Friday, March 29, 2013

From Pod to Ping: God Blessed the Broken Road

We started Ella on the Omnipod 3 month after diagnosis in March 2012.
I'd researched several pumps and it was down to either the Animas Ping or the Omnipod.
We chose the Omnipod for several reasons, the biggest being the benefits of not having a tube.
Ella spends pretty much all summer in a bathing suit and I thought trips to the lake and long days spent swimming in the pool would be easier without dealing with a tube.
On a personal note, for some reason I had a real issue with imagining a tube being attached to my daughter.
Domestic Divo and I both wore the pod around for 3 days before we decided to go with it.
He wore it on his arm and beat it up at work, putting it through vigorous physical training exercises and all of the other activities a firefighter goes through during a 24-hour shift.
He did knock it once on a door and had to add a little extra tape to keep it secure, but he was pretty impressed overall.
 I wore it on my back-fat. Insertion was surprisingly painless, but it was super irritating when I was driving because of the spot it was in and I did notice a little tenderness the first day.
 Other than that, I pretty much forgot it was there and it stuck the entire time. So well, in fact, that removing it was the most painful part.
So, we went ahead and slapped one on Ella.
The pod system was so easy to use.
All you need to do a pod change is in one nice, neat little package and it's all automatic.
You fill the pump with insulin and it's pretty much auto-pilot from there. It primes itself, you stick it on, hit go and the needle inserts the cannula.
The menu and navigation is super easy, too. Very user-friendly.
I also really liked the built-in freestyle meter, although I did find that the standard code 16 gave me false low readings and I had to use code 17 for code 16 strips.I searched the web and found others with the same issue, so this wasn't unique to us and I just went with it. It worked.
As summer approached and Ella spent more time in the water, we noticed we had to do more and more to make the pod stick all 3 days: skin-prep, skin-tac, additional tape over the pod, constant taping down of the pod, arm bands, leg bands, sports tape, kinesiology name it, we tried it.
 And while I envied those who simply had to use a swipe of alcohol to make that bad boy stick for 3 days, I still continued to hold fast to our decision that the tubeless pump was worth it.
And then we started to notice a really bad rash under her pod site.
Every new site we rotated to would develop a rash within a few weeks. We tried rotating from toosh to arms to legs but the rashes just wouldn't clear up and eventually by the end of the year, we'd completely run out of usable skin. She had rashes like this on her toosh, arms & legs.

We tried every type of wipe and cream imaginable. Using alcohol wipes, not using alcohol wipes, hibacleanse, bard's barrier wipes, skin-tac, skin-prep, cavilon, tegaderm under the pod, IV3000 under the pod, hydro cortisone, corticosteroids, yada yada. We would pop a new pod on and within 24 hours she would be SCREAMING to take it off saying that it felt like, "10,000 mosquito bites."
So we were doing pod changes every day, and usually at night. And anyone that knows the pod knows about these things called "post pod change highs" -just google that phrase and you will get millions of hits of people complaining about this. For us, any time we did a pod change after 6:00pm, we would have high sugars lasting for HOURS. And I'm talking HIGH. Like 300's that wouldn't come down until after about 2 to 3 corrections. I've seen ketones from post-pod change highs. 
So, as you can imagine, not only were we getting no sleep but I also was so worried about her losing her toes and vision.  
We finally went back to to MDIs and I hauled her into the dermatologist's office because the rash just would not clear up. The dermatologist put her on a mild corticosteroid (aclovate), Epiceram Cream, benadryl at night, zyrtec during the day and an antibiotic because the rash was so bad it was infected which is why it wasn't clearing up.  
And finally, FINALLY, I thought: Why the heck am I doing this? This pump does not work for my daughter. I am SO SICK of all I have to do to make the dumb thing stick for 3 days and then I am SO SICK of seeing a nasty rash underneath it when it does come off and I am SO SICK of POST POD CHANGE HIGHS!!!
I was worried my insurance company wouldn't cover a new pump because usually their policy is one pump every 4 years. I didn't care. I was willing to pay $5,000 dollars out of pocket to get my kiddo on a new pump. Luckily, my insurance company accepted my Endo's Letter of Medical Necessity and the Animas Ping was delivered to my doorstep a few weeks after I started the process.
So, how is life with a tube?
Ella's favorite pump sites are tummie & leg. We reserve tooshie for the Dexcom.
We've tried a variety of pump pouches and currently her favorite is the double spi-belt so she can wear her pump and her Dexcom receiver.
(Livie makes us put a site on her, too. Don't worry - I cut off the cannula and just stick it on her)
We have to change out her site every 2 days or she WILL get a rash. But site changes are a snap and guess what - NO POST SITE CHANGE HIGH! Hollah!
So we do a site change every 2 days and a full change (insulin change + site change) every 4 days.
She says the site changes for the Omnipod hurt WAY MORE than the Animas site changes.
Overall, I actually like the Animas Ping more than the Omnipod.
And, since this was a really long post, I'm going to provide a nice little summary about what I like and dislike about both pumps:
Omnipod Likes:
1. Tubeless (duh)
2. Easy to use
3. Built-in freestyle meter
Omnipod Dislikes:
1. Post pod change highs.
2. Site changes hurt (according to Ella)
3. Getting the darned thing to stick for 3 days
4. Nasty rashes#1
5. The fact that #4 lead to more of #2 and more of #1 = NO SLEEP
6. Inability to disconnect without having to do a pod change
Animas Likes:
1. No post site change high. It's totally seamless
2.  Smaller insulin dosing (0.025 versus omnipod at 0.05)
3. Less wasted insulin
4. Pain-free site changes
5. Ability to disconnect and re-connect. LOVE!
Animas Dislikes:
1. Built-in One Touch Meter. I hate One Touch. Refuse to use it.
2. It requires a lot of button pushing
3. Not as user-friendly...takes a bit more time to learn
So, there you go. The story of how we started out with the pod but ended up falling in love with the ping. It was like we had to go through all we went through with the pod to realize that we were meant to be with the ping.  
I feel a song dedication coming on.
I set out on a narrow way many years ago
Hoping I would find true love with the Omnipod.
But pods fell off a time or two
Wiped my barriers and kept pushing through
I couldn't see how every rash pointed straight to you

Every sleepless night led me to where you are
The pods that broke my heart, they were like Northern stars
Pointing me on my way into your loving arms
This much I know is true
That God blessed the broken road
That led me straight to you
I think about the nights I spent just muddling through
I'd like to have the time I lost and give it back to you
But you just dose and take my hand
No hard feelings, you understand
It's all part of a grander plan that is coming true
Now I'm just bolusing
With my Animas Ping
This much I know is true
That God blessed the broken road
That led me straight to you

Sunday, March 10, 2013

I'm so sorry...

I'm so sorry that my child is an inconvenience to you.
Ella has a chronic disease that requires some special needs.
You can't just sweep it under the rug or pretend it's not there.
As hard as we try to give her the most normal life possible,
we can't make it go away.
But she can do anything and eat everything everyone else can.
It just takes a little extra time & planning.
Livie doesn't have a chronic disease.
Not yet.
She doesn't need insulin.
Not yet.
But she also can't keep up on her own.
If we tax her little 3-year old system and load it full of carbohydrates,
I will see a blood sugar number > 200 staring back at me.
And I don't want to see that.
We are all doing the best we can to feed her meals that will be easy & gentle on whatever remaining beta cells she has. Because, in theory, if we can give her beta cells a break, we may be able to prolong full onset of Type 1 Diabetes. And if I can get just one more year...just ONE MORE YEAR...without the worry of insulin and highs and lows and blood sugar checks and night-time monitoring and ketones, then it is worth eating chicken and green beans for dinner EVERY NIGHT.
I'm not asking you to eat chicken & green beans every night.
All I'm asking is that you be considerate.
And yes, that might mean that you are slightly inconvenienced for one afternoon.

But I think I should be able to ask that, right?
Because "We're Family and "That's What Family Does"
Isn't that what I've been told time and time again?
You see, telling my family to not come because you're not willing to change a darned thing isn't OK.
Not when they are related to you.
They are so amazing, don't you see that?
Don't you want to be a part of their lives?
To do ANYTHING to be a part of their lives?  
There are so many people that ARE willing.
The mom at the preschool who overheard my conversation with the teacher and said she would bring in crystal lite for all of the kids instead of lemonade because she didn't want Livie to feel left out.
The neighbor down the street who knows nothing about Type 1 Diabetes but is willing to learn so my daughter can play at her house.
The Girl Scout Mom who is willing to learn all about Ella's pump so that she doesn't have to be the only one with her Mom around all of the time.
The Grandparent who was up 4 times last night checking Ella's blood sugars just so that she could have a sleep-over at their house.
The school nurse who texted me at 7:30pm Friday night to see how Ella was doing after her crazy combo-bolus for a 70 carbohydrate pizza hot lunch.
I have learned so much over the past year.
I've learned much happiness and much heartache.
I've learned that sometimes blood isn't thicker than water.
I've learned who my true friends are.
I've learned which family members I can count on and which ones I can't.
Which one are you going to be?

Wednesday, March 6, 2013

Take Trois: Livie's OGTT

Last September, Livie had her first Oral Glucose Tolerance Test (OGTT) because she tested positive for autoantibodies.
She was 143 at the 2 hour mark and less than 140 is considered normal.
She missed qualifying for the oral insulin trial by 3 points.
In January we repeated the OGTT and she passed with a beautiful 124 at the 2-hour mark.
 Because she had that darned 143 in September, the oral insulin trial required her to have 2 normal results within 7 weeks of each other.
So, last Sunday we packed up the kids and headed down to Orange County for Livie's OGTT test at CHOC the following day. CHOC is about 2 hours from our house, so the wonderful staff set us up with a stay at the Orange County Ronald McDonald House.
The next time you are at McD's, please drop a few bucks into the Ronald McD house box because those places are wonderful. I cannot tell you how the ability to drive down the night before and stay in a beautiful room with home-made cookies made this experience so much easier. I was so grateful for the opportunity and so thankful for the volunteers and donors who make that place possible.
Since Ella was diagnosed, I decided come hell or high water that we were going to make this life with diabetes fun. And Livie's OGTTs are no exception. So Sunday night we took the kids to see the Pirate Dinner Adventure Show in Buena Park. They loved it. And the chicken wasn't bad, either.
The kids convinced us they needed foam swords and rubber band guns to make the experience truly authentic.

We cut Livie off at 8:00pm and had a heck of a time getting her to go to sleep without her night-time warm almond milkies. But sleep she finally did and woke up angry & nasty. So angry & nasty that she resorted to sucking on all of my floss.
Fast-forward to the OGTT because that's where it really gets fun. Starting BG was 61. Oddly low, right? No wonder the poor kid was sucking on floss. Ella wrote Livie a sweet note on the chalk board:
In case you can't read second-grader, it says:
I hope Livie is all right! I hope she does not cry! I hope she is not hurt. I love you. 
IV insertion was OK because we used the "magic princess paste" otherwise known as EMLA cream, and she sucked down her "yummy fruit punch" faster than a diabetic with a low blood sugar can eat a tub of chubby hubby ice cream. And then she fell into a deep sleep.

 I never learned the art of delaying gratification so I always ask for a drop of blood so I can check how she's doing with my accu-check nano.
She was in the 80's at the hour mark...yeah!
She was in the 120's at the 90 minute mark! sweet! we got this nailed! woot! woot! Bring it, OGTT!
So imagine my surprise when I saw 203 flash on the meter at the 2 hour mark.
"Give me another strip"
 And that familiar lump formed in my throat. And I could feel the tears stinging at my eyes. And I looked at the nurses and I could see the looks on their faces. And I think I said:
"But HOW?"
And then I thought to myself:
"McMomma...pull yourself together"
Because Ella and Livie were both in the room and I was not about to lose it. 
So I said something to the effect of:
" you'll call us when you get the lab results and we'll talk next steps. OK, kids - let's go get some lunch and then we're off to the Discovery Science Center."
And off we went and the kids had a great time.
And I didn't want to talk or think about it until we got the lab results and until I knew what it all meant...I mean, I know it means her pancreas is sputtering, but what does it really MEAN?
Last Friday the phone rang and it was Dr. Daniels, the lead PI of the trial.
It's never good news when it's the doctor and not the research nurse calling.
And they confirmed that my accu-check nano is damn accurate.
Lab results were 214 at the 2-hour mark.
And I finally asked the question:
So what does this mean? Does this mean she's diagnosed?
The answer is no.
Because she's asymptomatic. And because her A1C is still awesome (5.2).
And because until we have a failed OGTT AND something else, there's nothing we can really do but sit and wait.
I've been doing random 2 hour post-prandial checks on her at home and I've seen everything from 93 to 199. She's all over the place, which is probably to be expected when you have a sputtering pancreas.
Sit and wait.
Nobody knows how long.
But I am still open to the possibility of a miracle.
C'mon miracle.
I'll take you in any way, shape or form.
In the meantime, I'm doing surprisingly OK.
I think hearing that she was autoantibody positive was the worst for me.
That phone call was AWFUL.
I don't know what the future holds.
But I know this: whatever it is, we'll be OK.
No, we'll be more than OK.
We'll be awesome.
My awesome kids, kickin' it with Ronnie McD