28 April 2013

What If?

We had a scary, scary low tonight. Third of the day - no, make that the fourth. It's derailed everything - packing for the tournament, baking muffins, cookies, or preparing the coaches' breakfasts. I'll be up quite awhile, but that's okay. I am, once again, too afraid to sleep.

A good friend and mom of a diabetic child shared an article on facebook tonight. An article from a diabetes advocate and blogger who lost her son to type 1 when he was 13. The article, while more of an announcement and celebration, caught me off guard given the timing. Miss N is 13, and the words lost her 13 year old to type 1 diabetes hold more power to stop me cold than Superman or Popeye with a can of spinach.

I dread losing my child to type 1 diabetes at any age. For the most part, neither of us goes there - we go about our business, she attends school, plays hardcore volleyball. I work on building my practice, search for a local RN involved in diabetes care to work with and earn my CDE. It's all good, we tell each other in passing. 

Even when it's not. Even when she hates this disease so much that she eats and kind a sorta but not really forgets to bolus. Even when someone at her school sends her to the healthroom on her own sporting a terrifying 43. And that's just it, my psyche screams at the words just typed. They whoever they happen to be in any given moment, DO NOT GET IT - NOT FOR A SECOND because we can't explain it in a neat, tidy little package or logical excerpt. Diabetes, especially type 1 diabetes where insulin is taken around the clock, 24/7/365 without any breaks or holidays, never at the same exact rate as the day or hour before, never in the same amount for food, affected by colds, and stress, and WHO THE HELL KNOWS WHAT simply does not play by any set of logical rules or algorithms. 

Managing diabetes is an art that we attempt to make a science so that our brains feel better about what we're doing, and how well we're doing it. Sometimes we - make that  Ineed a reminder of that fact. 

Enter the second scariest low I've witnessed since her diagnosis - the one that took my breath away and hasn't bothered to return it yet.

This illness is about always being prepared. It's about treating symptoms and not numbers. 74 - typically a fair to partially hey that's great kinda number doesn't mean a hill of beans when she can't stand up, her eyes start to roll back, and she isn't making much sense. It's about the nervous flutter of "Do I need to grab glucagon, is 4 oz. of juice enough, where the hell is the cake I really supposed to figure this out on my own?" It's amazing how two tiny little words can be paralyzing... heart stopping.

What if? 

What if I wasn't there? What if I hadn't heard her, or been mad about the cheetohs? What if my anger at the cheetohs (which is really all about D when we get down to it) got in the way of my noticing? What if she hadn't spoken up? What if she feels like she can't, because of who she's with, or what's going on at the time? What if we couldn't find anything to give her - didn't know we'd run out? 

What if applies to seizures  coma, and yes death. It applies to the fear of loss and the guilt of finding myself unprepared. 

We fight constantly to live life in a way that cries loudly of our intent to support Miss N in living her life how she sees fit - diabetes be damned. We proclaim bravely that she can do everything her peers do, with just a little more work. But, it isn't just a little more work... it's a lot of constant, everyday, hard, time consuming work bordering on hyper vigilance. No matter how hard we try, we can't always predict the low, the high, when the insulin needs to get turned down, turned off (briefly), or cranked up. It's the trade off for tight control and the hope that our children will avoid the complications of diabetes that so rob their treasure chest of its quality of life

So tonight I will bake, pray, and check. A tear or two may escape my eye, and tomorrow she will play - beautifully, while I yearn for sleep and keep an ever watchful eye, ever ready to head off another low brought on by exercise. 

But- oh, does she ever love it. And that makes it worth every sleepless second.

06 April 2013

Musings of One Mixed Up Momma

Tonight brings a long anticipated, much needed, blissful sleepover away from home - for Miss N that is. That thought, swirling among my fuzzy neurons, buoys them with a sense of hope much needed. Sleep. Uninterrupted, luxurious sleep. God, I need that.

But wait...

Saturday? Crap, I need to change her site. And her sensor. Okay - move it to the morning. What's slightly more than half a day early going to harm? Outside my pocket book, that is.

Damn. She woke up on the low end and dropping steady. Need to delay infusion site and sensor change. Maybe before lunch, right after her hair appointment. I should be able to help with homework, work on the website, get some laundry in, and clean one bathroom before doing that. Right?

Wrong. A low, a high, feeling nauseous with trace ketones. (What the hell was that about?! A kink? Air bubble?) Troubleshoot all of that successfully - whew, being a pancreas is tough work. Now let's get back to that site...

What do you mean it's lunch time and dex shows you're rising steady? Can't your liver be like your pancreas and skip it's job for a bit? Dumb question. I like the life saving aspect of glycogen dumps - just wish they were timed better.

Deep breath. Lunch over, waited 90 minutes for insulin on board to hit its peak, BG 145 and there's still 1.45u active. Hmmm, it's dicey. My mind goes over all the variables. She's due at her friends in... LESS THAN TWO HOURS!! Ack! How will we know if the site's working? The sensor?

Oh no - I forgot to put the load in the dryer. Rats. (Because, right now - this very minute - is obviously the best time to think of this.)

We come up with a plan. Lukewarm shower, timer set to one minute. If I can insert the site in 2m, the sensor in one and drop her off 30m late, we'll know that it's working. Of course, if it fails, we're sunk. If it kinks... oh the horror. Guess I'll cross that bridge when we get there.

Wonder what the rest of my to do list looks like...

Nothing else is checked off.

And that is a day in the life of a pseudo pancreas. In fact, it's a relatively mellow, not so bad day in the life. Guess I wont' be sleeping uninterrupted tonight after all. Miss N will have to text every two-and-a-half to three hours until we're sure Dex and Lola are working together (CGM), and that her site's flowing nicely. Maybe next time.

I guess I can catch those last two episodes of The Walking Dead. At least I know that will keep me awake, and I might get to enjoy a glass - make that half a glass, of wine. ;)

05 March 2013

A Sense of Hope

A cure. The end of diabetes. The idea that my child might gain a reprieve from this disease. These symbolize things and ideas I not only refused to believe in - but something I challenged Miss N's endocrine doctor over on Day One. She had it coming - she used those infamous words... right around the corner, and five years. Day one, and I immediately recognized those phrases, and the underlying notion, as a bunch of malarkey. 

Not that I subscribe to a pessimistic viewpoint. I just don't believe doctors have the right to give false hope, or to take a patients hope away. Between my journey towards a degree in Molecular, Cellular Biology and my work as a registered nurse in acute care and hospice, I've seen plenty of both. In the two years and a week since diagnosis I've learned that patients living with type 1 diabetes for 30+ years suffered that refrain from their own Day One, and again and again as the years, then decades, passed by. 

My take on the idea of a cure encompasses supporting research, but not getting too excited; keeping our focus on healthy management and learning to live with D without letting D take over. I don't lack faith in a cure someday, but doubt that one in my child's lifetime proves unlikely. Until yesterday...

I read a post by Diabetes Dad over on his blog. It create some level of curiosity. At 10:08pm last night, while attempting to keep myself awake for the next BG check (unplanned new pump site - at bedtime, a not so great idea), the promised DRI link went live. Of course I jumped on it. 

Wow. I read. I cried. Keep in mind, I'm the quintessential don't talk to me about close loop pump / cgm systems, I'll never trust an implanted machine to do all the thinking / analyzing / work kinda gal. In fact, I pretty much expect that what we're doing now works, for the most part, and I don't expect that to change in her lifetime - at least not before Miss N reaches senior citizen status. Last night? That changed. 

Words like impressive, possible, not that far off swim through my mind. I admit to some level of surprise at the lack of enthusiasm bordering on anger I've encountered within the DOC by this latest we're close to the cure revelation. More so, I'm surprised at my own sense of hope in light of the news release. I truly believe that a cure is now possible, and not necessarily that far off. 

The research scientists at the DRI have proven their sheer genius - and an uncanny but much needed ability to collaborate and work multiple avenues towards a true biological cure - and the BioHub really is just that. A bio-engineered, (perhaps some component of nanotechnology) mini organ with vascular support and the appropriate helper cells to ensure viability. 

See, that's the problem with islet cell transplantation right now. Not only is it cost prohibitive at $250K / transplant, and a life time of anti-rejection therapy - something we can't even begin to contemplate for our youth. The islet cells in transplants don't last - the autoimmune process that attacked our child's pancreas in the first place attacks them, lack of oxygen, inflammation caused by seeding them into the liver - all these things place a finite time on the bio-availability and functionality of islet cells following transplant. Available only to those between 18 and 65 who struggle with the hardest to control cases of type 1, islet cell transplants involve trading one set of problems for another. Kim White does an amazing job of sharing the realities in her own blog

The folks over at DRI address all of that in the various approaches to the biohub - including the possibility of local versus systemic anti-rejection therapy, encapsulation that will protect the islet cells from autoimmune destruction, placement in an area of the body that would provide a rich vascular supply (oxygen and nutrients.) This isn't mere theory, or testing in animals, this is years of work by multiple scientists and research centers coming together and converging in what will likely be a true cure. Imagine implanting a device no larger than a quarter, and no longer needing insulin to manage blood sugars!! 

picture courtesy of DRI
One thing is for sure - everyone in the DOC is talking about this today, regardless of whether they trust this new avenue of research, feel it's another empty promise of 5 years, or share my excitement and enthusiasm. Nearly every DOC advocate and blogger has written about it sometime in the last 18 hours, and more is sure to come. Personally, I like the A Safe House for Islets  article best - especially from an informational standpoint. I find it of great comfort that Dr. Camillo Ricordi and others involved in this project want to avoid raising false hopes or promising timelines they can't meet. Their goal remains developing an accessible cure for millions - not a mere stop-gap management tool or sort of cure for thousands. 

The reality is that the DRI has achieved FDA go ahead for research and development, with human trials only one to two years off. Nothing we've heard about with the mice and other potential cure research avenues has reached this milestone - until now. (Personal disclaimer, I don't regard implanted closed loop pump / cgm systems a cure, but rather a more invasive maintenance system.)  And for once - I feel a genuine sense of hope about the possibility of a cure for type 1 diabetes.

12 February 2013

2 + 2 = 5 doesn't it?

Brother Bear lives for sports; eats, sleeps and breathes basketball. The amazing amount of work and effort he put into making the freshman high school team forces me to look at my own fitness journey, and wonder at his committment in awe. Already, he is working hard towards developing needed skills for a second attempt next year, for a chance at a spot on the even more difficult sophmore team. His tenacity and committment bring tears of pride to my heart.

Brother Bear fought hard to get here - harder than most realize. The head injury that turned his life upside down and inside out just two years ago inserts itself into his life in insidious ways, but he just keeps getting back up. Read this, write that, memorize this - all taks we've encountered in our own school journeys, but not through the hazy fog that continues to mire cognitive processes like so much pea soup. He never complains, just works harder, longer, quietly for things that once came easily, yet still emerge with a depth of brilliance and understanding. Slower does not equate to less smart. How I wish his teachers could truly grasp that concept. This kid is amazing, and not so much a kid but a young man becoming. Surpassing. Persevering.

He currently plays in a prep development league. Part of his plan to continue developing skills and pursue his passion. Games run every Monday night, right alongside my work with clients, so I've missed nearly every game. I love to watch him play, and worry less when I'm alongside his team. It's silly, I know. I just dread the call, the words. I hit my head again tonight. Which he did - last night. Heart stopping. That's not a phrase - it's a condition, a reaction, a moment of pure fear that immobilzes one's chest as it did mine. I hit my head again. Again.

Breathe. In. Out. Count to five, and breathe again. Listen.

He's okay, I tell myself. They have trainers, assess for concussion these days; pull kids from play until there's no question. He's okay because he believes that to be true. Because he makes it so. Because he's tenacious and accepts no other reality. He has goals, and intends to reach them; to see his vision take shape. My job is simply to trust; act as if, and to be there. Always ready wtih support.

We had a date last night. A date to work on math, which we did. I saw it, heard it - the struggle, the hurculean effort. 2 + 2 = 5, right? No wait, it's not. I got this. We waded through the hall of mirrors, the distorted images and twisting tunnels and tackled pythagorean triples, pythagorean theorem and its converse, geometrical proofs, parallelograms, triangles, area...

Homework often takes double time, even triple. Brother Bear never rests on his laurels. He works hard, and at times still comes up short. His brain heals slowly, and he refuses to cut corners or make it the central thing in his life. He is a teenager, basketball player, himself first - all the rest can get in line. Head injuries, post concussive syndrome? That stuff can sit on the sideline and wait; he gives it its due attention. And, he quickly moves on - to the next bigger, better, more important thing in his life.

Me? I sit back and remind myself. Sometimes, even momentarily, 2 + 2 really does equal 5. Just for the moment it takes to show us the miracle of being. Of persevering. Of quietly rising to the challenge and moving far beyond - not for the recognition of overcoming obstacles, but for the beauty and gift of knowing, intenally, I gave it my everything. Which he did, and always does.

11 February 2013

Glucose Patterns vs HbA1C

Say A1C in mixed company, and you're sure to get a few perplexed looks. Say it in a room full of type 1 diabetics and you might catch a few groans, a few questions, or possibly no acknowledgment at all. HbA1C, a lab test known as a hemoglobin A1C looks at average blood glucose over a span of time - typically about 3 months, though I'd personally have to say it's a weighted average, but I digress. Think of it this way, if a blood glucose check with a meter is a snapshot, then an A1C is like a panoramic photo.

The familiarity of this term in the DOC can elicit undertones of dread and resentment, or beams of pride - which is to say we often turn the quarterly A1C into a report card on just how well we're managing diabetes and blood glucose trends. That last is particularly true of us D mamas, even when we try like crazy to avoid doing so.

Miss N, my lovely, days shy of turning 13, full of life (but currently hates D with a passion) daughter just had one of those visits where we could have turned her amazing A1C into a brilliant report card - except we didn't want to. In fact, we both walked away feeling like that fault lies with her care team. And we weren't happy with or impressed by it.

You'd be hard pressed to find someone in the DOC who can't relate to or hasn't heard the phrase look at the patterns, not individual numbers. For us, it's become a mantra these last three or four months. That's how long we've been troubleshooting excessive morning, afternoon, evening, and nighttime highs. What's that you say? Oh, right - excessive highs all ding dang day long - interspersed by random inexplicable lows. Inexplicable because I am absolutely anal about avoiding stacking insulin with corrections.

Yes, I admit it. I fiddle - a lot. Every single week I sit down and look at her glucose patterns, her basal rates. I even created an excel file where I can overlay the two and quickly identify areas where we need to raise or lower basal rates, tweak insulin to carb ratios, and wonder if her ISF is accurate. We're still just shy of two years into this journey, and it's all too easy of late to get frustrated and feel like giving up. Except I can't - because she's my daughter, this is her life, her health and livelihood - if I'm going to get frustrated and give up just two years in, what does that say to Her? What kind of example does that provide? Not a good one, that's for sure, and in the end - I don't have diabetes, my kid does. Simply put, parents DO NOT give up on their kids. Not ever. If she can rock this diabetes thing (and she does), then I can manage the number crunching regardless of the inanity of it all.

For the first time in a long while, we approached her quarterly endo appointment with a mixture of dread and desperate hope. According to the various software programs we use, her predicted A1C this time around kept coming up around 7.9 - one program put it at 8.2, a rather huge jump for Miss N, but not outside the realm of possible or even expected. In the last three months she's experienced her highest highs (500+) and lowest lows ever (39, technically not her lowest, but the 24 was entirely my fault one week into this mess. We won't go there.) Miss N can rock the square and dual bolus, knows how various foods and exercise effect her body and glucose level, but the last 90 days would have tried even the patron saint of patience. So we looked to the center and her care team for answers. As we left for our nearly two hour trek, I sensed we both saw this visit as our last salvation from a never ending nightmare.

How wrong we both were. Miss N's A1C in question. An inexplicable, unwarranted, and truly mind boggling 6.4


Despite the fact that our visit lasted more than two hours, despite the patterns reflected in graphs, the logs, and our desperate plea for help, all we heard - over and over again, was what an incredible job she (and I) are doing in managing her diabetes. Huh?

That A1C makes no sense alongside three months of logs, graphs, and various printouts. I suppose we could have just soaked up all the praise, gone along with everyone treating that stunning (I mean mind blowingly inaccurate) A1C as some sure sign of success. At some point the PA realized we weren't on board with all the celebration surrounding this single, simple number. 6.4 - what does that even mean? How is it possible? Do you not see the never ending string of 300+ values on the two week record sitting in front of you? So the celebration turned to chastisement.

You really need to stop perseverating on a single number. You need to look at the patterns, not the numbers. We're not going to change anything, that A1C is just too good. Ah, hello? Did you not just say - a hundred times over - to look at patterns rather than a single value or number?
That's all 6.4 is - a single number. It could be a lab error, a mix up (there are a handful of other kids being seen simultaneously); heck, it could be accurate, but then please explain to us how that is possible in light of the patterns we've set before you.

By the time we got home, Miss N was in tears. The help we so desperately craved - relied on, expected. It didn't exist.

The message they sent us out the door with appears to be the message our care team need head more than us. It's just a freaking number, and by itself it is meaningless. My child is not a single number - she isn't even just a diabetic. She's a (nearly) teenage girl struggling with feeling miserable, and desperate to achieve glucose trends that don't leave her feeling lethargic, nauseous and unable to see due to blurry vision and headaches. Anything greater than 170, and that's how she feels. It's wretched, and my heart breaks to watch her Herculean effort to contend with that, stay up on homework, and give 110% to volleyball.

At her request, I'm looking for a new endo center - but even that is a bittersweet task. She's seen by an endocrine doc at what is supposed to be the Golden Standard for pediatric diabetes care. I know it's usually us parents of CWDs that need the reminder, but today I'm shouting it from the rooftop and hoping like mad that every endocrine doc can hear it. An A1C is not a report card. It's a single, simple number. It fits into a context, and is but a small part of a much larger picture. Even more than that, it does not and never should define my daughter or her worth.