Friday, September 18, 2015

Life Support

I have two sons.  They both are on life support.  Without insulin shots they would die.  With too much insulin they could die.  It's a balance.

I learned recently that a teenage T1D girl died in the hospital.  The doctors and nurses thought they had her stabilized.  She had arrived in DKA, which can happen at anytime, due to high blood sugars and not taking her insulin.  She passed away from a seizure while talking and laughing with her family.  In a hospital.  Surrounded by nurses and doctors.

When I used to think of life support before Type 1 entered our lives I'd see images like my Great Grandmother, in the hospital hooked up to machines.  Tubes and wires everywhere.  Tools to keep her alive.

Type 1s have tubes, and wires, and machines to keep them alive.  My boys right now "only" have a continuous glucose monitor, Dexcom, attached to their body, but our family jokingly refers to it as going cyborg.  One might try to say it's not really necessary for the life support, but they would be wrong.  In the past couple of weeks it has saved us from using glucagon at least three times, two on the oldest and once for the youngest.  It is a game changer.

At the endocronologist appointment yesterday we got to download the data with the boys doctor.  The CGM is helping.  Both boys had good A1cs.  Drago's stayed the same even though he has been pretty sick the last few weeks.  And Sugar Bear's went down!

Both boys had to have labs drawn.  Sugar Bear's lab was to check his thyroid levels.  The good news is he is fine!  His levels came back to normal.  But the Endo did tell us about 30% of T1s end up with thyroid disease.  We'll keep monitoring.  Drago's lab was for celiac.  He's been having a lot of issues that point to a gastro issue.  We don't have the results back on that yet.

My emotions have been all over the place.  I definitely need a recharge, but it's not easy to do.

I'm just grateful every moment of every day for life support.











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