Friday, February 22, 2013

Be Prepared

Back in August I volunteered to be the "check in" person for my son's scout troop for this weekend's ski trip. I haven't done this job before and I have a new found respect for it. What on earth does this have to do with the d-word????
  • I've not spent a weekend away from Alex since she was diagnosed (except when she has been at camp).
  • Being the sign up person requires a lot of organization and communication, especially when you have 50+ people attending and several new families attending with a bunch of questions and then cancellations, additions, making sure paperwork is in order, making sure fees are understood and paid (especially when a few policy was recently changed), and constantly figuring out if we have enough drivers when the number of attendees fluctuates due to illness, bad grades, new scouts, etc.
  • My son has had the flu this week and his attendance has been in question and then there is the concern Alex will get the flu and then would I be comfortable leaving her with the flu and diabetes?
Would I have done this when Alex wasn't on the pump? You bet not!

So, last Tuesday, I attended the ADA School Walk for Diabetes at Alex's school. As we were standing there listening the nurse make a presentation, Alex whispered to me that something was wrong with her pump. I looked at it and it had a dead screen. Nothing we did made it respond. I disconnected her and walked to the health room to retrieve a fresh battery. I assumed (you know what happens when you do that) that we missed a low battery alarm and quickly changed it out and re-primed and all seemed happy. 

Exactly one week to the day and time (no really!), Alex noticed her pump was dead again. She was at school without me this time. She went to the health room, changed the battery and it started back up. When she got home she mentioned it had needed a new battery again. While I thought it odd, I thought maybe the battery I used was old/expired and the way she worded it made me assume she had a low battery alarm and changed it. There is that assume word again.

Wednesday morning, Alex was leaving for the bus and happens to mention the pump died without alarming her. I realized then that something must be wrong. I wanted to call Animas but I had put her on the bus. I knew they would ask me questions and want me to have the pump with me. So I decided to wait until she got home from school. I called Animas as soon as she came through the door (at this point the pump was working fine). 

Animas has some great tech support people (completely different than my experiences with their billing department). I didn't see ANY cracks or corrosion in the battery chamber. There are no low battery alarms listed in the history since January 24th (which I remember and we changed). The tech said they were overnighting me a new pump...only it was past 6:30 and they couldn't ship until Thursday which meant a Friday delivery. She advised us to stop using the pump and use a backup plan...shots...

Now this is where I make some decisions that are questionable and I strongly urge you NOT to follow. Alex was distraught over shots. The pump was working. I figured it worked for a week after the last battery change. We have Dexie helping us with high and low alerts. I decided to check her every 2 hours including overnight and keep pumping. Thursday morning, Alex's pump seems fine and her BGs are awesome. She heads to school. Within 20 minutes I get a phone call that the pump is dead. 

I get off the phone and start gathering up syringes, Lantus, Novolog, Alcohol Wipes. Then I start making my brain revert back to shot calculations. I can do carb ratios and corrections with Novolog. I have no idea what to do with Lantus. Why didn't I ever ask? I call the endo and ask for the on call doctor. They transfer me to a message line for the nurse. Really? This isn't an on call issue? Whatever I guess! The nurse calls me back and they explain to total the daily basal amounts in the pump and give her that in Lantus right away. That would be great...if I ever wrote down the basal rates on the pump. They are in the dead pump. So not prepared.

After a little while, I remember I have it saved in Diasend, log in, and find them. My basal numbers match the nurse's numbers and I now know the dosage. I head to the school with all stuff in hand. As we are waiting for Alex to come from her classroom, the nurse mentions her pump is in her drawer and she took the battery out because it was making alarm noises. My eyebrows raise...I thought it was dead?

This is the second part where I make decisions I urge you NOT to follow. I pull the pump out and reinsert the battery and prime it. It appears okay. Alex appears. She seems okay with the Novolog. When I tell her she is getting a Lantus shot, she completely panics. She always hated Lantus. It stings and she gets huge red spots. We've tried Levimir too and same result. I'm looking at my distraught daughter, a bag of shots, and a pump happily showing me a normal status screen. I decide to hook her back up to her pump. I tell her to test in ONE HOUR and call me no matter what.

I head home and lament my woes on Facebook. A super awesome mom from a local support group offers to loan me her daughter's old Ping pump for peace of mind. As I am making arrangements to pick it up, the phone rings again from the school. The pump is beeping and alarming low cartridge (not true) and just not acting normal. They immediately disconnected it before calling me. I tell her to hang tight (her BG is fine still) and I meet this awesome d-mom to pick up the loaner pump. Then I drive to the school and we hook her up to the loaner pump.  Her face of happiness at no Lantus was priceless.

This morning, a new pink pump arrived via UPS. So..I'm hoping we've put this chapter behind us. Something I want to note that another good d-mom pointed out....it was just plain STUPID to keep using that pump. What if it primed or gave her more insulin as opposed to none? The way it was acting who knows??? My fear and my pain over her face over the Lantus should NOT have won that battle. And why am I willing to post this on a blog? Because I want anyone to read this know we all do things sometimes that we look back and realize weren't the best decisions. It's how you react to your choices...not the choices themselves that you make necessarily.

Anyway...so back to scouts...in the midst of these 2 days of pure agony and stress, I've been having to make a bunch of other plans and decisions for the trip. I've had to listen to people praise my efforts for planning and people complain about policies in place over fees, driving, etc. Having to drive 30 minutes to get a loaner pump and ensure I get it back to my daughter before she ended up in DKA in a hospital bed while dealing with all of that...puts THAT in perspective. In a twisted way, it made this whole check in thing easier. I'm not sweating any of it. There are BIGGER things in life people than a ski trip and having this paper or that fee how you want it.

And, while I might be very prepared for a scouting trip, I ought to be VERY prepared for the d-word throwing anything and everything at me when I least expect it...like a dead pump.

Friday, February 15, 2013

It's the little things...

It's the little things that we used to not think about...that now aren't so "little" anymore. Yesterday was one of those cute "half days" for school. I don't know why they call them half days because they go to school for 2 hours. I'm pretty sure my math skills aren't so bad that I can't figure out that isn't actually half of the day. And you wonder why Arizona schools are failing?

Anyway, it was also Valentine's Day. Alex had donuts, milk, a cookie, and lots of candy in the 2 hours I sent her to school. She came home 244. In years past, we would have just looked at her Valentines filled with candy and not shrugged a shoulder at her popping a mini box of nerds in her mouth or a fun dip an hour later. It was Valentine's Day. We like to say she is like everyone else...but when your 244 with 2 arrows up...you're not. And you have to think about which Valentines to eat and which ones to save and which ones make good low sugar savers.

So, we had a semi-healthy lunch filled with protein and she played with a friend most of the day. They rode bikes and did all the normal things 10 year old girls do. Her blood sugar was a nice 111ish most of the day once it came down from the Valentine party fest. 

Around 6 PM her friend's family invited Alex to dinner out with them. I said okay...and then learned they were going to a Chinese restaurant. And boom...that is going to wreck out little 111ish numbers. And, there is no way to count carbs accurately for Chinese food that isn't a chain restaurant with semi accurate carb counts listed! And, I'm not going with her to visually assess what she eats. But I'm not going to say no...because as much as my stomach was churning over this bit of news, I'm determined that I'm not going to say no to something because of the D-Word unless it's just not safe. This is safe...just a royal pain in the ass!

So they go to dinner, and I wait for the texts. After 20 minutes, I call Alex. They've apparently ordered...
  • Steamed Rice
  • Teriyaki Chicken
  • Chow Mien
  • Egg Drop Soup
  • Some Vegetable thing
Oh, and they are eating family style so not sure about portions really until it comes (which is why I didn't get a text). I REALLY don't know what to do. And I know whatever I do, it's going to be wrong. I'm asking Alex questions and finally the mom comes on the phone. I tell her that basically she should bolus 65 if she is only eating 1/2 cup a rice and 95 if she eats 1 cup of rice. That's the best I can figure. She says okay. 

10 minutes later, I get a blurry picture via text. 


Now how and the heck am I going to judge that? I can't even see if that brown stuff is rice. Or is it just the white stuff? And how big is the plate really? I don't want to call the mom again and make her scrutinize the dish for me. It's Valentine's Day. She is out with her husband, her kid and my kid. I'd like her to keep inviting my kid places (they have been super awesome with Alex and taken her to the mall, a sleepover, etc.) I can't hound her for nutritional info she doesn't know either.

And then I get 2 texts in a row. How many carbs? Clearly my 65 or 95 was not comfortable to the mom I talked to. She didn't want to make the call. And I didn't either if I'm being honest!!!! I don't know!!!! I start having my mini meltdown at home in my room with my phone. If I bolus to low, she'll be sky high all night. If I bolus too much, she'll drop like a rock. But there is just no way I can know what carbs are in this dish from 5 miles away and a blurry photo. So I just write back "bolus 70" and gulp. Hopefully I didn't screw it up too much, right?

Alex comes home and is 234 with an arrow up. Not horrible. I set basal up 20% and hold onto Dexie. 30 minutes later it alarms with double arrows down. 84 and dropping with 4.33 units on board. Shit, I shouldn't have set the basal up. I'm just used to rice doing bad things to her. I turn the temp basal off and have her eat a fun dip and a 4 oz. apple juice. She drops down to 60 but comes back up. Then by about midnight she is 270. 

It was a long night...I know I didn't do the most perfect corrections and choices for carb counts. But what can I do? It's a learning experience. But it's just the little things that tick me off...like wishing I could just hug my kid goodbye while she goes to have dinner with friends and not worry about carbs and corrections.


 

Friday, February 8, 2013

Complacency

Complacency...a feeling of contentment or self-satisfaction, especially when coupled with an unawareness of danger, trouble, or controversy.

Every once in a while I think complacency creeps up on us with diabetes - that I can solve a blood sugar problem based on assumptions one should never make without going through precautions before taking action....like last night...

I was super rushed as we always have a busy Thursday night routine. Ben is after school until 4 PM. I have to feed dinner to the kids at 5 on the dot to get out the door at 5:30 to get Alex to her volleyball practice. There is no room for error or I am late picking someone up or getting someone somewhere else.

Alex came home from school and she was 78. She had her normal crackers and cheese snack after school and we spent the hour studying for a science test and on her times tables. Then we scurried to the car to pick up her big brother.

We were home at 4:30 and I had to start gathering what we needed for volleyball practice; help Ben with his project for school; and start dinner. At 5 PM, it was time for dinner and about 1.5 hours since Alex last tested and was 78.

She tested for dinner and was 303. She calibrated Dexie who thought she was 212. I was in the middle of helping her brother and finishing his dinner and didn't think much about it other than the fact that it was odd for her to be so much higher in 1.5 hours with just cheese and crackers amounting to 10 carbs which she bolused for and was 78 at the time. Her pump began alarming that the cartridge was low. I immediately thought that her site was probably old and that was the reason for the 303. As she ate dinner, I popped in a new cartridge and a new site on her other arm and figured all would settle down in the next hour or so.

Still thinking about being on time and what my son had left to do for his school project, we hopped in the car for volleyball without checking our diabetes bag for supplies. I assumed I had everything.

We pulled up to the school and Alex tested as usual. She was 231 and all seemed to be going in a good direction. Off to practice she went as I held Dexie (AKA DexCom G4) and watched it's little constant arrow and played with my phone on the bench.

About 10 minutes in, the girls were running laps hard. While on my phone, Dexie started screaming with double arrows down and showed Alex at 191. I figured that wasn't a big deal...191 wasn't even her target number so good that she was going down but she ought to test.  I pulled her off the court to test. 73 and double down. I entered that number in Dexie who then shut off asking for blood in an hour. Great! And then I checked her insulin on board. 4.55. My heart sunk. I've never had double down arrows...a low blood sugar...and that much insulin on board...and she'd been running hard.

Alex was crying at this point about missing practice on the sidelines. She was shaky and pale. I was shoving glucose tablets and a QuickStick at her. 15 minutes later she was 60. Not going in the right direction! And to add insult to injury her meter started alarming that the battery was low. I checked the bag and had only 1 lithium AA battery for her pump. Her meter takes a non-lithium battery. So it wasn't dead but it sucked because what happens is that you insert a test strip and the stupid thing goes to a screen for low battery instead of the apply blood screen. In our panic and rush, we were sticking blood on the strip on the low battery screen instead of the apply blood screen and then it would error. Then we'd apply blood right and her blood was all watery and thin and wouldn't stick to the strip. Then it would error. I think we went through 12 strips in all during the practice.

Needless to say, Alex never returned to practice. It took 12 tablets and 1 QuickStick to get her number to 93. She never rebounded and went high that evening and I even bought her a mini milkshake on the way home to cheer her up (which we did bolus for).

The only thing that makes sense (although I should know not to make sense of things) is that she wasn't 303 because she was low and had insulin on board equivalent to a correction for that 303 that she obviously did not need. I asked her if she washed her hands and she said no. I was too busy with dinner and schoolwork to check that before she corrected at dinner.

The thing is you always have to be on the ball with this thing. It can be so frustrating when you're juggling several balls and you have to ALWAYS remember the diabetes ball and every factor. And as time goes on...it's easier to get a little "lax". Last night's tears and frustration reminded me it's never okay to be complacent. It's never okay to assume something is fine based on past results.

Oh...and thank God for Dexie...because I'm sure without her screaming at me with her double down arrows, I wouldn't have caught her low before it was under 50!

Friday, February 1, 2013

$400

That would be the increase in prescription costs for just TWO of the prescriptions Alex has to have. I literally broke out in hives when told the cost on the phone yesterday. I am still shocked.

We have new insurance as of Jan 1st. We've been on COBRA for several months while my husband transitioned to a new job (via a contracting agency). COBRA was crazy expensive...$1200 each month for the premiums and then whatever out of pocket costs were needed - prescriptions, copays, the pump supplies (and pump). I was eager for my husband to move to his new job permanently and obtain their insurance plan.

So here we are holding our shiny new insurance cards which reduced our premiums to $600 a month pretaxed. I thought we were sitting pretty. NOT! I first felt alarmed when I filled prescriptions for my son and I yesterday morning...prescriptions that cost us $40 per month total for both under the old plan. The bill yesterday was $106. I went home and called the new plan's pharmacy line to ask about it and start mail order service for Alex's main prescriptions: Novolog and One Touch Test Strips.

Old Plan 3 Month Mail Order Cost:
  • Novolog: $80 (Buy 2 months at $40 each, get one month "free" via mail order)
  • OneTouch Strips: $80 (Same Buy 2/Get 1 deal)
Total Cost $160

I've never had a pharmacy plan that didn't have copays. You paid a flat fee. Apparently our new plan doesn't do this. We pay 30% of the cost of the drug. Add insult to injury with a crappy mail order offer Buy 2 months, get 1 month half off the normal 30% cost to you.

New Plan 3 Month Mail Order Cost:
  • Novolog: $253.98
  • OneTouch Strips: $296.35
So yesterday I spent a total of $656 on drugs. I would have spent $200 last month TOTAL. The kicker? It doesn't even apply to my plan deductible.

Explain to me why it should matter where you fucking work to change the cost of life saving drugs for your kid? Oh you work for this company? $20 for you. This company? $80 for you. That company? $656 for you. Oh you're self employed and can't afford insurance? Screw you I guess. Die?

This is what I hate about health insurance and for profit insurance companies and overpriced pharmaceutical drugs from companies that are making money hand over fist. How about not making me beach balls, beach towels, backpacks, water bottles, and pens with your company name on them and reducing the price of the drugs to a normal amount? How about not spending millions on commercials and 4 page magazine inserts on your drugs?

$3401 out of pocket per year for Novolog, Test Strips, and the prescription for Ben and I. And I haven't even covered ketone strips, pump supplies and CGM supplies...yet. I couldn't ask about those yesterday. I was too busy breaking out in hives...which hopefully won't require another prescription.