Monday, September 29, 2008

The Cursed Common Cold

Well, the adventure continues. A cold virus has entered our home and our lives. (Cue the ominous and foreboding music...)

Jazmine, my oldest daughter, came down with the symptoms late Saturday. By Sunday morning it was a full-blown cold in all it's mucus-y glory.

Now, my girls are still learning the concept of sharing. They are reluctant to share toys, food or even a spot on my lap at story time. However, as sure as I'm typing this they will no doubt share this amoeba.

As any parent of a child with type 1 will tell you, a cold or flu, normally innocuous in most healthy children, is somewhat of a nightmare for children with type 1 diabetes. Blood sugars soar and it is incredibly challenging to maintain the upper hand. I had to deal with a virus not too long after Jenna's initial diagnosis. At the time she was on multiple daily injections and I found it unbelievably stressful to manage the sudden increase in insulin needs. The fear of giving too much insulin is well-grounded and yet she constantly needed more and more as evidenced by her repeated high blood sugar readings.

Well, now Jenna is on the pump and I'm certain this is going to be at least a little easier to handle this time around. But it's another 'first' and I always stress with firsts.

The question now is when? It's a little like seeing the flash of lightening and waiting for the window-rattling clap of thunder that you know is imminent.

Best I can estimate, it took Jaz about 6 days to incubate this little bug, since I figure her exposure took place last Sunday when the neighbours visited with their little toddler who was in constant need of a tissue. If Jenna's exposure took place this Saturday, then she is due to become symptomatic by about Friday of this week.

Perhaps a better analogy would be awaiting the land-fall of a hurricane, in keeping with my weather theme. You know it is out there, gaining strength and momentum and moving ever closer toward shore. You have enough time to board up the windows, gather some emergency supplies then hunker down.

So I'm assigning myself some preparatory reading from my well worn, dog-eared copy of Pumping Insulin and I plan to replenish my stock of children's Tylenol. I may even place a preemptive call to my daughter's endocrinologist to obtain some council on how to change Jenna's basals in the event of a virus. Then we'll all hunker down and wait out the storm in hopes that it passes quickly.

Wednesday, September 24, 2008

Maintaining Perspective

Every morning before Jenna was diagnosed, I would wake up and if both my children were still sleeping, I would breath a sigh of relief, visit the bathroom in stealth mode in hopes of making it back to bed undetected by little ears and, if successful, steal a few more minutes of rest. All that has changed now.

Ever since Jenna's diagnosis, I wake up and if all is still quiet, I wonder and worry that maybe Jenna isn't just catching a few more much needed winks, but that something might be... well... wrong. I try to fight the urge as long as I can, but so far I can only make it 5 or 6 minutes before curiosity and all out fear get the better of me and I am compelled to get up, go into Jenna's room and get some sort of confirmation that she is indeed just sleeping. Usually that confirmation comes in the form of movement, a rustling of her bed sheets while she sleepily rolls over, a long, content sigh. Or she may even turn and look at me, having heard me enter, because she was awake too, enjoying the comfort of her bed for a few more minutes.

This is just a portion of the multitude of worries we parents of diabetic children go through every single day. It's bad enough having the standard worries of any parent. Pile on all the worries of managing your child's diabetes and you can pretty much kiss any rare worry-free moments goodbye... FOR GOOD! It's a 24 hour a day, 365 day a year wrap. And I recently read another mom of a diabetic child who is now grown say that she still worries. Every time the phone rings at odd times she is fearful for her child's well-being.

Now, as parents I know that this is what we signed up for. I didn't enter into this incredible journey naively. It starts with pregnancy and all the uncertainty it carries. Then there's the first year of your child's life; full of wonder and worry. Toddler-hood brings with it the need for parents to be ever vigilant, acting as your child's common sense in the absence of their, as yet, undeveloped good judgement. Heck, little one's at that age think they can fly if they flap their arms hard enough!!

But at a certain point you know you can look forward to a time when all those basic worries that are present almost every moment of every day subside because your child has reached a level of maturity and gained enough wisdom that you can relax a little. I'm guessing that's about when your child can say to you, "I'm going outside to play", and you can respond with, "Be back for supper", instead of having to drop what you are doing, don your outdoor gear and follow so that you can supervise. I have yet to reach that stage with either of my daughters.

Now add diabetes into the mix. It compounds and prolongs the worry factor. Sometimes I handle the stress and worry like a pro. Other times I am wracked with worries to the point that I fear I may buckle under the pressure. Constantly trying to stay one step ahead of things, studying blood sugar numbers, looking for trends in an effort to avert possible disaster, contemplating literally every ounce of food that Jenna injests, counting carbs, having to plan ahead and pack just to go out to the park for an hour, counting more carbs, trying to keep a running inventory of the incredible amount of diabetic supplies we have to keep on hand to avoid running out of something crucial, like test strips or carb tabs or INSULIN, for crying out loud, just to list a few! It is overwhelming at times!

I guess I can look forward to the time when Jenna can assist in the management of her diabetes, when she is able to feel she is low and say so. Or when she can go ahead and perform a blood sugar check on her own. Any help will be so welcome.

But for now the worry continues and the knots in my neck and back will stay firmly knotted. I will keep plenty of concealer on hand to cover up those dark circles under my eyes that tell the tale of a sleep deprived parent and I will try to keep my sense of humour~ keep enjoying life with my beautiful young children, and keep my fluid intake up in a vane attempt to counteract the aging effect this is having on me. I will count my blessings because they are abundant, and I will never make the mistake of thinking things can't get any better or worse... because, of course, they can.

Saturday, September 20, 2008

Misbehaving Pizza Carbs

The only thing worse than spending half the night chasing a rogue high is getting up in the wee hours to do a routine check and getting slugged in the gut by a 3.4 blood sugar! Such was the case a couple of nights ago. At 2:00am my hubby and I found ourselves having to shake off the sleepies, crack open a juice box and attempt to feed o.j. to our incredibly sleepy toddler.

Jenna doesn't often get juice these days, for obvious reasons. So when she has a low and requires juice or carb tabs (which she calls 'vitamins') it's a pretty exciting occasion for her. However, this night, the need for sleep was overriding her usual enthusiasm for these "treats". She was a very reluctant participant in our pre-dawn juice party, to say the least.

After much coaxing and pleading Jenna finally woke up enough to take a few sips of her orange juice. It doesn't take much for Jenna to boost her numbers back up to the good range so a third of the box's contents consumed, approximately 5 carbs, was sufficient to put my mind at ease again. Then it was a matter of reading Jenna a short story to help her resettle, making a trip down the hall to comfort and reassure my older daughter, Jaz, who by now was awake and upset by the goings on, set my alarm for half an hour to do the necessary recheck ensuring the juice did it's thing, and settle myself back into bed.

In addition to waging war on night time hypos, I've been working on cracking the pizza carb code. I just can't swear off pizza for ever. My family enjoys it too much and it's a great way to have a night off occasionally when I've forgotten to defrost something or I just need to spend an evening keeping the couch from floating up into the atmosphere. Tonight was one of those nights I feared the sofa may just slip into orbit so I ordered the pizza then promptly got to surfing the net, looking for nutritional information on pizza.

I found a great little website,, that lists over 500 restaurant's menus and 70 000 foods and our favourite pizza delivery joint just happened to be on here. I was able to get a more accurate carb count and judging from her bedtime reading, I think I finally cracked the code!! How exciting! I do tend to feel a little like Indiana Jones at times with the way diabetes has me running through a continuous series of obstacles, dodging traps, solving riddles and searching for clues in an effort to help my daughter obtain her "holy grail"; perfect blood sugar, or as close to perfect as we can get.

Diabetes has a way of keeping you on your toes, and just when you start to relax and settle back into your seat, it throws something new and unexpected at you to remind you NOT to get too comfy. You've got to keep your wits about you. Life with diabetes certainly isn't dull.

...and as if the fates have seen fit to help me demonstrate my point, just did a midnight check on Jenna and she's 18.1! A correction bolus is given and I must accept the obvious fact that the pizza carb "code" remains uncracked. Curses! Foiled again! What am I doing wrong?

Monday, September 15, 2008

A Diabetic Rite of Passage

It was inevitable. We were warned about this by our diabetes nurse in hospital when Jenna was just diagnosed. I wasn't the least bit phased by it at the time, but now that it has happened, my heart hurts for my little girl.

The tips of Jenna's two index fingers have developed little callouses from the constant pokes with the lancet to test her blood sugar. My two and a half year old, beautiful little girl now sports the trademark of a seasoned diabetic.

I know it isn't that big a deal, and I am without a doubt thankful for my blessings. It could be so much worse. But still I feel that familiar feeling of sadness that I felt so acutely upon her initial diagnosis every time I push that spring loaded trigger button and squeeze out her precious blood, drop by ever-loving drop.

When Jenna was first diagnosed, I remember friends and family saying that if she had to get diabetes, better now while she is so young. I remember at the time feeling both grateful for this small mercy and profoundly saddened by it at the same time. On the one hand, yes it is true that Jenna will be spared having to change habits that had been years in the making and will never mourn the loss of her far less complicated,pre-diagnosis days. But on the other hand, how tragic that she will never know what it's like to occasionally eat with reckless abandon, or to run out the door to play with only the clothes on her back and not have to worry about packing glucose tabs or her glucometer with her, not to mention her ever-present insulin pump strapped to her little waist.

The thought that really gave me pause was the one that popped into my head within the first 24 hours of her diagnosis; My daughter can't survive without the help of modern medicine. Jenna is sentenced to a lifetime of being a heavy consumer of pharmaceuticals for her very survival. She will never know any different.

Jenna is becoming more curious about her diabetes. She is asking questions and making statements, looking for confirmation and reinforcement, saying things like, "I have diabetes, right? I need my pump, don't I?" I know she is attempting to understand and deal with it all. I also know that this is just the tip of the ice burg. Over the years there will be many more of Jenna's questions to answer and emotions to feel and they aren't all going to be as positive and accepting as they seem to be now.

I guess in the grand scheme of things a couple of little callouses isn't the end of the world. But to me they represent all the pain, and trials Jenna has had to overcome and everything she has yet to endure throughout her life with diabetes. And because of that my heart breaks a little everytime I look upon those precious little two year old fingers.

...but the testament they are to her strenth and courage is what makes me fill to bursting with pride.

Thursday, September 11, 2008

Reflecting and Projecting

It's been nine days and three infusion set changes since Jenna's pump start up and I feel the need to review these past nine days and contemplate what I've learned about pumping insulin.

First, carb counting is definitely one of those things in life that takes practice. A few times this past week we have made some mistakes with our counting and Jenna's blood sugar has gone high as a result. I was using a small pad of paper and pen in the kitchen to document carbs as I prepared Jenna's meals, but I found this to be somewhat frustrating. The pad of paper was in the way and taking up valuable kitchen counter space, when it was present at all. Misplacing it and having to hunt for it often made the difference between a hot meal and a cold, unappetizing one. And all too often food counts were forgotten.

I came up with a solution and promptly made an emergency run to my local office supply store to purchase a little dry erase board that could be mounted to my refrigerator. Here I can jot down the carbs of each food item as I portion them out onto Jenna's plate. The list and the carb values can easily be edited with Jenna's requests for seconds or decisions to eat only a fraction of what I have given her. This has proven to be a far better system with less chance of miscalculation and I have those precious eight or nine square inches of counter space back.

The next thing I have learned is that pizza is no friend to diabetes. Or perhaps I just haven't found out how to handle those pesky pizza carbs just yet given my lack of experience. But one thing's for certain, I'm a little gun-shy of the stuff after a pizza supper resulted in my husband and I tag-teaming our way through a night of every two hour blood sugar checks, ketone checks and correction boluses while we chased a stubborn high. Not fun.

Something else I learned the hard way is never, EVER forget the pre-meal blood sugar check. During my older daughter's birthday party last Sunday, a good half hour after I brought out the lunch buffet for our little guests to enjoy, we realized we had forgetten the all too important check before our little food-loving toddler tucked in. Luckily, anticipating the party chaos and confusion, we had planned ahead and assigned one parent the task of watching and documenting everything Jenna ate so we had a relatively acurate carb count to work with. But still, how the hell do you bolus using the easy carb function when you don't have a blood sugar reading to enter?! We had to guess based on her mid-morning reading. But again we were doomed to chase a mild high for the remainder of the afternoon.

And finally, something I just want to throw out there as a minor dilemma rather than something learned; how can I convince my two year old insulin pumping daughter that she can sit in the tub and enjoy her baths just as she did before the pump? She is incredibly anxious about baths now where she wasn't before and I'm certain that is because of the presence of her cannula. In fact she LOVED her baths before she wore the infusion set. Now she is reluctant to get in the tub. If I can convince her to get in she absolutely refuses to sit down. Kinda makes me sad because bath time was such a fun time for Jenna and now she dreads it. It's minor, but I'd love to find a solution.

All things considered, I think we have survived the first week of pumping farely well. It has by no means been easy, and sleep was all too often a necessary sacrifice. But this truly has been worth the pain and exhaustion. Jenna is enjoying better blood sugar control, especially at night and her freedom from multiple injections has been a blessing. Jenna loves eating. She is one of those rare kids that will try anything and more often than not likes what she tries; a real pleasure to cook for for a Mom who enjoys cooking. She has been more free to occasionally enjoy her favourite foods in slightly greater quantities than she was before. It does my heart good to see her really enjoying meal times again.

Looking to the future I can't help pondering what lay ahead, technologically speaking. As advanced and incredible as this insulin pumping technology is, it is without question going to continue to advance and improve. Will there be a day when we reflect on this time in our lives and think how primitive this technology was in contrast to what we might be working with only a few short years from now? Or perhaps we will be cueing up for that cure that is talked about and promised so much. Hmmm... wouldn't that be nice? I love you, little pink pump, but I'd drop ya in a heartbeat to be rid of diabetes for good.

Friday, September 5, 2008 just do what you have to do.

I recently had the pleasure of visiting with some family members that we rarely get to see due to geography and the business of life. These family members include an eight year old daughter with a chronic metabolic disorder in the same ballpark as diabetes. We have a good deal in common.

I sat talking to Liz, this little girl's mother, comparing notes on what it's like to have a child with a chronic condition and what it means for the lives of family members on a day to day basis. I reflected on how my heart went out to them when I learned of their precious infant daughter's diagnosis who was, at that time, only one year old and I wasn't even a mom yet, let alone the mother of a child with diabetes.

I explained how, at the time, I didn't know where they were getting their strength to endure the heartache I could only imagine they were experiencing. I wondered how they got through it.

Liz looked at me with a mix of tender compassion for a fellow mom who now "knows", tempered with the no-nonsense, matter-of-fact attitude one develops after having to buck-the-hell-up for years and said, "Like any parent in our situation, you just do what you have to do. You find it in you somewhere to do whatever it is that you must."

I am finding that to be so true these days. I am far more sleep deprived now than I ever was taking care of newborns. And yet, somehow I only feel the effects of that occasionally and then it's just a fleeting moment of sheer exhaustion that seems to fade as quickly as it develops. It's as though I don't have time to be tired so I just ignore it.

I have noticed, especially in the last two days that I keep having to stifle an urge to just sit and weep. By no means is it coincidence that this has occurred at the same time as Jenna's pump start-up. I am once again on high alert due to this new and miraculous technology. We are still trying to learn all the intricacies of the pump and how to master it's use. Because with practice and eventual pump fluency, we are virtually assured of far better control and an easier go of things. But it's the 'getting there' that is causing the hastening of my own personal aging process.

Today was our first site change since her official start-up in hospital three days ago. I was stressed from the moment I opened my eyes early this morning anticipating this necessary task.

Insertion sites need to be changed every three days to prevent mal absorption of insulin due to a weary site and to maintain healthy skin integrity.

So Jenna was slated for a post breakfast site change and a juicy gob of EMLA was applied to the upper outer quadrant of her left little buttock and covered with a Tegaderm a good hour and a half prior to the procedure to numb the area and make the process much more kid friendly. Even still, Jenna has gone through too much these past three months to just concede to yet another procedure.

We get the job done, albeit through Jenna's tears and constant squirming, and everything seems ok. That is until an hour later, after a blood sugar check and a consequent bolus to correct a mild high, Jenna reacts to obvious pain at the insertion site when the insulin infuses.

OH GOD NO! More stress! The infusion shouldn't hurt and if it does, it could mean the cannula is situated next to a nerve and will likely need to be removed and reinserted.

I make a call to our diabetic nurse educator and leave a message explaining things. Impatiently, I call again and again over the course of the next hour. I start getting annoyed at the system and wonder why there isn't someone available around the clock; an actual PERSON who knows my daughter and all about her diabetes and can advise us of what to do in any given situation; someone who's sole purpose is to sit by the phone and await my calls for help!

This is one of those moments I want to sit and have a good cry.... but don't, of course. Instead I opt for engaging in petty bickering with my spouse and complete impatience for my older daughter and the constant stream of questions and requests that is the hallmark of any inquisitive five year old.

I pick up the phone a third time in frustration and dial her number. Her voicemail picks up immediately with only one ring and I surmise that she must have gotten my message and is trying to call me at that very moment. But my impatience is potentially going sabotage her efforts! I hang up with lightening speed and hold the phone in my hand, staring at it... daring it not to ring.

After a very pregnant pause... it rings. Relief.

After discussing the morning's events with her, we decide the best course of action is to wait until we bolus Jenna for her lunch and see if she continues to feel pain. If she does, we must do another site change.

So after lunch, I hold my breath as I bolus enough insulin to cover the carbs Jenna just ate. Not even so much as a flinch! She just keeps chattering away in her highchair examining the sticky jam on her fingers from her pb and j sandwich.

In disbelief I ask Jenna if it hurt. Completely oblivious to the emotional torment I have just endured and with the adorable coyness that only a two year old can get away with, she says "No mommy."

...and that was that.

Thursday, September 4, 2008

Lesson learned; Never let down my guard!

Just when I think I have a handle on this diabetes business, a curve ball is hurled at me with incredible force to snap me back into an uncomfortable, insecure state of humility and show me that I can never rest easy or get too confident. I must always expect the unexpected.

After enjoying a second day on the pump and good blood sugar levels with almost unprecedented consistency, suddenly all hell has broken loose. Jenna had a high reading before bed that we corrected with a bolus and mistakenly thought that would fix everything. She did come down slightly after two hours, but her midnight check is high again and now there is a small amount of ketones present in her blood. The plot thickens...

I am forced to ponder the cause of this unexpected and stubborn high; was it the stress of the dentist visit this afternoon causing a release of adrenalin and glucose? Jenna is not fond of the dentist to say the least! This in combination with a pizza supper~ notorious for wreaking havoc on blood sugars~ and an underestimation of the carbohydrates present in pizza crust, coupled with an inability to discern exactly how much of the greasy crust Jenna actually consumed due to her penchant for food play and an uncanny ability to mangle food items beyond recognition rendering them virtually immeasurable...

Or perhaps there is something wrong with the infusion itself and we have solved nothing yet but must wait another two hours to confirm this with another check. Meanwhile, her blood sugar will continue to climb, more ketones will form and her little body will endure more stress.

We bolus for the high blood sugar and give extra to clear the ketones and in two hours we will test again to ensure the bolus worked.

Fingers crossed that it has, because if it hasn't, we are looking at an insulin injection and a site change as there could be something wrong with the cannula; a kink or blockage of some sort. We would have to do it without the help of EMLA, a topical numbing agent that makes needles virtually painless for little ones, as it requires at least an hour to take effect. And doing it in the middle of the night, who knows how cooperative our sleepy little toddler will be with the whole ordeal!

If it does work... LOVE! And maybe I'll get a few hours sleep tonight after all. Fingers crossed, people... fingers crossed...

Tuesday, September 2, 2008

Proud Pumper Parent

Today marks the beginning of Jenna's diabetic journey with her new best friend strapped around her waist; the Animas insulin pump in pretty metalic pink.

It's been a long day of sleep and food deprivation for all family members, and much information and technical training has been crammed into this cob-webby, overburdened, 36 year old brain, so I'm afraid this pivotal entry must be brief. I have two night time blood sugar checks to do tonight and my bed beckons.

More on Jenna's pump start-up in the days and weeks to come, but suffice it to say Jenna is getting on quite well with the pump. She seems pretty proud of it, actually, and doesn't miss the MDI's one little bit.

It was so nice at supper tonight not to have to respond to Jenna's usual evening statement, "I don't need an insulin shot, Mommy", with "Sorry sweetie, but you do." Instead I was able to reply, "No you don't sweetie. You have a pump now!"