Wednesday, April 28, 2010

I love my team

D-day/week was an incredibly sad and stressful time full of horribleness, but at the same time one of the most wonderful things in the last 8 months happened - we met our D-team.

The doctor who delivered the news to us in those early morning hours became Jonathan's paediatrician.  Admittedly not an endocrinologist but works directly with a few, she is one of the most well respected diabetes-focused paediatricians in the area, very knowledgeable and experienced in paediatric Type 1 Diabetes cases.  Jonathan absolutely loves her and despite a hefty case-load, she always takes the time to review anything we need to and help mentor us in our care of Jonathan.  During our stay at the hospital, she was in to see us every day, sometimes several times a day.  I walked the halls at all hours and more often than not she was there, to the point that I was starting to wonder if she lived there.  He was discharged just before a holiday weekend when the clinic would be closed for 3 days, so she gave us a number where she could be paged.

There are three RNs in the clinic that are all immeasurably valuable.  M is a Certified Diabetes Educator and was the one who started us on our in-hospital crash-course and the one that I ultimately look to, to vet any changes or advice that I'm not 100% sure of.  D1 and D2 (no pun or joke indented, but both their initials are D, so… I'm goin' with it in the order that I met them) are my other two go-to gals.

My weekly calls are usually with D2 who is also a CDE.  We review Jonathan's numbers from the last week or so, discuss my analysis and what I plan to do, and she helps by looking for causes of out-of-range numbers, offering suggestions for improved management, and finally we agree on dose changes if any.  D1 was also involved in our initial classes at the hospital with M, in fact she was the first person I ever put a needle into (BRAVE WOMAN!).  Now, I don't know if she was just trying to be nice or not, but after I removed the needle on a silent 10 count she told me to go for it as if I hadn't even inserted it yet.  Yes, she let me stick a needle in her... Now that's going the extra mile!

I'm on the phone with D2, D1 or M at usually once a week, even if it's just for a quick chat about the status quo, or if need be we've talked for upwards of 45 minutes going over any number of D related topics (I monopolize way to much of their time, but they are so great about it.  They always make me feel like I'm the most important call of the day).

We now visit quarterly for an A1c check, weight, height and blood-pressure checks, and a review with Doctor.  This is regular maintenance.  If the need were to arise, we would still follow normal protocol in response to situational urgency: appointment with doctor at her office, visit to clinic, or trip to ER, whatever the circumstances dictate.

Jonathan had barely finished his first post-diagnosis meal when we were first visited by a dietician.  She spent a lot of time with us reviewing how to read nutritional labels, gauge fresh food's size to estimate carbs, how to use the national food guide, assembling healthy well-balanced meals (that all kids should have), and how to add up all those carbs and subtract the fibre so that we can have the food side of the insulin ratio figured out.  She was also the one that turned us on to the Salter scale that we love so much.  From time to time, as we have questions about food and how what we put in his mouth is metabolized, we call her to get help figuring out why some of the "wonky" things that happen come up.  Guess what - she a CDE on top of being a Registered Dietician.

In addition to the medical team, we also have access to other support areas.  A social worker visited us during our first week to discuss financial support opportunities (we have insurance so this didn't really apply), government grants/tax credits, etc. and I touched base with her a few times while I was getting some of those set up.  For Jonathan, a Children's Life Services team member came in to talk with him, have some play time, and also do some children's level Diabetes education.  When we visit the clinic, Jonathan still has access to the supervised play area (if our appointment is within the hours of operation).  He enjoys visiting the clinic and looks forward to everything from the magic stairs (escalator), visiting with the clinic team, having Doctor check him out, and chillin' in the play area.  The team even initiated contact with other organizations outside of the hospital for us.

From my point of view, diabetes management is a team effort.  The team may change over the years and the level of interaction between the home team* and others may fluctuate, but it's not, and never will be, a one person show.  I could not imagine life without this team.  I'd probably be back at the hospital, in the mental ward.  Although we've learned a lot, and are now fairly self sufficient with managing the D ourselves, there is so much reassurance and comfort that comes with having this awesome team of professionals by our side through all of this.  I am eternally grateful to them and I could never thank them enough for all they do to help keep Jonathan a healthy, safe and happy 4 year old kid - because first and foremost, that's what he is; he just happens to have Diabetes.

*Home team: There are a few other key individuals on the team who I did not write about today.  Mom and sister also have important roles in this.  I have pretty much assumed the lead on this and manage most of the planning, communication and dosing, but my wife also takes an active role, in fact she administers more injections than I do, she flies solo when I have to travel and she does more of the meal planning.  Our daughter is one of Jonathan's big supporters too.  She tries to comfort him when he's weary of the pokes and shots, and she does her best to understand the impact that this has on all of us and be a team player.  You can also read about two other key team members in my April 25th post.

We are incredibly lucky and truly blessed to have such a great team!

Monday, April 26, 2010

The Kit

I thought I'd share this tonight in the hopes that someone finds it useful.

I am many things, it's a long list - and I chuckle now because as I break out into making my point about being lazy, I don't really feel like typing that whole list.  In fact, sometimes I am so adverse to doing things that are complicated or time consuming that I will take what ends up being the longer way around in a futile attempt to avoid the right way.

I like making everything as easy as possible.  Now, I'm not saying that everyone that simplifies and organizes is lazy, that's just me.  Nevertheless, one of the benefits of me trying to find the easy way out, is that I tend to compartmentalize things into groups or categories.  Believe it or not, after spending more than three decades trying to avoid putting the effort into staying on top of things, I ended up doing it anyways because it's just easier.

I know a lot of people have there own variation of this, but here's mine:

"The Kit"

The plastic box (manufactured by Plano U.S.A., model 3650), holds enough supplies for about a week.

The only modification I had to make, other than placing the movable partitions, was to the fixed partition between his NovoRapid pen and the tube of cake decorating paste - I had to cut a notch for that narrow part at the top of the cap.

The black case in the large spot on the right is the pouch holding his Aviva Nano meter, test strips and lancet pen from Accu-Check (the case comes with it).  I added to the case a pen, piece of paper, and some alcohol wipes.  If we're just running to the corner store, or to the park down the street for a quick play time I only take that black pouch with the icing gel stuffed into it (it's a tight squeeze, but it does fit).  There's a 15g-carb bag of Skittles underneath that gel too - it's been there since day one, but now I have candy stashed all over God's green earth.

On the left side at the top are his 30 unit syringes (graduated in 1/2 units) for his Lantus (the lavender topped vial just beside the syringes) and next to the Lantus are the pen tips for his NovoRapid Pen (bottom left).  In between the needles and insulins are some alcohol wipes, BD lancets (in case his Accu-Check lancet get jammed, which hasn't happened yet) and some Accu-Check lancet drums.  This complete kit comes with us when we're out for a longer trip and/or a meal of easily calculated carbs.

For more complicated meals, or longer trips, we bring along his Salter Nutri-weigh scale, the universal power adapter we picked up at Best Buy, more alcohol wipes in that little baggie, 4 "AA" batteries (in the round container on the top-right) in case we can't find an outlet, and a little container for sharps.  The black laptop case, like the power adapter, was purchased separately, on the cheap, in the office supply aisle at, of all places, the grocery store.

There's a handy pocket on the inside of the lid of the case that hold the 8 1/2 x 11" booklet I record all his data in.

"The Kit" slides perfectly into the outer pocket with just enough space to actually close that flap.

To anyone else, it would just seem that I am some geek that can't bear to part with his trusty little net-book, but inside I have pretty much everything I need for an average day (or week) with Jonathan.

I also have a larger back-pack that this case can fit into and also carry his binders with the first Diabetes books we got, symptom cheat sheets, Keto-sticks, and pretty much everything else, short of an endocrinologist.

In under two minutes I can have what I need, in my hands, ready to fly out the door, easy peasy lemon squeezy as someone once said.  I like easy.  I would have married easy.  Easy is my kind of way!

One more thing: I openly and honestly admit that all of this is because we have not yet chosen to go to a pump.  I know the pump will obsolete much of "the kit", but until that day comes....

Sunday, April 25, 2010

I'm a D-Dad, but I'm still a husband too

When our daughter was born, I faced a bit of a dilemma.  We had a new responsibility in our lives and it was all ours.  We had a beautiful baby girl and we were parents for the first time.  I wanted to make sure that I give it 110% because this little girl deserves nothing less, but at the same time I wasn't about to leave my wife to become a dad.

Now it probably goes without saying, but the first few weeks were total chaos and fatigue.  After the dust settled and we adjusted to a home of three, we became distinctly aware that we had set aside many things between the two of us; necessary, but difficult.  Like many parents, we finally got used to the idea of temporarily handing that responsibility off to someone else, be it a family member or a hired sitter.  When our son was born and we got a home of four in order it was the same deal with the same drive and the same insanity, but it was old hat and we didn't really have to put so much worry into it.

Then, and we all know the day, D-Day.  This was totally different than becoming a parent.  This redefined our roles to D-parents.  We were no longer just progenitors, we became an integral part of his life-sustaining internal physiology.  It was as if the preverbal umbilical cord had been reattached.

I made a promise to my son the day he was diagnosed.  Still sad, in shock, and having really no idea of what was to come or how we'd handle it, I promised him that no matter what the costs to me, I would do everything in my power to make sure that this monster would not take a thing from him.  Going up against school systems and municipal & provincial governments, staying up late and having an alarm clock go off hourly if need be, spending hours compiling and analyzing data, I didn't care I'd do it every day.  That's a pretty hefty promise, I know, but my kids mean everything to me and I would do anything for them - and yes that is an extreme example and it's not like that all the time, but it does happen often.

After a little while the dust started to settle and a few months in we found ourselves a little groove.  The "new normal" we had been promised was emerging and things were seeming alright on the D front and while Jonathan and his sister were, are, and will be priority #1, there are other important areas in our lives that need attention and that's were there's some balancing to do.
We lucked out in two ways.  The young girl, now young woman, that has been babysitting for us these past 5 years is now a second year university student studying biology and she is perfectly comfortable testing Jonathan's blood sugar, will text us the number and follow our snacking instructions (if any) to the letter.  Also my mother, bless her panicky heart, has been brave enough to resume weekend sleep-overs with the kids.  She was just as much a wreck about the risks and management of this as I was at first, but with one distinct disadvantage - in 8 months she has a cumulative total of about 5 days of hands on solo experience.  

Nevertheless, she handles it like a champ.
With these D-fenders on our team, we've been fortunate enough to take some opportunities again to focus on matters unrelated to being parents.  I like to read about practical matters, relevance here - relationships.  Pretty much any "relationship expert" worth their salt will tell you that you can't forsake a marriage to become a parent and I'm finally relieved and pleased to say that with some hard work and patience we've gotten so far as to stretch that cord to allow us 24 hours with no necessary contact (I still called twice to check up, yes, but everything was perfectly fine) to hop the boarder and go to one of our favourite restaurants followed by a late late night at a club, sleeping in, and breakfast at 10am.

The "new normal" is more like the "old normal" than before.

Footnote:  As I've mentioned before, my writing is partially to help me get things straight in my head, but I choose to share a lot of it because I hope that some people will find it interesting and maybe helpful.  There are a lot of seasoned veterans out there that have probably been through this and I'm thankful to them for sharing their experiences so that I can learn from them, and there are some people that may be newer to this than we are and perhaps one of them will find some things that let them know it will get better or serve as a heads up as they get into their new normal.