I know what the FDA will say and I don't care

I've been sick since last weekend. It's mostly a head cold but it tried really hard to get into my lungs, I was able to fight it off and am feeling better today, but that's not the story.

Three nights ago it hit me the worst, I wanted, no I needed to sleep, but Arden's BG was high and being very stubborn so I wasn't able to until about 2:30 am. On a day when I wasn't sick I'd take 2:30 with a smile, but like I said, I wasn't feeling good and so it was tough. But I survived. With about five hours of sleep under my belt, the next day drug on. I was a bit of a wreck if I'm being honest and my cold was doing it's best to advance into my chest. I needed sleep badly now, so I guess you can imagine what happened.

Arden got the cold too, now I knew why her BGs were so stubborn. She stayed home from school and we were sick together. But that night, that second night of my three night tale of woe, it was rough. BGs fought me like a bull and I wasn't able to lay my head down for good until 4:38 am, but I still had to get up at 7:15 the next morning. Now my ass was officially dragging. Every time I tried to sit down yesterday my eyes would close so I stayed busy doing household chores. When the evening came Arden was feeling much better, she didn't get it as badly as I did thankfully and I was hopeful about her BGs and my chances for some overdue rest. 

Before bed last night Arden's BG was a respectable 123 on her CGM, 140 with a finger stick and I was smelling sleep. I stayed up for another two hours to make sure she wasn't going to drop unexpectedly and sometime around 12:30 am I set a temp basal restricting her overnight basal rate because I knew I was going to fall to sleep and stay that way. It makes me nauseous to admit this, but I was happy to trade a waking 190 for seven hours of sleep.

This is what I woke up to.

Now I know what the FDA will say to my next statement and I don't care. We need something to help us. After a while you stop hearing the beeps and feeling the vibrations. Other days you may just be too tired or sick to react. For all that continuous glucose monitoring brings to the daytime, it just doesn't cut it after we lay our heads to rest.

Arden's DexCom receiver, your DexCom receiver should come with a dock, maybe it's an alarm clock too. I should be able to buy a companion clock for my room, for our living room, there should be an app. F&%king alarms and whistles and lights should blare in my ears and shine in my face. Hell I'd wear a bracelet that shocked me when Arden's BGs fell too low. Give me a Rube Goldberg that bashes me in the face, give us something... anything.

Now I am quite sure that the manufacturers of CGMs understand how much an alert system of some kind is necessary and this isn't the first time that I or others have ranted on the subject, but I am tired of hearing that, "the FDA won't allow that". I don't give a damn that each piece of tech that you add to a process makes getting clearance nearly impossible, just someone get the nerve to try. Walk defiantly forward and try to break new ground. Please.

Do it before I die of exhaustion, do it before Arden dies in her sleep. Do it before it decimates another life, another family. Be bold so we can not just live, but live better. Look closely at the next picture. Study the graph and then look at Arden's little face in the shadows. Imagine all of the people living with diabetes that are tired, battling a cold or just would love, absolutely f&%king love, a decent nights rest and then do something to help them.

I know what the FDA will say, they may say that if the signal is carried by my home WiFi for example then my home WiFi would need to be verified so it's not possble. They may say any number of a thousand things, but I don't care. Tell me where to sign my rights away. I promise I won't sue anyone if my router happens to stop working on the night my daughter's BG gets so low that it harms her. I'll take the chance, it's mine to take. Stop restricting great ideas from seeing the light of day because of what might go wrong. Something is better then nothing. Right? 

Seat belts aren't 100% effective, I still wear one. Condoms can't promise we won't get sick or pregnant, but we wear them because it gives us a better chance. This isn't just an issue for young children and their parents. This is also about husbands and wives, boyfriends, college kids, it's an issue that effects every person with diabetes and all we want is a fighting chance. 

Medtronic found a way around the problem with MySentry. Sanofi figure out how to link an app with iBGStar. It can be done.

Here is my unsolicited message to every company that has an idea that they are afriad to move forward with because of government regulations: I know you are scared to approach the FDA with innovation, I get it, I really do understand. But I'm afraid to sleep. I'm afriad that my daughter is going to die. People are scared that their wives, friends, mothers, sons will fall to sleep one night and never wake up. We win, our fear is worse then yours. Help us.

Emojis for texting DexCom data: A New School Plan Update

We are three weeks into the 2012 school year and I am back to report some amazing news. I'm not even sure I believe this, but Arden has yet to visit the school nurse for anything diabetes related. Not once, nada, zero times!

Our New Plan is working even better then I imagined due in large part to how smooth technology has made the transition. Apple's latest upgrade to the iPhone software included the addition of an emoji keyboard and we are making good use of it in our conversations about type I.

We try to keep our interactions as short as possible to minimize the time Arden is distracted from her school work. I estimate that our plan saves Arden from missing between forty-five minutes and an hour each day of class time, but there is always room for improvement. So when I noticed that our texting conversations were taking more time then I thought they should, I wondered why. Arden and I spoke and it turned out that she was struggling to spell some of the words that we use to discuss her DexCom CGM data. Words like, diagonal and horizontal. Other issues were less to do about spelling and more about word count. For example, "189 diagonal up" or "143 straight across". That's when I thought, "if there is an emoji of a heart, dress, shoe and dog pooh there must be arrows".

and there was...

So now we are speaking to each other with even more economy of time and our texting conversations have been trimmed in half, which makes more time for learning.

Emoji can be activated on Apple devices running iOS 6 like so. Settings>General>Keyboard>Keyboards>Add New Keyboard>Emoji. If you talk to your child about their DexCom data via text message this is more then worth your time to set up.

Another nice feature to check out is 'Send Read Receipts'. This one is great not just for diabetes, but for every parent/child texting conversation. Send Read Receipts allows you to see when the person on the other end of your conversation has read your message. It looks like this...

This setting is accessible by taking these steps. Settings>Messages>Send Read Receipts. Changing the setting to on "Allows others to be notified when you have read their messages". No more wondering if the person you are texting with has seen your message. Turning this feature on is a no-brainer for parents, but if you are trying to avoid someone, well, that's a whole other consideration.

My No D Day post

I've been trying to decide if I should do something and I want to ask your opinion. I'm asking because this question has been on my mind a lot and I can't come to a definite decision. Today seemed like the perfect time to bring this up because I belive the question is centric to George's intentions for No D Day. I really need your opinion so please don't be shy.

I registered the URL for my name with the intention of publishing a simple website that identified me as the writer of 'Arden's Day' and 'Life is Short, Laundry is Eternal'. I imagined it would be no more then a landing page that linked to here and to information about the book, but lately I've been wondering if there would be interest and value to the site offering more.

I've been planning on blogging about the process of writing the book here on Arden's Day, but maybe those stories would make interesting content for my author landing page. 

So with that in mind, I have two questions:

• Do you think putting stories of writing the book on another blog is a good idea?
• If I did create another blog would you be interested in also reading some D-Free parenting stories there?

A big thank you to George for his idea to give the community a break from diabetes talk and a chance to speak to each other about other topics. Happy No D Day!

Ninjabetic's 'No D Day'

George Simmons (Ninjabetic) is the originator and host of 'No D Day' and I think he's got himself a wonderful idea! 

"I AM IN NO WAY SUGGESTING YOU SHOULD IGNORE YOUR DIABETES! That is not what we are talking about. The idea is to NOT mention it online so when you do interact with your connections online, you will talk about other stuff."

The first No D Day in 2011 was a nice success with forty-seven blogs being entered, let's see if we can best that number! You can add your blog entry to the list at this link. I hope you enjoy Monday, October 1st... D-Free.

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.