Just Another Clinic Day

Just another clinic day which means just another sleepless night before, worrying about clinic day. For me clinic is a evaluation of not only how my kids are doing physically but how I am doing at managing their medical conditions. I worry about the results of the blood work, ultrasounds, X-rays, scans, measurements… did I drop the ball on something?

Like when I took Hailey to the doctor when she was 17 months old with what I thought was a bladder infection only to be sent directly to Sickkids Emerg with a Type 1 Diabetes diagnosis. Or when I took her for her 3 year old physical and was asked what I’m doing about her eye. Turns out she had pretty severe strabismus which led to eye surgery down the road.

Every diabetes clinic I worry her A1C won’t be as good as the last (yes I know in my mind can’t control everything, like illness, growth spurts and hormones that affect blood sugars and don’t always cooperate with our insulin dosing). But also going through my mind is did I not pay enough attention these past couple of months? Did I let too many highs go by because it’s less worrisome then a low – Because selfishly I wanted to sleep a little better so I sent her to bed a little on the high side one too many times?

Then there’s Jessica. Her clinics are intense. Every few months we meet with her whole team and this can be up 12-15 people at once. Her “Team” is made up of her surgeon, G.I physician, 3 nurse practitioners, 2 dieticians, TPN nurse, O.T, P.T, 1-2 fellows and usually a few other randoms. All hovering over her (she actually doesn’t mind this and has been doing this since she born unless we discuss something she doesn’t want to talk about.. she’s pretty much up for the audience). I love this Team, I am indebted to this team and also a bit intimidated by them at times. They are the reason Jess is here today, her feisty sassy little self. I don’t want to fail Jess or them, sometimes it feels like consulting with family members that I don’t want to get in trouble with.

Thanks to Covid, only one parent can attend clinics/tests in person. Up until now we’ve almost done all clinics, tests appointments, together over the past 9 years. I much prefer going with Danny. At least he can Zoom in for the team meeting.

In usual Tolensky family VS our kids health, not all went as expected. We learned that Jess’ bones density has decreased a bit (a complication from being on TPN her whole life) and for some unknown reasons at the moment her liver numbers have spiked. We have had really good liver numbers for the past several years. So the team will make some nutritional changes to her TPN formula, we will try to increase some of her physical activity to strengthen her bones. In a month or so we will redo her blood work and see how her liver numbers look. For now we will just see what tomorrow brings…