot sun.  I wanted “easy.”

This may or may not be for everyone, so please don’t take advice from me…  I decided to forgo the Lantus and just give corrections every 3 hours. (Yes, I checked with his Dr. to make sure they thought it would be ok FOR US)  It ended up going really well and his numbers were suprisingly “in range” (I’m calling under 200 “in range” when we’re talking about no basal).

At bedtime his number was 117 and he wanted something to eat.  It would’ve only been about 3/4 unit of insulin to cover it and he didn’t need a correction.  I was torn as to whether or not he should give another shot.  I decided against it being that we’d be correcting soon enough.

When I walked in his room carrying a meter, alcohol, a syringe and a vial of insulin I felt fine.  I moved his blanket to find his hand and immediately it hit me.  My son looking so perfect was falling apart on the inside.  I knew his body was being ravaged from that stupid GoGurt he ate.  I realized how the pump masks the issue so well.  Sure there are highs and lows but they always seem so easily treatable.  Knowing there was no pump and no basal, the reality of what would happen if my son didn’t have insulin hit me very hard.  My stomach was so tight waiting to see his number 347 pop up and the 0.7 right after on the ketone meter.

I had to try to wake him from a deep sleep, get him down from his bunk bed and into my room so he’d wake up enough to give himself an injection (he did not want to grant me permission to do it in his sleep).  Two hours later he was in the low 200s with no ketones and had to get up to give another shot.  He was hovering around 100 when we woke up and 97 three hours later when we were getting ready to leave for the stadium.  It’s really interesting seeing how the body reacts when it’s in shock like that.  His numbers were actually super manageable.  Not what I’d expected.

p.s. whole other story but…. UPS didn’t get his pump delivered in time for us to have to leave.  Luckily I text messaged the rep in Los Angeles who we’ve gotten to know pretty well.  He met us 15 minutes away from Dodgers Stadium to hand us a loaner pump.  What a blessing!

Alexis’ MeMe

Alexis Wants To Know!

I bore my kids.

For informative purposes: C is 11 years old.  Diagnosed with diabetes July 2009, just after turning 10.

When did you guys start pumping?
He started pumping in January 2010, almost 6 months after diagnosis with the Animas One Touch Ping.

What do you use to change sites? Whats your “process”?
We use IV Prep but that’s about it.  If it’s a bleeder when we peel it back off, I’ll use some Neosporin.

How often do you check ketones?
I check for ketones if he’s reallllly high and feels sick.  Or reallllly high and a correction doesn’t bring it down (after and hour and a half or so).  Or when he’s just ‘regular’ sick.  Sometimes if I realize that he’s been high for a while (last few BG checks) we’ll test.

When do you do an unscheduled site change?
We pretty much don’t.  They used to get pulled off of his tummy a lot, but now he won’t allow them there.  On his upper booty, they don’t get pulled off.  A few times I’ve changed early due to persistent highs or persistent highs with ketones.  I always wait out at least one correction before doing so.  As long as I have patience, it has usually worked out.

Whats your childs target?
daytime is 90-120.  Nighttime is 140-170.  Those are the settings in the pump at least.  I let him go to bed as long as he’s over 100, and has no insulin on board.  I’ll recheck soon enough anyways.

What was your childs last A1C?
6.9

What kind of strips do you use?
OneTouch

Which do you prefer?
We only use OneTouch.

What kind of Peanut Butter do you use?
Jif Creamy. Or Jif Natural Creamy.  C hates the Natural though and can always tell the difference.

Do you allow juice when not low?
Yep.  Sometimes he drinks a juice box with his lunch.  He drinks ‘em when he’s headed out to the trampoline, riding bikes, whatever he does.  He definitely ends up drinking juice.  Recently, he was feeling sick of diet coke and even had a REAL root beer at a birthday party…just bolused for it.

Do you still check your child at night?
As long as I’m not so exhausted that I sleep straight through my alarms, I do.  I usually check 1-2 times after he goes to bed.  Typically this is around 11pm and 3 am.  We wake up (on weekdays) between 6:30 and 7:00am (again sleeping through my alarm that goes off at 6:00) and check then.

What is your rule on sweets?
Not many rules.  Check the ingredients for gluten, check on a real carb count (not guessing) and TRY to eat something else with it… protein or something to slow it down.

Regular pasta or whole wheat?
Neither.  Brown Rice pasta

What about veggies and fruits?
My kids live on fruit.  C eats salad, carrots, cucumbers…  No cooked veggies though, only raw.

White bread or whole wheat?
Both have been banned from our house.  We only eat Udi’s Gluten Free MultiGrain

Do you use glucose tabs?
Yep.  We use whatever’s got sugar, but the rolls of glucose tabs hold 3 quick fixes and fit in his pocket easily.  He also doesn’t have to worry about people wanting his candy for a snack.  Oh, and HE’s less likely to eat it as a snack…

What do you use to treat lows?
Whatever we’ve got around.  Glucose tabs, juice, smarties, Swedish fish, sour patch kids, lemonheads, gummy jolly ranchers, milk, yadda yadda yadda.

What does your child use to hold their pump/cgm?
his pocket.  When he doesn’t have a pocket, he just uses the clip that came with the pump (well, that one broke…I think we’re on number 3 or 4 now).  No CGM.  Insurance doesn’t cover it and he won’t use it if it means carrying something else.  We’ll wait for Animas to hook up with Dexcom in one unit.  THEN we’ll push for it.

drink your gatorade.

Last Saturday, July 17th, was C’s one year anniversary with type 1 diabetes. Not actually true since we saw very strong symptoms over a week before his diagnosis, but it marked one full year of knowing what we were dealing with.
A local group, Diabetes Outdoors, was having their annual beach day the same day. It sounded like a perfect way to celebrate how far we’d come in that year. And it was. Lots of fun, perfect weather, perfect water and lots of kids and some adults living with diabetes.
However, C refused to let me put sunblock on him. Since he’s never gotten a sunburn before, I didn’t really think much of it. I was more concerned with trying to remember to test him and carb him. After seven hours in the sun, even he with the perfect olive non-burning skin, had a horrible sunburn. The next morning he felt sick. I assumed it was from the sun. He had a low fever and couldn’t finish the raspberries he bolused for for his breakfast. Had to take glucose tabs to cover the rest. For the next few hours he layed on the couch feeling nauseaus and not doing much. I kept testing his blood sugar and it was between 60 & 90 most of the morning. It was a little nerve wracking trying to keep it higher since he didn’t want juice or anything else in his stomach. He had juice once & vomitted shortly after. I fed him 2 Smarties at a time for a few hours. What’s that a carb every 10 minutes or so?
It was a few hours when it hit me that even though he was low, maybe I should test for ketones. Pulled out the meter and guess what… 1.8
HO.LEE.SHIT. I hadn’t even suspected this issue earlier. He hadn’t regular-sick in the entire year before this. I’d never dealt with sick AND diabetes together. I called and left a message for his doctor at home letting her know he was vomitting and had large ketones. What should I do?? We’ve dealt with ketones before. We normally give about one unit of insulin and a ton of water. BUT, I certainly didn’t want to give insulin if his blood sugar was only 80 and he couldn’t drink water and keep it down.
After an hour of not hearing back from her, I gave 0.50 units of insulin. Blood sugar was just above 80 and I kept feeding him the Smarties.
I also pulled books out and started trying to read what I should do. Unfortunately people tell you to call your doctor. Hmmm. I also read that ketones over 1.0 for over 3 hours can lead to serious DKA. I tested again and got him down to 1.3. Blood sugar was 122 and I gave one unit of insulin. Decided I’d test like crazy and get our asses to the ER as soon as it started dropping too low.
A bit later, I gave him another juice box. He told me he’d drink it in the bathroom by the toilet. Twenty minutes later, he still hadn’t had any of it. I retested his ketones and it was 2.1. Found out that 15 minutes earlier he suspended his pump after hearing me say that we needed his blood sugar to come up. I freaked. Poor kid, I scared the crap out of him yelling about how he’s never ever allowed to touch that pump without checking with me all while running around the house grabbing my purse, the meters, whatever we’d need. Grabbed him and ran to the car headed for the emergency room. As I said before, we’ve dealt with ketones. We’ve cut them off before they could get any headway. I’ve never seen a 2 on the ketone meter. At this point, did I think I had a huge chance of losing my son? Yes. The only other time in my life I was that scared was the morning of his diagnosis thinking he was going to die in the waiting room.
We got to the ER, let them know why we were there and he was in a bed in under 2 minutes. The Dr. came in and after talking about everything his thought was this. C became dehydrated yesterday at the beach. From there, the ketones started and even though I was giving insulin, it wasn’t going to help without the fluids in his body. They put him on an IV with just saline and pushed some anti-nausea meds through it. That was it. He was fixed. We were home four hours later. He felt great, woke up with in-range numbers and life went on just like normal.
Here’s the part that’s stupid. I always have given gatorade as his extra carbs when he’s active. Last month at the pool, he couldn’t be bothered by drinking 1/2 a bottle at a time. He refused, so I just gave him 2 glucose tabs. Easy breezy. Since then, it’s just seemed easier to slip him a couple when I think he needs it. It doesn’t disrupt his playing and he doesn’t complain. However, now I see exactly why gatorade is so much better than just plain sugar. If we’d used it, we probably wouldn’t have ended up in the hospital.
Lesson learned.

I Love Today!

I had butterflies in my stomach all morning.  Scary, nervous butterflies.  C’s endo apt was today.  We’re supposed to get the results of his Thyroid Antibody test.  His thyroid was enlarged and he had a few other symptoms.  Not really a big deal in the long run, but still.  He’s tired of being diagnosed.  He’s so great at keeping a totally normal attitude despite the fact that he can’t eat most of the foods (gluten) that people eat around him, the fact that he has to prick his finger all day, the fact that he’s attached to a machine that delivers his insulin instead of his pancreas doing it.  It just rolls off his back like nothing.  But when he heard the idea of one more diagnosis when his life was just getting back to normal, he got pretty upset.  The idea of having to take pills scared him as much as the thought of needles did when he got the news about diabetes.  It was heart breaking.  Today we went to the Dr. and I was prepared to be as positive and light-hearted as possible to ease his pain when they broke the news.  Only they didn’t.  His levels were perfectly normal.  We cheered of course.  What a crazy relief!!
Then, onto the next order of business.  The last 3 nights C’s had some unexplainable high blood sugars.  I changed his infusion site and they got worse.  But… in the daytime they’ve been great.  Until today.  He came home from school about 9:30am with small ketones and BG 346.  I did not give a correction dose.  Dr. likes us to correct only at meals and bedtime and there would be no getting away with it even if I tried since we were going to see her.  Except and hour and a half later, while in the waiting room, he drops to 65.  What the?  Ok, so apparently the site is ok and the insulin’s working still?  Whatever, I’m still confused, but she was really excited to see the rest of his numbers doing so well!  She decided to wait before making any basal changes this time.  We’re just going to try a new vial of insulin.
Here’s the icing on the cake.  His A1C was 7.4.  It was 8.2 in November.  Before that, they did it in the hospital and didn’t bother tellling me what it was.  I wouldn’t have known what it meant at that point anyways…  BUT, I’m so excited because he’s been on the pump for a month and it’s changed everything.  I know that the majority of what brought it down happened in this last month.  Just imagine how much more improvement we’ll see on his next one!

diabetes

last wednesday and thursday C didn’t feel well. this was after a week of me noticing he had to pee more than often and was continuously thirsty. friday morning i decided to take him to the dr. to get screened for diabetes. when we got up he looked close to death. in about a week he’d lost 10 lbs., he had no energy, could barely walk and couldn’t even talk because his saliva was so thick and sticky in his mouth. it was like a mouth full of glue. sure enough, my fear was true. his blood sugar was higher than the meter could even read (over 500). Normal is around 100. We were sent to the e.r. for saline and insulin and then was transported via ambulance to santa barbara to the pediatric icu.
he was so tired and sort of confused. he slept the entire day. twice he woke up hallucinating and screaming and it was hands-down the scariest thing i’ve ever experienced. they told me it was normal and he had no recollection of it later. his blood sugar kept going up high, then down way too low and right back up. Today (Monday) it seems to be fairly regulated.
Poor C has always been scared to death of needles and after the first day, had been poked so many times he was already used to it. Today I was learning to give them to him myself. We’re getting a heavy-duty crash course where we should be leaving this hospital almost on an expert level. There’s almost no time to even get too upset at this point. There’s always someone coming in to educate us on another part of it. I just can’t wait for another month because i know we’re going to be feeling a LOT better at that point.
I’ll be back on once i’m home to add some photos from our stay here.