State of the pump address

We are a few days shy of our 3 month-aversary of pumping, and I thought I'd share a few of my thoughts about the whole process.

The beginning was hard. I think that's well documented on my blog. I think our difficulty was spawned by our very unique circumstances... moving from NPH and diluted insulin to a pump. I think I was very unprepared for it, which made it even more difficult.

Once we got her settings figured out (for the time being), it was like some sort of BG nirvana. Being able to temp basal instead of feeding at night has been awesome. We love the freedom. We love that you can't even tell Elise is wearing a pump. We love being able to say yes to cake and pizza at 2:00 in the afternoon.

When we started experiencing the pump-change highs, I wrote this post. Thankfully, my distress call was answered by the awesome DOC and we're pretty close to figuring out the pre-bolus/temp basal combo we need to combat those highs.

We've had our share of alarming pods. Sadly they always seem to happen mere hours after I've just changed her pump. Elise is amazing when it comes to pump changes, but two in the span of 4 hours is more than any little girl can bear. Otherwise we haven't had any bent cannulas or bleeders. Once we did have a pod fall off right after we changed it.

We miss our dex. I think it would really help us out when it comes to tweaking... but Elise still says no, and I'm okay with it. What I don't miss are the buzzing and beeping! One noisy device is enough!

Then came the lows. Wow were they bad. Looking back I'm pretty sure the culprit was a sneaky tummy bug. I say sneaky because there doesn't really appear to be anything wrong with you, except you feel kind of nauseous. Elise kept telling me her tummy hurt, which is something she says when she's low. So I totally missed that she was ill. Bad mom.

I have learned that with pumping, you carry a bigger burden than when on MDI. You have the capability to tweak to your heart's content, but that can be overwhelming. How do you know what the trouble-maker is? Basal? I:C? Correction factor? Something that has nothing to do with settings (illness, growth spurt, stress, etc.)? I have a love/hate relationship with this aspect of pumping.

I've been asked if I wished we had started pumping a long time ago. My answer is no. We waited over three years after Elise was dx'd to start pumping, and it was the perfect time for us. I was able to learn so much from the DOC, and I felt like we chose the right pump for us.

Once upon a time, Omnipod was not even on our radar as a pump choice. We were all set to go with another company, when I started hearing some unpleasant things about their pump. So we contacted Omnipod, and as I met with the rep and CDE, I was blown away at how we were treated as customers. They truly care for Elise. I cannot say enough about how well we have been treated.


And that's our pumping story so far. We love it. Elise loves it. If you charted all of our ups and downs it would look a dexcom graph on a bad day, but we wouldn't change it for anything... Right Elise?

Underwhelmed

Yesterday was report card day. Our first one since we started pumping. I was bracing myself for a huge jump since we still are having trouble nailing down Elise's settings. The girl has no patterns whatsoever.

We had been seeing a lot of highs after working our way back from that weirdness of lows a few weeks ago. Really I had no idea what to expect, so I did the old "hope for the best and expect the worst." I'm a realist like that.

6.9

Huh. Which pretty much was my response when Dr. T announced the number. We agreed that the 9+ days of wack-a-doo lows probably had a lot to do with it, but she stressed that she thought we were doing a good job.

As Randy from American Idol would say, "I'm just not feelin' ya dawg."

The whole appointment left me decidedly underwhelmed. And I think one of the things bugging me (and I told the doc this), is that I feel ineffectual and inadequate.

You see, the beauty of the pump is the ability to fine-tune and micro-manage numbers.

And the horribleness of the pump is the exact same thing.

Because sometimes all that control is so freaking overwhelming, it makes me want to cry. I constantly ask myself, "am I doing enough?", because I know I could be doing more than I am. I feel like I've become a bit complacent... but that doesn't exactly describe it.

It's sort of like having a huge clean-up job to do and not knowing where to start. And when you try to start cleaning up, more piles of dirt keep popping up. And all you want to do is just lie down and go to sleep, hoping that when you wake up, the mess will be gone.

Dr. T did say something that struck me though. Sometimes you have to sit still and do nothing. That, I think I've got down to a science.

What I have to learn is, to be okay with it.

***I think I need to be more clear. Any other day, I would happy with 6.9. In fact, I went back and looked at our last A1c and it was exactly the same. It's just that I don't think that number reflects my effort (which has been both a lot and not enough at the same time). I think what I'm trying to say is I should be happy about that number, but I feel numb about it more than anything.

Have D, will travel

The other day I was reading this thoroughly funny and informative post about travelling with D and a baby by Kerri, when it dawned on me that I had never posted about our experience when we went to Portugal last summer. I think mostly because I blocked it out as a survival mechanism if I ever hope to get on a plane again.

For our trip (a 17 day excursion), we brought the following; a suitcase for Fred and I, a suitcase for the kids, a suitcase with a necessary baby paraphernalia, a suitcase full of miscellany, a car seat for Mattias, a hospital grade breast-pump (because of feeding issues with Mattias), a pack-and-play, a stroller, a bag full of extra supplies, a bag full of food, Elise's carry-on diabetes bag that was large enough to put a 12-can cooler in, a diaper bag and a boppy. We left the partridge in a pear tree at home.

The trip there wasn't all that bad. We left Dallas at 5:00 pm and the kids slept most of the flight... Mattias sacked-out on the boppy on my lap (I sooooooo love those contraptions!) and nursed whenever it pleased him.

Unfortunately, we had to transfer in Madrid which meant lugging the kids and all our carry-ons through customs. Our family gets quite a few raised eyebrows since we all travel on different passports (Portuguese, Canadian, and American). We often get asked, "sooooo, you are all one family?" Bahahahaha!

The trip home was quite a different story. In Lisbon, we ran into difficulties at check-in. The girl said we had way too many bags and she was going to charge us. I was prepared to throw a hissy-fit (I mean, we had the same amount of bags that we came with), but Fred calmed me down and we paid the 50 euros.

Then, at security (at this point we are in danger of missing our flight due to the bag argument and a very long security line), the guy tells us we cannot take the syringes through. Yousaidwhatnow? I was all primed and ready for hissy-fit #2 (never mind that he couldn't even understand me) when Fred took charge. He finally was told he could get a letter from somewhere in the airport giving him permission to carry the syringes through security, leaving me to wrangle two kids and our fifty thousand carry-on bags.

We ended up running for our flight and was allowed to board first. I think they felt sorry for us. At one point the gate agent remarked that we seemed to have a lot of carry-ons, to which I replied, "yeah... and?" Travelling makes me bitchy.

(keep in mind that two of our bags were considered medical and didn't count towards our total, and one was a glorified pillow)

Once in Madrid, it was snack time. When we went to Portugal, Elise was still on NPH, so we had to be mindful of the clock all the time. So once we got off the plane, we sat in the gate area so Elise could eat. By the time she was done, we realized that it was going to be tight making our connection to Dallas. We still had to go through customs, and the gate was in a completely different terminal that we had to take a train to get to.

So once again, we ran. By the time we got to our gate, they were announcing the final boarding call. Then, I heard someone absolutely murder my name on the intercom. To this day, I don't know how I even knew they were calling me. I finally found out from the gate agent that I had to go to a gate about 200 meters away for a secondary screening. I asked if just I could go, but was told I had to take my whole family (and bags) with me. Commence head exploding... NOW!

Once there, they asked me insane questions about packing my own bags (no, a dog did it), did someone give me something to take on the plane (just some nervous guy who gave me a ticking box), and other nonsense that would have been funny if we weren't about to miss our plane. They decided I wasn't dangerous (because Canadians usually are), and we *just* made our flight in time.

I carried Mattias onto the plane (Elise and Fred were still at the gate checking the stroller), and tried to find my seat. When I got there, it was occupied by some Spanish dude that did not understand the words "get your tapas-eating ass outta my chair!"

Finally, he moved, and as I'm trying to get myself, Mattias, the boppy and the three bags I was carrying situated, Mattias started kicking his feet, getting them caught in the waistband of my yoga pants, which yanked them down.

Yup, I gave my seatmate his own little peep-show. He had the decency to look away while I pulled my pants back up.

It. Was. Awesome.

To make a very long post not quite as long as it could be, we spent 18 hours travelling that day. We also spent an extra hour at the Dallas airport because Fred had lost his cell phone during the trip and we didn't have a way to call our ride to pick us up (I bummed a cell phone off my seatmate... hey, he OWED me).

And one last little post-script to this slightly-more-hilarious-now-that-it's-a-distant-memory, we had moved while we were away in Portugal. Rather, our realtor supervised the move for us. So we left our old house, and came back to a new one. With all our possessions in boxes, the gas turned off, and the house at a balmy 92 degrees inside.

It was travel-craziness at it's best. I think Elise ran in the 400s almost the whole plane-ride home. But I would do it again in a heartbeat. Next time I'll leave the yoga pants at home.

Once upon a time... The End

Well... I'm a little embarrassed. After almost 3 1/2 years of dealing with this disease, you'd think I would know better by now.

I need to stop paying attention to the man behind the curtain.

Diabetes is always there. Pushing buttons and pulling levers. Making a lot of noise that scares the poop outta me, but in the end really amounts to nothing.

Those crazy lows we were having? They have exited stage left. Well, mostly. We're still not back to Elise's normal insulin consumption. It's a little more than half, and being tweaked daily (not abiding by the 3 day rule this time).

I appreciate everybody that took the time to comment or email me (and if you did email me, I'm sorry I haven't responded... life is ca-razy right now). I looked long and hard at Elise's numbers, but just couldn't agree that it was her basals. Her lows would ALWAYS come 1 1/2 to 2 1/2 hours after eating. When I manually cut her bolus in half, she would be okay. If she didn't eat, she stayed level.

Of course, almost as soon as I changed her settings, she swung back the other way.

What ticks me off is that I KNOW that this (weird and wacky things) happens with D. And I KNOW it will go back to "normal" at some point. So WHY do I always wring my hands and freak out the second D starts blowing smoke? And drag all of you through my crazy by posting about it?

I guess it's therapeutic for me to spew crazy on my blog. That way, I don't lie awake at night obsessing about it over and over. And, I always appreciate the support and insight I get when you guys leave comments.

And while I'm still going to run to my blog and regale all of you with the latest ways diabetes is making me coo-coo bananas, my new mantra is going to be "pay no attention to the D behind the curtain". And I'm counting on you to yell it at me the next time diabetes throws me a curve ball.

Dazed and confused

That's how I feel. Dazed and confused and wondering just what the hell is going on. We are still battling terrible lows post-meal.

On Saturday, Elise came back from her weekly breakfast with Fred complaining that she didn't feel well. She was 45. We gave her 18g and she only came up to 80. And 30 minutes later she was 55 and feeling awful. It took 2 cups (as in 500 mL) of orange juice to get her to 100 and finally feeling better. She ate a 25g lunch for which she received no insulin. Two hours later she was 132.

It was scary. I've gotten to the point where I am afraid to bolus her. I've adjusted her I:C ratio twice, and cut the suggested bolus in half. We still end up in the 70s.

To give you an idea how much her insulin needs have changed, here's what they used to be:
12a to 9:30 - 1:15
9:30 to 12a - 1:30

According to my math, this is what her new I:C ratios should be:
12a to 9:30 - 1:40
9:30 to 12a - 1:90

How can that be?

I don't know what the what is going on here. She doesn't appear to be getting sick. If she doesn't eat, she stays pretty stable, so I'm pretty sure her basals are okay. I feel out of my league here. Over my head.

And worst of all, I feel like I'm failing Elise. These past 5 days have really taken their toll on her. I need to figure it out. These ratios are far below what they were when she was on MDI.

School is looming on Tuesday, and unless I can figure this out, there is no way I'm letting her out of my sight.

Dexcom FAIL

We finally decided to slap a sensor back on Elise because of some very scary daytime lows she's been having. About an hour after she eats, her BG is in the 40s. Every stinking time I bolus her, it's the same thing.

The weird part is at night, it's like the insulin won't touch her. I recently upped her basal because by around 1 am, she would be in the 200s when going to bed with a BG of 130. Now she's in the 300s by 1 am. And I am so afraid to give a full correction because of what happens during the day. But if we don't do a full correction, she wakes up high.

We used to have the opposite problem at night... she was very sensitive to insulin. But I guess the only thing that is constant with D is change, right?

Anyway, back to the lows and the dex. Yesterday, I started giving her HALF of the suggested bolus, and she would be in the 90s after 1 hour. So I decided I had had enough, and on went the dex.

The funny thing is, I had almost forgotten how to do it. When I finally got it on, I noticed it was bleeding a bit. But I didn't have the heart to pull it off and do it again, since yesterday was also pod change day, and Elise had a friend over and wanted to go back to playing. I figured it would stop bleeding and hopefully not affect the numbers.

Everything seemed fine, except dex was a little slow on picking up the drops, but I blame this on the fact that we probably need a new transmitter.

Then came bath time and I noticed she had a LOT of blood on the adhesive. So after wearing it for only 5 hours, I pulled it off and saw THIS (squeamish alert):

Poor girl, she never cried or complained that it hurt. And it kept bleeding after I took it off. It wasn't on long enough to get any usable data, and I'm not sure if we're going to try again.

These lows are just scaring me so much. The only time I've seen this happen is when she's getting sick (or after she's been sick), but it's been going on for about 4 days and so far seems fine.

Diabetes, as usual, is causing my brain to hurt. Blergh.

Why I don't hate NPH

Just want to remind all of you reading this that I am not a doctor, this is not medical advice. Merely how we manage the day-to-day of Elise diabetes. It works for us. I'm not suggesting it will work for you. Talk to your doctor about making any changes.

***Also, this post was written pre-pump... I was just too lazy to go in and make changes***

Some time ago, I was reading a post on Nicole's blog, and she mentioned how she had learned about how many people hate the insulin NPH at the FFL conference. She mentioned being shocked.

You know what? I'm not.

Because I have had people (not doctors, not CDE's, but people who think they know best) tell me that NPH is "a horrible, awful insulin", and that "nobody in their right mind should have their child on it".

If you don't know, NPH (or Humilin) is an intermediate acting insulin. It's said to have a peak effect 4-12 hours after injection, and a duration of action of 18-26 hours. That can differ from person to person and even from one day to the next in the same person. No wonder most people refer to it as, "Not Particularly Helpful" (get it? NPH? HA!)

Elise gets her dose in the morning combined in the same syringe with her humalog. We see it start to work about 2 hours after injection, a peak at about 4 hours, a second peak around hour 6 or 7, then it is gone by about 5:00 pm (as always, your diabetes may vary).


The reason we were started on NPH at diagnosis is because Elise was so tiny, and so early on in the development of the disease, that she was on diluted insulin (and still is for her fast-acting). The only background insulin you could dilute was NPH. To give you an idea, Elise's (background) insulin needs at dx was 1 unit of diluted NPH (or .20 of a unit), given once in the morning. That is an itty-bitty amount, people.

These days she gets 3.5 units in the AM and 2 units at night. And we don't dilute anymore. So why do we still use it? And why don't I hate it like everyone else?

For one, it means less shots for Elise. She only gets 3 per day, and gets to eat 3 uncovered snacks (and no lunch shot since it peaks at noon). Actually, with the way we have her dosage set up, she can pretty much graze (within reason) for most of the afternoon and not have any adverse affect on her BG.


It also means that at school, she can eat her snack and we don't have to worry about someone else giving her a shot, or me needing to go up to school to cover her snack. She just eats with the rest of the kids.

Having used this insulin for over 3 years, I have a pretty good understanding on how it works (in Elise's body) and how to tweak it. When we're not dealing with illness, stress, growth spurts etc., I often see a pretty straight line on her CGM, and we don't get those crazy peaks and valleys. This past week, her BG was between 85 - 150 for three or four days. It was BG nirvana!

And last, Elise's past few A1Cs have been; 6.7, 7.0, 7.0, 7.0, and 6.6. Because of the CGM, we know it's not due to lows. For whatever reason, we get awesome control using NPH and diluted Humalog.

Having said all of that, we would not still be on NPH if it were not for the CGM, which has allowed me to study and gain a better idea of just how the insulin works in Elise's body. NPH is a very unforgiving insulin in that you need to be on the ball and watching the clock for an approximate peak-time. With the CGM, I can see the peak starting to happen and act accordingly.


These days, I cannot imagine managing NPH without the CGM. To me, it would be like flying blind. Plus, I was lucky to be able to become an "expert" at NPH without any other distractions (read: other kids) running around at the time.

We are not going to be using NPH much longer; a move to the pump is imminent. We've done everything we need to do. Elise has given her okay. The delay is due to not knowing which pump to go with. We thought we knew, but some recent issues have changed our minds (that's a different post for a different day).

I just wanted to put it out there that NPH is not all bad. It's not the "evil" insulin like I've been told. It's just happens to be what works for us.

What to expect when you're pumping

If you are a D-Mom or D-Dad, that means at some point in your life you might have picked up the "Pregnancy Bible"; What to expect when you're Expecting. This post is my pumping version... minus the bible part.


You WILL feel like you have been diagnosed all over again.
This is because, more often than not, you will find yourself staring at the number on the meter, fighting the urge to scream the full-length version of WTF. Then you will have no idea what you're supposed to do next, and you will run over to the pile of hand-outs that the CDE gave you at pump class, to try and find the answer.

Pumping is sooooo different than MDI
I'm not sure that anyone told us this. Maybe it's because switching from NPH to a pump is harder than switching from an insulin like Lantus. Anyway, we have found that EVERYTHING has changed for Elise.

She is more sensitive to carbs. Her correction factor went from 500 to 250 (WTF??? in HALF?). She requires more insulin to cover her meals. I am amazed at how much more insulin she needs now that's she's pumping.


You will cry. This is normal.
I think I have cried more these past few months than I have in the last 2 1/2 years. Starting on a pump is a stressful, stressful business people. I highly suggest having bags of tootsie rolls (or -your go-to stress food of choice) stock-piled. You're gonna need them.

And for the love of all that is holy, don't start pumping right before a big event that is going to need all your attention; like having a baby. Or moving. Or going on a trip. I did all of these things over the last year and cannot imagine having to do it while figuring out pumping at the same time.


There will be times you will want to rip the pump from your child's body
I have lost count of the number of times I have uttered the phrase, "that's it. I'm done. Let's break out the NPH and drop-kick this pump out the door." Learning to let go of the "known" is tough. I like comfortable. Hell, I still have a pair of yoga pants from when I was 18 because they are so soft and cozy. If possible, I want to be buried in them.

You just have to ride out the storm knowing that there is a promise of calmer seas ahead.

3 days will pass by in a flash
What is the significance of 3 days? Why, it's when you're supposed to change out the pump site. I swear, if you need time to pass by quickly, just put your child on a pump. Because there are days when I hear that, "beep beep, beep beep, beep beep" and I start cursing because, hell... didn't I JUST do a freaking pump change 5 MINUTES AGO??? WHERE ARE MY TOOTSIE ROLLS?

You will mourn the loss of a contraption-free body
I let go of this a long time ago when we started on the dexcom. But seeing one more thing on Elise's tiny frame has made me sad. Especially when that one more thing leaves a pretty big mark.


You might wonder why everyone thinks pumping is so awesome
I won't lie, I've been asking myself what kind of crack the rest of you guys are smoking to like this pumping thing so much. And where can I get some? But then there are moments when the clouds part, the sun shines through and all is right in the world... like when we get two numbers starting with a 1 in a row. And I think, "yeeeeeahhhh! We got this!" Until the next 400+ pops up.


You need to stay the course
As much as I've been hating pumping, I know that in the long run, this will be good for Elise. One day, when the stars align properly, we will have figured out her settings and we'll feel good about it.

The most important thing is that Elise loves it. She seems to be happier than she has been in a long time. And that is worth all the stress, crying and WTF moments a thousand times over.

***edited to add a little caveat: I started writing this about a month ago. I feel much better about pumping these days but decided to leave this post as is because I hope it will help people see that there is a proccess when it comes to learning to pump. I'll leave you with just two words: pumping rules!

How you can tell you are the parent of a type 1 diabetic

-You ask your child "are you high?" on a daily basis (yeah... an oldie, but a goodie).

-You just smile when a friend tells you they are so tired because their daughter woke them up once the night before. You're smiling because you're envisioning yourself calling them at midnight, 2 am, and 5 am (or, your nightly BG check times) every night for the next decade or so.

-You have ever tested a BG/fed sugar/given a shot to one child while nursing your other child.

-You carry smarties in your sock.

-You find test strips on the road in front of your house and it makes you smile because it's like you have your own personal calling card.

-You know the carb factor of an apple. And peanut butter. And pretty much any brand of vanilla ice cream. Heck, you're such a rock star, you know the carb factor of lemon meringue pie.

-Mac n cheese scares you.

-You're proud of yourself for being able to cut and weigh 10g of banana on the scale on your first try.

-The first thing you look at when thinking of buying a new food product is how many carbs are in it.

-You cannot wait until someone gives you a dirty look for giving your child a shot in public. Because there are 3 1/2 years of sleepless nights, stress, anxiety, and tears all waiting to be let loose on some poor soul who happens to make the mistake of judging you.

-You've checked your own BG during a gestational diabetes test.

-You find hidden packages of smarties throughout your house, like your very own easter egg hunt.

-You've given your child a shot at a red light.

-At a red light, you are able to pull off your child's shoe and sock, clean their toe, do a BG check and get their sock and shoe back on before the light turns green.

-When your child runs to you crying and bleeding, instead of comforting them, you grab their meter so you can test their BG.

-You've ever wanted to kick an internal organ's ass.

-The sentence, "in your endo" makes you want to laugh. Because you are 12 like that.

Things diabetes taught me this month: December edition

-As most of you know, I use carb factors. They have saved my sanity. When I come across a food that Elise has never had before, I try to guess the carb factor without looking at the nutritional information. Who says I don't know how to have fun?

Anyway, our new food this month was the candy cane. I guessed .89. To my surprise, the carb factor of a candy cane is 1. The only other thing I know with that high of a carb factor is sugar!

-Those tiny candy canes come in at 5g each. Elise enjoyed a few of those for her lows this month.

-Did you know that dexcom sensors expire? And they're not good for long, either. I noticed the expiration on Elise's usually come about three months after we get them.

-I can live without a CGM. Actually, it's been really nice (at times) not dealing with it. Sure it would be great to have on pod change day, but we've started noticing trends on our own. Elise has been begging me to put it back on her (weird, eh?), but so far I keep finding excuses to keep it off. Seeing how I have a bunch of sensors set to expire, I guess I should probably honour her wishes.

-It should be against the law that every family member goes down for the count with the crud at the same time. Especially because it means both adults are sick, leaving the dog in charge. D really sucks ass at times like these.

-I can always count on my peeps in the DOC for help. Yeah, I already knew this, but I keep learning just how awesome you guys are when a girl is tearing her hair out because of this obnoxious disease. Our last two pod changes have been much better, although we still need some tweaking. We're getting there, though! Thanks to everyone who left a comment on that post.