Monday, 13 May 2013

D-Blog Week: Share & Don't Share

Todays' Topic:
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

In some ways we are lucky.  Our health care team at the Janeway Children's Hospital sees us for about 2 hours every 4 months.  During those 2 hours we see one of the Endos, one of the CDEs, the dietitian, and there is a social worker available too if needed.  They take the time to explain things to us, they do the A1C using blood pricked from your finger using your own lancet, and they have been very helpful.

The problem is that it takes us a 2.5 hour plane ride, and 3 days away from work/school to attend these appointments.  And the communication in between is either by email or phone.

We do have a family physician here in our town (which takes at least a month to get into see) and a local CDE, who is great, but has minimal experience with children (but I'm so thankful for her!)

What would I like them to see?

Well, a plan that looks good on paper, may be difficult to carry out in practice.  It's easy enough to tell me to reduce that basal for the afternoon, but she isn't active at that time everyday and goes high; or to drink an AJ before outdoor lunch in a child who is excited to get outside with her friends and may forget; or any number of scenarios that change on a day-to-day basis. Yes, plans need to be put into place, and settings optimised, but they may not always work.  We try to do what works for us within your suggested framework.

The target range is wide for 6-12 years olds at 4-10mmol/L graduated to the child's age.  Although the guidelines say its okay to be in the 9/10 range for her age, we find her moody, whiny, and having decreased concentration and listening here and above.  We prefer readings lower than this.

Sometimes our food choices are not the best.  But she's a kid.  And she has extracurricular activities to go to. Some days that healthier meal takes a back burner to getting out the door in time for soccer or Sparks.

Yes, we test a lot.  I mean a lot.  Like 13-15 times a day some days.  Yes, we would like to start CGM. We have all the supplies on hand.  We are waiting for the Medtronic rep to train us to start.  Which keeps getting delayed.  It's also not always us parents doing the testing.  Amy tests when she feels like she needs to, and I will never dissuade her from doing so.

Our A1C isn't great.  But we try.  And are hopeful that the pump will help bring us to target.

I would also like them to know how grateful I am that they are partners with us on this journey.  Good medical care and a team effort from caregivers and patients is essential for successful diabetes management. Thank You for always telling us that we are doing a great job.

To our local diabetes team.

I'm grateful that I work at the hospital and have you at my fingertips for times of need.  It does take a long time to get into see the family physician, but he is great for answering my emails or returning calls.  What I would like him to know is how time consuming this disease can be.  When we were applying for the disability tax credit this year, we were asked if we actually spent at least 14 hours per week managing diabetes (not including counting carbs).  

AS IF!!!

If they only knew that as long as Amy was awake, we were somehow managing her.  Some of this management and planning is now automatic, kind if like driving a car, but we are always aware of it.

I don't think there is anything I wouldn't want them to see, unless you count wiping the finger blood off in my nightgown in the middle of the night if there is no tissue around!

1 comment:

  1. Wow, hearing what it takes for you to get to your appointments is a real eye opener and a reminder for me not to take for granted how lucky I am to have so many good doctor so close by. As for the rest, I was nodding along with you - and a giggle about the wiping the blood, I do that too!