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by GiorgioG 3458 days ago
> Go ahead an multiply the stress of the above by a factor of 10 if your new kid has serious health issues.

3 years ago our then-19 month old was diagnosed with type-1 diabetes - and we haven't had a decent night's rest since. For anyone not aware, type 1 diabetes is a condition where your body stops producing insulin and as a result unable to process carbs into energy. This is not type-2 diabetes that is a result of not taking care of yourself.

Our son could die in the middle of the night from his body not having enough glucose in his system and as a result starving his brain of the energy it requires - ('dead in bed syndrome.') We're up at least 3-4 times in the middle of the night to make sure he's OK.

As a software developer I've been fortunate enough to be able to "afford" the best insurance ($20,000/year (our share) + more than 3-4k/year in out of pocket costs) which affords us the latest and greatest technology - insulin pump with integrated glucose monitor. The tech is ancient by my standards, relative unreliable (his glucose monitor can get a 'weak signal' for seemingly no reason and as a result could fail to report potentially fatal blood glucose levels.

In an ideal world the tech would be more reliable, better connected, services to monitor his blood glucose levels 24/7 would alert us by phone/emergency services/etc when at critical levels.

The stress levels are high because we never have a moment 'off.' In effect we are human, manual versions of a thermostat for his glucose levels. If it's too high he faces the long term consequences of diabetes (loss of vision, neuropathy, etc.) If it's too low he can die.

Next year the stress gets even worse - we have to trust that the school system will be able to manage his diabetes. Up until now he's always with my wife or myself, 24/7 (and occasionally with my parents, who can keep an eye on him for a couple of hours with text messaging as a 'support system' as needed.)

Needless to say there are situations that are much worse than ours, and we're thankful to be able to take care of our son in the interim until technology catches up to make his situation more manageable for him as an adult.

The stress and sleep deprivation have certainly taken their toll. Weight gain, short term memory, etc.

1 comments

Your insurance premium is $20k/year plus $4k/year copay? That would for me probably be a reason to try and emigrate to a country with good public healthcare. As a programmer youll likely earn a bit less outside the US but with this cost your cash in hand and quality of life would probably still improve. A place like Berlin or London would probably make you happy with as little as possible adaptation pain.

Good luck with your son. On the positive side hopefully trusting the school system can at least give you some time off of this stress :-/