Tuesday, August 25, 2009

What NOT to Say About My Kid

Jenna routinely sees a physician about once every three months as part of her diabetes management. These are mainly just check-ups during which her log numbers are reviewed as well as her current pump settings. Diet issues, if any, are discussed and a HgA1c is done. The majority of these appointments have been with pediatricians. Twice a year we see her endocrinologist. This is likely the same routine most diabetics follow~ at least type 1, pediatric diabetics.

About six months ago a new diabetic clinic was set up at our local hospital with new funding obtained from the government. The clinic was staffed with a Diabetes Nurse Educator, a dietician and two pediatricians who, I was told, have considerable experience with type 1 diabetes. This meant that the original pediatrician, the one who saw us in the emergency department for Jenna's initial diagnosis, would no longer be Jenna's attending. A new pediatrician was to take over Jenna's care.

Our last appointment nearly two weeks ago was the second one we have had with this new doctor. Prior to actually seeing the doc, our nurse took us to perform the standard, preliminary height and weight check. It was noted that Jenna is tall for her age (something she gets exclusively from her 6'4" father), growing one inch since May and has gained 1 pound since her previous appointment; all good things. We then sat in a conference room with our nurse, the dietitian and an observing pharmacy student, having, in effect, a care conference on Jenna. Her log book was reviewed and the usual praise for how well we are doing was received from our nurse. The dietitian asked if we had any questions or concerns with regards to diet and carb counting. I explained, as I usually do, that I have a good handle on Jenna's diet and how to carb count and that the only thing I am working to perfect is how to handle fatty meals as they tend to creep up on Jenna long after the meal is consumed. I explained that as a result of this, I seldom provide meals containing excessive amounts of fat as it is a)healthier to eat a low fat diet and b)easier on Jenna and us to keep the fat down and not to have to check her multiple times in the night to battle a stubborn, delayed high.

During this portion of the appointment opportunities are presented to discuss concerns and praise is offered to reinforce our efforts and hard work for maintaining good control over Jenna's blood sugars. Compliments regarding how polite and lovely our girls are are expressed and graciously received. In summary, I am given the pat on the back I don't know I need until I get it. It's hard work trying to stay one step ahead of this disease 24/7, especially when virtually all of the leg work is up to myself and my husband to perform. Jenna, being only three, doesn't do much yet with regards to the daily tasks of managing her diabetes. Oh, she can get out a test strip (often popping the cap and flinging all the strips unceremoniously hither and yon for me to have to pick up) and insert the strip into the meter. She can even prepare the lancing device and press the OK button to administer a bolus. And occasionally she can recognize a low for what it is and sound the alarm. But that's about the extent of her involvement. So these "Sunshine-Up-The-Butt" appointments are a bit like gas in the tank for me.

Enter our new pediatrician; a woman probably no more than ten years older than I with a stressed expression on her face. She flips through Jenna's log book, making a comment about how all the numbers make her head swim. This doesn't exactly instill confidence in me regarding her abilities to interpret log data. She then leaves the room while our nurse takes us to an examination room where the good doctor, we are told, will join us again momentarily. Within a couple of minutes the doc arrives once again on the scene. By this time we have been in the clinic for over an hour and my girls are feeling a little restless. Jenna amuses herself by repeatedly sitting up and lying down on the examination table enjoying the crinkly noise of the white paper that covers it. This was an obvious source of annoyance to the doctor and she showed her impatience by asking Jenna to stop, making some mention of her coffee not having kicked in yet. Not necessarily the worst thing in the world, but it was a little odd. Not long after, she reprimanded my oldest daughter when she pushed herself up on the counter in the exam room to get a paper towel from the dispenser which was otherwise out of her reach so that she might wipe her hands. Again, this isn't necessarily jaw-dropping, but at this point I'm wondering why this doctor got into pediatrics if she doesn't have patience for children displaying normal, child-like behaviour.

She then conducted a brief physical examination of Jenna. Sensing her shortness, James suggested that he take our girls back out to the play area when it seemed she no longer required Jenna's presence, while I wrappped things up with the doctor. When it was just myself and the doctor present, she offered up some half-hearted praise while she looked at papers in Jenna's chart. Then, upon spotting Jenna's documented weight, punctuated her token approval with "...she's a little chunky..."

I stared at her unsure, at first, of how to respond and in disbelief that a professional would use such a term to describe anyone, let alone a three year old little girl that is tall for her age and to anyone with eyes, most definitely NOT chunky. She had just performed a physical exam! She palpated her little abdomen! She must have noticed the absence of "chunk"!

And I became angry.

"Are you implying that my child has a weight problem? Because I may have to get my back up!" was my initial response.

She must have sensed that she had awakened a ferocious beast because she began dishing out compliments in an effort to put out the fire she so recklessly started.

"She's doing fine. I'm just saying that we should be alerted to a possible weight problem. Don't worry." she replied as if that would make me feel less offended.

"I'm not the least bit worried. I can't believe that you would say such a thing about a toddler who is still in the process of shedding baby fat and who is already at greater risk of developing an unhealthy relationship with food and a distorted self image by virtue of the fact that she has diabetes; not to mention the fact that she is a female who will enter into a society that has cruel and unrealistic standards of what is considered beautiful. With such disorders as diabulimia and anorexia plaguing young women with diabetes, I'm disappointed that you would be so careless."

More compliments and praise were expelled like so much water on a blazing inferno. But it was too late. I had already made up my mind that this would be the last time we would see this physician. And when she asked me if I was attempting to offer Jenna a low fat diet, I was incredulous and explained that if she had been present for the meeting with the nurse and the dietitian she would realize how ridiculous that question was. She quickly withdrew it.

I spent the rest of the afternoon trying to quell repeated surges of anger each time I recalled what she said in my mind, telling myself to just let it go.

Diabetes is just as much a physical disease as it is a psychological one. This disorder can play havoc with one's head. I am making every attempt to raise healthy, happy, self-confident, well adjusted little girls. I want to surround Jenna with kind, sensitive health care professionals who aren't going to bring their shitty personal crap to work with them. I'll be damned if I am going to take the chance that some thoughtless, short-on-patience, fat-phobic doctor will make a stupid, careless remark with regards to my child's body that would sabotage my efforts to meet that end. Because the next time this doc decides to let her lack of sleep, patience or tact get the better of her, Jenna might still be in the room.

"Doctor... you're fired."

Wednesday, August 12, 2009

Our Worst Nightmare

What's the thing every parent of a diabetic child fears the most? The thing that causes us to set alarms in the wee hours, to wake with every peep our child makes and to awaken each morning with the uncontrollable urge to dash into our sleeping child's room to make sure they are OK? Nighttime Hypoglycemia. It is that terrifying "snake in the grass" that we are forever in fear of. And recently I was made aware of a family who experienced that very thing and shared their experience on their blog. You can read about it here.

This is a family who did everything right. They monitored their daughter's blood sugars diligently, gave snacks for impending lows and bolused for highs. They checked and rechecked and left nothing to chance. But still, this silent enemy ambushed their precious little girl in her sleep. Luckily, she came out of it just fine and was back to enjoying her vacation with her relatives later that same day. But the anguish her parents had to endure had me sobbing as I read their account of what happened early that morning. It could just as easily have been my little girl in that scenario. I could relate to their story all too well, up to the point of them discovering their little girl unresponsive with foam on her pillow; evidence of the seizure her little body had endured not long before they entered her room.

In my previous post I briefly discussed how exercise is such a boon to people with diabetes. And while it is true that exercise can reign in a blood sugar and have the long term benefit of helping to prevent cardiovascular complications, exercise can work too well and send a person into a state of hypoglycemia many hours after the actual activity. This makes it especially challenging to anticipate the effects physical activity will have on blood sugar levels, especially when things have been seemingly normal for a solid 18 hours, or as "normal" as things get with this cursed disease.

I read stories like this with all the empathy that anyone who can relate to what it is like to parent a child with type 1 diabetes would have. I weep for parents who have had to go through such gut wrenching experiences and feel their pain as if it were my own. It could be me one day blogging about such an experience, as much as I hope and pray that it won't be. But it's what we all face as we continue our non-stop, day and night battle against this lawless and relentless disease.

I also read them to learn from what others experience so that I might side-step the same pitfalls and avert possible disasters. But for the life of me, I can't figure out what I could have done differently here, shy of standing guard beside my child's bed with glucometer in hand performing hourly checks with carb tabs and glucagon at the ready.

I can just see my diabetic nurse educator's face now if I were to tell her I stood guard one night while my daughter slept after an afternoon of swimming in hopes of avoiding a nocturnal hypoglycemic seizure. She would look at me like I had two heads! During our last visit I told her that I still check Jenna at least once in the night most nights to ensure she is safe. She was shocked and I think I even detected a tad of judgement in her eyes that I would be so paranoid as to do this; further evidence that one must live this to understand it. Let her know the hourly unpredictability that type 1 diabetes can dish out with her own child and THEN judge my actions. Some things just can't be taught. They must be experienced.

Needless to say, this family's unfortunate encounter with nocturnal hypoglycemia has had quite an impact on me. It makes me realize just how unpredictable this disease can be. Is it any wonder we parents of children with type 1 diabetes feel compelled to reach out to one another for support? We are all performing a tight rope act while we cradle our precious children in our arms. The pressure is immense. The stakes, unfathomably high. And there is no getting off of this tight rope. We've been thrust on it without our consent and without warning. Within our ranks we find no judgement, only compassion and understanding. Because we know, really know what it's like.

Monday, August 3, 2009

Our Incredible Summer So Far...

Where have I been? Why I've been enjoying one of the best summers I've had since I can remember! A summer filled with travel, adventure, growth and the realization that Diabetes will NOT slow us down. We have enjoyed every minute of this sun-drenched season and will continue to squeeze every last drop of fun from it until the nights cool, the garden fades and school resumes.

Travelling to Ontario to visit my family at the end of June was our first big trip since Jenna's diagnosis and as I mentioned here before, the anticipation of this trip caused me much anxiety. Common sense told me I had little to fear and I just needed to get this first trip under our belts to prove that everything was going to be OK. And it was. In fact it was awesome! We had so much fun with my sister and her family and the worst part of the entire trip was having to say goodbye.

Jenna's blood sugars were a little elevated for the first day or two. I attribute this to the stress of travelling and perhaps the time change. But for the rest of our stay her numbers were pretty darn stellar, considering I guessed at a lot of the carb counts and seldom weighed anything, in spite of my sister providing, among other things to make our life easier while there, a lovely food scale.

Yes, I couldn't have asked for much better control during our stay. When things really got dicey was after our evening flight out of Toronto, homeward bound, arriving in Victoria around midnight Pacific time. That meant around 3:00am Eastern time which was the clock Jazmine and Jenna were on. Jenna's numbers had trouble staying out of the mid to high teens for a good two days afterward. I'm going to pin that one exclusively on the time change and severe sleep deprivation, in spite of two solid hours of sleep Jenna was able to log while we were 40 000 feet off the ground.

A camping trip to Tofino/Long Beach, a favourite destination of ours, on our very own Vancouver Island marked mid July for us. We experienced the beauty of Western Canada's temperate rain forests, basked in the warm sun and played in the Pacific Ocean surf, building sand castles and flying kites for three all-too-short days. It was heaven.

We encountered a minor hiccup on our first day in Tofino when, on the morning of our departure, we performed a site change on Jenna prior to leaving. The new site was on her abdomen, a place she had only allowed us to do an insertion on once before. Jenna suddenly became anxious about the insertion just as I was performing it and recoiled, contracting her abdominal muscles causing a skin fold to occur beneath the new infusion set. I fiddled with it and was able to get rid of the skin fold underneath the set. But I had some concerns about how effective this new site would be as a result. About five hours later, when we arrived at our campsite and I tested Jenna for a snack, my concerns were justified. I can't remember the exact value, but I believe it was well into the twenties. And I knew that this new site was no good. We had to perform another site change, much to Jenna's dismay, check for ketones and do a hefty correction.

One day during our stay, we hiked through two kilometers of temperate rain forest with our girls. While this isn't any great feat for healthy, able-bodied adults, it certainly was a cause of great pride for us when our girls, especially three year old Jenna, hiked the mildly challenging trail on foot for the entire two kilometers. Only at the end of the second kilometer did she mention that her legs were tired and would appreciate a shoulder ride from Daddy back to the truck.

We followed this hike with a stop at Long Beach where Jenna was inspired by this beach's spacious, vastness to run like the wind for nearly a half hour, non-stop. Needless to say, her blood sugar was spot on for the remainder of the day. She even enjoyed a granola bar snack without requiring a bolus!

So, what have I learned from these experiences? Well, I've learned that Jenna needs to be a very willing participant while a site change is being performed on her abdomen. I've learned that time change and sleep deprivation combined with a five hour flight wreak havoc on Jenna's blood sugar, especially when we lose time. Next time I may just up her basals a tad to help keep on top of things. Another valuable lesson; aside from insulin and pumps, exercise is a diabetics best friend. I already knew this. But when I saw it's effects so clearly after a day of intense physical activity, I realized just how truly valuable a tool this is to have in the diabetes tool box.

But I think the most valuable lesson I've learned is that managing Jenna's diabetes doesn't have to slow us down at all. With proper planning and preparation, we can enjoy travelling just like any other family. I've gained a confidence in my own ability to anticipate certain situations and plan accordingly. I know now what I need to do to organize a trip that minimizes stress and maximizes fun! I'm feeling empowered. And I'm sensing the homebody in me is taking a backseat to my adventurous side; the side that wants to experience more of the world with my incredible family.