My son is finally back to school after missing much of last year. After hiring a tutor to prepare him for grade three, we were poorer, but pretty jazzed about getting him into a busy life again. Sadly, two weeks into the school year he has been forced to change classes, and teachers along with the rest of the school in a ridiculously ill-timed shift. We have battled anxiety, sugar highs and lows, ketones in urine and all night vigils testing blood, urine and administering 10% of total daily insulin dose just to try to work out a safe space for him at his school so that we could have two incomes - in part to afford his diabetic supplies and our daughter's medication - we maxed-out our privately paid for health insurance long ago for the year. I haven't a bloody clue how we will be able to pay $8000 for an insulin pump next year to ease our son's life.
What I am finding is scary. We planned and planned for this fall, but so much is being undone and hurting us in every way possible. We have had as many meetings, notes, emails, phone calls as we could to ensure a smooth and safe entry to grade three for our son. We finally arranged for a nurse (we found out at first that three nurses handle his daily lunch doses - then found out today that it is actually five). So much more room for errors in my mind if so many people are handling one case. There isn't even a contact number for each nurse - we were only given one nurse's extension number to call.
The lunch insulin for my son is delivered by 5 nurses through an agency hired by the Upper Grand Board of Education, I believe. I left a voicemail, as I have had to do before, for one of the nurses to communicate to the others yesterday about a change in my son's insulin units due to chronic blood sugar highs at school. I also wrote a prominent note in the designated communication notebook for the nurse attending yesterday.
What ensued was mind boggling. I was called at work by a nurse who had not received either message and actually questioned whether or not I had paperwork from my son's diabetes doctor to verify the insulin change. I was patient on the phone - partly so that she didn't turn Nurse Cratchet on my son and party because I was at work where all could hear my end of the conversation - but I really must wonder how I am supposed to react with calm when, repeatedly, I am faced with people who are just doing a job - not really engaged.
Should the nurse whose voicemail specifies that Tuesday is one of her days of work be blamed for not passing on the message when asked to do so? Should the attending nurse who should have read the pre-established vehicle for communication, i.e. the notebook, be held culpable? Today's nurse had to be prodded to give my son the extra two units of insulin after I told her to read the note and she questioned my authority. I mean C'MON!!!!
I am furious, worried, worn out and cannot help but think that a school that was instrumental in colluding with the Upper Grand District School Board Council and working against T1D students in Guelph gaining the same life-saving (Glucagon) privileges as children who require Epi-Pens at school - is no place for my son. Even the nurse who is on our team at the hospital is stretched too thinly to train my son's teacher who is new to my son's school. I feel as though all of the supports that we have hobbled together to help my children stay alive and healthy are so tenuous and thready that I wonder if it is a mistake to entrust their care to virtual strangers who, in some cases, may just be killing time until the end of the day or are so stretched in terms of resources they are limited or burnt out at their jobs. In the end it is about trust. Ultimately, I trusted that people in professions where children's lives were at stake would be motivated to ensure that all the details were sorted - following-up established communication routines. Over and over I hear about how a form that we filled out in good faith did not go to its destination until too late or someone is away at a conference - this adds up and forms a pattern that gives an impression that in reality many of these professionals are actually not doing their jobs very well and that they have their "careers" rather than their "calling" to nurture. Emails that were to be forwarded to the caregivers closest to my son were not forwarded...
Kudos to all that have gone the extra mile, I hope that I have shown my heartfelt appreciation. To the others - all I can say is that I am so very tired, worried and disappointed.
No comments:
Post a Comment