Wednesday, December 10

Doctors are cool. Technology is cool. Can we all be friends again?

I feel really bad when doctors make mistakes - whether it's just a plain ol' fashioned lack of competency or understanding, or a lack of being proactive and simply not gauging the severity of a situation. I feel bad for them because there are very few professions in which mistake = death. I have made many mistakes while teaching. I once made a mistake while writing a final exam, using the wrong chemical formula for acetic acid. Did anyone die? Unless one of my students went on to open a chain of vinegar restaurants, I'm pretty sure my mistake was harmless. (I just googled "chain of vinegar restaurants" just to make sure. Yep, we're good)

Branko's situation was (and is) a bit of a mystery. Since he's the only person in the world with this genetic condition, it's actually pretty easy to rationalize any mistakes with, "hey, they just didn't know." There were some difficult times, prior to when the doctors fully understood what was happening inside his body, but I like to think of these scary moments as necessary steps in order to receive the high level of care Branko is receiving now.*

There is one particular test that has driven us BANANAS. It's called a sleep study. It's actually a very interesting procedure, one that takes about 10 hours overnight in a hospital room. In a nutshell, hundreds of probes, stickers, and knick-knacks are placed all over the body. In theory, your kid goes to sleep (HAHAHAHAH) and a technician collects data. This procedure is used to diagnose sleep apnea and to specify any overnight oxygen requirements. Lastly, the procedure is able to record overnight carbon dioxide patterns. This is where Branko's problem lies.

Branko has chronically high carbon dioxide levels (hypercapnia), which can have some pretty nasty effects. (If you, dear reader, did your homework and made it through this info, please read on. If not, go back and get caught up and please don't let me catch you slacking off again.)

The tricky part about hypercapnia is getting accurate data for a diagnosis. There really isn't a fast and accurate test to measure carbon dioxide in the blood. The more commonly used, but inconvenient and inaccurate method is called a "cap gas", and involves filling a long skinny tube (capillary) with blood via a toe poke. This is usually how it all goes down with Branko:

1) Toe is poked, no big deal, but it takes forever to fill the tube. Branko screams.
2) Because he is a squirmy, sweaty boy who hates having himself pricked for blood (LIKE EVERYONE IN THE WORLD) the test takes even longer than usual. Branko screams.
3) Because the test took so long, blood has clotted and the sample is useless. Branko is still screaming. Pass him a Kinder Egg while attempting to avoid looking nurse in the eye.

Let's recap this cap gas business: pricked toe, blood all over the room, child has an anxiety attack. I haven't mentioned the best part: THE TEST HAS TO BE PERFORMED AT 6 AM. Guess what happens if he's still sleeping and you kindly ask the nurse to come back later? TOO BAD I'M A NURSE WITH MILLIONS OF TOES TO PRICK TODAY.

The problem with Branko's condition is that he didn't actually have a sleep study until nearly five months after he started to show symptoms of extreme respiratory distress. A sleep study in Ontario involves about an 18 month waiting list. To put this into perspective, Branko had a cardiac arrest, and he still wasn't considered a priority candidate for a sleep study. It took another episode of lung failure a few months later before a doctor finally said 'I think we need to get him in for a sleep study.'

It was only after the sleep study was performed that doctors were able to get a clear and accurate picture of how his carbon dioxide levels were fluctuating overnight (kindly measured using a painless method, instead of a toe poke). After this, his level of care changed. He was able to go on BiPAP, and more importantly, his care was taken over by a brand new team of doctors. This new team is amazing. In addition to being great doctors, there were no shoulder pads in sight, and they all immediately noticed the vintage Michael Jackson doll by Branko's bedside. (Phew).

A doctor is only as good as the resources made available to them. Yes, Branko sometimes has clear lungs, something that can easily be confirmed with a stethoscope. But his more serious, underlying condition is very tricky to diagnose. It took a great deal of fancy technology and resources in order for him to get the care he needs. And unless I have any good ideas on how to improve fancy medical technology, I'm going to shut up entirely about doctors**.

*Thank you, Ontario Health Insurance Plan. Are we cool? Please don't be mad at me. 
**Well, maybe not exactly 'entirely.' But I will definitely make a pretty decent attempt. At least for today.

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