Please Test

I need this post to accomplish two distinct and important goals. The first one will be simple. I want to thank my wife Kelly and my daughter Arden for both being so amazing. You'll see why in just a moment...

Second and maybe more importantly, I want to take this opportunity to remind everyone that while CGM technology is fantastic, it isn't foolproof. Because of that sometimes ignorable fact, we always have to test. Normally when we speak about this topic it's in response to the notion that you shouldn't bolus based on a CGM number. While bolusing without testing is something that we should never do, most of us probably have... but we shouldn't becasue CGM technology is designed to be used in addition to testing, not in place of.

Tonight while I was with my son Cole at his baseball practice (yes I know it's January) Arden's CGM alarmed and reported, "101 arrow straight down". Kelly, being the D-mom rock star that she is, tested.

Please test because sometimes, not often, but sometimes, 101 is actually 36. The DexCom CGM technology is so wonderful that it's easy to forget that it isn't perfect. I've been as guilty as the next person of leaning on it too much when I know that it isn't always spot on. It's difficult not to, especially after the sensor has been on for days and consistently reporting numbers that are so close to our tests. Next time that I'm inclined to think that way, I'm going to remember something that Arden and Kelly told me when I got home and I hope that you will too.

Kelly later said that she tested Arden because Arden said that her eyes "felt funny". Arden told me the next morning that it felt like she had been looking, too long, into a computer screen and then suddenly turned away. "My eyes were getting dark" she told me, with no inclination for how her words were breaking my heart. 

I gave her the bolus a few hours before at dinner that caused this low... and her eyes got dark.

Most moments with type I diabetes are uneventful. Our vigilance gives us the sense that we have the disease under control, but that's a foolish notion. It's only under our control until it decides that it wants to run away. When diabetes decides to run you can't stop it. Your best hope is to chase after and keep it in sight until it gets tired of running. Then you can stand next to it again, pretending that you are partners.

We're vigilant because we can't predict when diabetes will take off running, that's why we test. You aren't taking the test, it isn't you that's being judged. It's a test of diabetes, an indicator for whether diabetes is going to stand next to you and play nice or run away.

Please test.

Ask Me Anything Answer: Kelly

I received this question from an anonymous poster on my 'Ask Me Anything' discussion board.

From posts and talks, it seems you are the only caregiver of Arden's diabetes. Understanding you're a stay at home dad, probably works easier that way, but I was curious how your wife is involved.

This is a great question and I am very glad that it was asked!

It was clear almost from day one that Arden's diabetes was a full-time job and that the 24/7 nature of the disease required a full day view of the events that not only transpired today but for the days prior. Those truths make handing Arden's care back and forth problematic. With that knowledge Kelly and I decided that one of us should be the primary and because I am a stay-at-home dad I was the obvious choice. If we were making the decision based on who was prettier, smarter or more detail oriented, Kelly would have gotten the job!

Arden's Day is written from my perspective and I don't share my stories in other's voices so it may seem like Kelly isn't as involved as she is. This is an unfortunate side-effect of blogging and why I was so glad to receive this question. I can be wordy so in an effort to keep my post to a readable length I avoid writing a lot of dialogue. Whether or not my writing is in any way special is up to the person reading it but I think my strength is bringing a reader into how I feel and allowing them to leave the text with the emotions that I experienced. I find that when a post has too much, 'and then he said this and I said that' things have a tendency to get muddled. In an effort to stay as short and sweet as my gabby mouth allows, I simplify some situations and combine characters. If Kelly and I confer for example, I may just relate that conversation to you as an inner monologue.

All that behind the curtain stuff aside... here are the ways that we manage things at our house.

During an average day I handle type I autonomously. I wake up every morning before Arden and check her BG and make adjustments if necessary so that she can begin her day with an in-range number. I come back into her room about 30 minutes before she eats breakfast and we pre bolus for the meal. During the school year Arden and I converse via text and phone throughout the day and make decisions together about her insulin, food and other type I needs. I am here when she arrives home and we take care of meals, bedtime and the rest. I wake up or often stay awake throughout the night to help keep her BG from causing issues as she sleeps... then we do it again. I take care of OmniPod changes, DexCom insertions, I order and maintain the supplies and go to the doctor's appointments. We handle things this way to make the best use of the knowledge base that continual exposure to type I care brings to me, not because Kelly can't or doesn't know how to handle them on her own. Kelly has a rather high pressure, long hour type of profession that uses a great deal of her time. We like to keep the time that she has left available, as best that we can, for her to enjoy our family. 

When all of this gets the best of me, and it frequently does, I reach for Kelly and she takes over until I can be ready again. Kelly will take an overnight for me a few times a month and there are days on the weekends when she manages Arden all day and night without my involvement to give me a break and keep her up-to-date with how Arden's type I management is morphing. It's difficult to pass care because there are so many little tricks that I use and adjustments that I make on the fly, these small but important decisions are bred from countless hours of managing diabetes and can't be easily passed on to another CareGiver. For example, I gave Arden more insulin this morning then I usually would have based on three factors; a BG that we got yesterday at the same time of day, the fact that she is on the first day of a new pod and a spike that I saw on her CGM overnight. You just can't teach that stuff and it takes a lot of time to absorb, if Kelly (or anyone else) were to have began the day caring for Arden they wouldn't have the benefit of those three experiences and would have no way to know that a change was required. In kind, I didn't know until I took the last steps of the morning and put it all together in my head. It really is true that diabetes management is more of an art then a science! 

I know from speaking to some of you that the method I described is very similar to how many two parent homes handle type I management. I think that each parent needs to have a working understanding of the way type I is handled because everyone needs a break once and a while and care shouldn't have to suffer during the moments of respite. I feel extremely lucky to have Kelly waiting to take the meter from me when I pass out, it's an ugly baton pass that very frequently begins with me slumping over on the sofa.

I'm going to borrow a passage from my own book and share it here. The book is only in it's first revision so this bit may or may not make it past editing but it will tell you all you need to know about Kelly and what she means to me and our family. I wrote this passage in the chapter that tells the story of Arden's diagnosis and subsequent hospital stay...

On the nights that are the hardest I think about Kelly in that crappy vinyl chair, sitting with sand in her ass, legs asleep and having to pee for the last twelve hours and I keep going in honor of what a great mom she is to our kids. I try my hardest to respect the fact that if our roles were reversed and Kelly was the one staying at home that she would provide daily that same level of care, love and concern that she did that day. I do what I do because it keeps Arden healthy, I do it because I love her, but I do it the way that I do it with Kelly’s example as my guide.

I just might have a problem that you'd understand

Arden's blood sugar fluctuates, that's no surprise to me or to you. It goes up and down, somedays more then others. There are times when it stays steady and the line on her DexCom CGM seems to be perfectly still.

My very soul feels attached to that line and I ride it like a roller coaster. Most days I don't feel the stress or hold myself personally responsible for where that line goes. I just do my best to keep it steady. The amount of care and effort that goes into managing that line is immense. It starts with grocery shopping as I try to plan meals that are healthy and have a low impact on Arden's BGs. It's tough with younger children because I'm also trying to find foods that they enjoy while gently directing them to healthy choices. Then there is pre-bolusing, the act of administering insulin before a meal to aviod spikes in that line, administering the insulin, watching that she eats and on and on. It must sound strange to an diabetes outsider but all of that is incredibly stressful and it happens every few hours.

The stress stems of course from the knowledge that high BGs are dangerous to Arden's longevity and the lows are no better. The real source of my terror is that I know Arden isn't feeling her best when her BGs aren't in range and steady. Every meal, every snack is an oppurtunity for her to live an hour or three in a way that any parent wouldn't want for their children. I feel all of those minutes in my heart in a way that would take a thousand words to describe.

When she seems to space out on the sofa as her insulin struggles to bring her back to normal, I feel like a die a little inside. When she falls to sleep at night as her BG drifts down, I watch hoping that it will stop where I need it to. When it doesn't and she gets too low, the moments strikes at my soul. If she stays too high and I have to give her more insulin, that's just another night that I don't sleep. In all, almost every moment of the day is lived in uncertainty.

Last night I just couldn't be strong anymore. I tried but when Kelly and I went to bed, I layed there taking deep breaths, trying in vain to expel my stress but I couldn't so I pulled Kelly close to me and when her skin touched mine I began to cry.

In an instant the tears were crashing down my face and I could hear them splashing on the pillow, I thought to myself, "I haven't cried like this about diabetes since Arden was diagnosed". When it finally stopped, I had an overwhelming urge to speak outloud the only thought that remained in my head but it felt stupid to say, childish even. I did finally say the words to Kelly even though they felt like a complete waste of breath...

"I don't want her to have this anymore".

Kelly and I spoke about stuff too private for even my transparent blogger heart to share and then I pulled myself back together, snuck into Arden's room and took a look at her CGM - I was strangely refreshed.

This morning while I was making Arden breakfast she started to sing out of the clear blue. I swear to you that I'm not making this up or embelishing in any way.

Arden started to sing 'Lean on Me'...

I'm crying now just thinking about it. I know that we are going to be okay and I wanted to share this with you so that you might consider a good cry next time there's "a load you need to bear that you can't carry".

She sang 'Lean on Me' having no idea of what transpired the evening before. No kidding, huh? Pretty great...

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What lies beyond tired

Just past tired and around the bend from exhausted lies a magical place called delirious and I am writing to you from there.

Monday night began my journey to this place where my head floats, my thoughts make less sense and no one is on time for school. Arden played in a softball game Monday evening, then she ate, we bolused and around midnight her BG unexpectedly fell. It wasn’t one of those crazy double arrow down (for you CGM users) and still a long time to go until the bolus is gone declines. It was the slow fall, so slow that the CGM can’t even report an arrow, you just watch the number slowly drop. I was able to stop the fall at 60 by turning off her basal but with no food it was going to hang there until around 3:30 am. So I sat up in bed playing games on my iPad, listening to music and trying not to wake Kelly. Arden BG began to climb and I went to sleep at about 3:15.

Tuesday night added insult to that injury as Arden began to rise unexpectedly after she went to bed and I didn’t have the courage to bolus as much as I should have. I ended up chipping at the BG over the next few hours trying to get her down. That was a mistake because at 1 am I finally had to give a large bolus and then I didn’t want to sleep until that insulin had run it’s course - I looked at the clock as my eyes finally closed, it was 4:40 am.

Last night hunger was my fickle foe. Arden was hungry at bedtime and I let her eat. We had just changed her CGM sensor so I didn’t have an arrow to tell me what was happening. She had a small snack and I waited 15 minutes to bolus for the food incase she was dropping (hunger for her at that time of night usually indicates an upcoming fall). As my bad luck would have it there was no drop... she was just hungry and so I had to bolus late at night again but I did get to bed at a respectable 2:30 am, a bedtime that wouldn’t have been bad if the prior two nights weren’t so tough.

All of this has left me very tired. I have what I think is called brain fog, my neck is also stiff and my stomach a bit out of sorts - I haven’t had the energy to do half of the things that I had planned on doing this week and I wasn’t able to get Arden to school on time the other day. Why am I telling you this, am I complaining or looking for a virtual pat on the back? No, I’m telling you because of a tweet that I read the other morning.

Every night I put Arden to bed I think the same thing. It’s not a particularly uplifting thought and it isn’t a conscious one but it’s come into my mind every night since she was diagnosed. I tuck her in, sometimes we read a book and always before I leave the room I give her one last kiss good night - then I think, “please don’t die”.

I was exhausted the other morning until I read that tweet and then I pulled myself right together. “This is just a few days of being tired”, I thought. It’s not the end of my world and it certainly isn’t equivalent to my daughter not being here anymore. I want to say that I’m in no way indicating that the parents of typeI children that have passed away in their sleep did anything neglectful. There are nights when everything looks perfect and the situation could and has changed the moment I’ve gone to sleep. I’m not in control of any of this and I know it but I am going to be as vigilante as my body will allow me. When I can’t do it anymore I always ask my wife Kelly if she can take a night and she jumps right in even though she works such long and stressful hours at her job.

Anyway, I imagine that I can’t be the only one who has this thought at bed time and I wanted you to know that you’re not alone. That I am standing in a hallway just like you. Wondering if I’ve handle the day properly, if the insulin decisions that I made are going to come back to bite me at 2 am. The truth is we are all standing in that hall, at a bed side or sitting on the sofa pretending to watch TV while we go over the day in our minds. I just thought that if you knew how exhausted I was right now and that I wasn’t giving in to it, well... I thought that maybe you could feed off of that if you were having a similar couple of days.

**

The following are archived comments from this post. You can post new comments below.

Stacey D.

I hate with all my being when I hear those stories.  It's just a reminder that as much as we do right, it's sometimes something we can't control.  And I'll be blunt ... that is scary sh*t.  Just last night the Dexcom woke me close to midnight with a low alarm.  BG check confirmed I was 52.  I drank my juice box pretty quickly and laid there as I was not feeling well.  I wanted to wait until the BG was on it's way up to go back to sleep because of how I felt but my sleepiness took over.  I woke up this morning very thankful that my BG indeed do just that.  Went up.  I think we all have that fear.  It would be hard not to.  Arden is very lucky to have parents like you + Kelly and so many other D parents out there.

Thursday, May 5, 2011 - 04:48 PM

Penny

Thank you for this. I appreciate the same-ness of which you speak, cause I find myself in the hall, with iPad in lap, fighting to stay awake through a low that won't come up or a high that won't budge. And I think of other parents, in their hallways, kneeling beside beds, muttering 'please don't die' under their breath and it gives me a sense that others understand and that I am not alone. So, thank you for that. And know that you, also, are not alone.

Thursday, May 5, 2011 - 07:08 PM

Scott

Thank you both!

Thursday, May 5, 2011 - 07:39 PM

Lorraine

Beyond tired. And the pain of it all is compounded in the middle of the night. The light of day always helps me, but even so, sleep deprivation takes its toll.

As Penny said, I feel your sameness too. It has improved significantly having DexCom though. I don't find myself staying awake quite as much as just waking up. Maybe I'm kidding myself??

Saturday, May 7, 2011 - 09:29 AM

Ali

Yes, I know just how you feel.  My son's bg has been so up and down through the night for so long now that I live in a constant state of tiredness.  We are currently getting up now at 4am to give a shot of novorapid as his bloods tend to go up during the early hours.  Thankfully we will be getting the Omnipod next week so I'm hoping to tweak background insulin to avoid the fluctuations.

If my kids aren't awake by 8am I often panic that something deadful has happened.   So I suppose this makes me more aggressive with their management.

My heart goes out to that family.  They must have so many questions which I suspect they will never get answers too.

Saturday, May 7, 2011 - 10:52 AM