Flow Charts and Graphs.

Fresh from the doctor’s office I feel prepared to slay the world.  It is amazing how I feel every time we get to talk to our doctor.   We are so blessed to have a guy willing to talk through all our questions and help us soothe our fears.  He has armed us with what I hope to be a better plan to allow him to live as a normal child.  There’s that word again, normal.  It’s as normal as we can hope for.

This visit was a good visit.  He answered a lot of questions but again opened up new avenues of doubt and worry.  He took some more tests and I am not sure exactly what I want to learn from them but we shall see what new things they find, if any.  Needless to say we are waited for that phone call on Monday to see if there is yet another thing we need to worry about.  The doctor suspects his thyroid levels may also be off.  If this is the case this may be part of the reason he is having so many issues recovering. 

We got the results back and he is within range on everything.  The questions marks are the fact that his T3 Levels for this Thyroid were toward the upper end and his Thyroid stimulating hormone were also on the elevated end, but again within range.   So this could point to mild hyperthyroidism.  Too much thyroid hormone; sometimes called "overactive thyroid;" acceleration of body functions; symptoms include increased heart rate, anxiety, weight loss, difficulty sleeping, weakness, and sometimes diarrhea. There may be puffiness around the eyes, and, in some cases, bulging of the eyes.   Oh goodie more symptoms to match the symptoms of his current disease.  As of right now he is actually within range, though at the higher end, so the doctor is going to monitor and watch for a change in his numbers.  According to the doctor with currently 2 pituitary diseases there may come more as we treat the ones we know about.  He is concerned that with his body taxed from the low cortisol he may also be having trouble recovering because he may have mild hyperthyroidism.  We will see…Yay for hyperthyroidism.  Darn it there is that sarcasm again.

OK so back to the plan for our attempt at a normal childhood.  If it would stop raining maybe, we could test it.  Baseball has been rained out several times since our last doctor’s visit.   We have a plan to dose him more the day before and during and see how he reacts this time.  Being a computer programmer by trade I am kind of a black and white type of guy.  I want to flow chart this stuff out.  The problem is it would probably look like this image.   The fact is we really have to guess. 

The more people I talk the more I feel like people just don’t get it.  People don’t understand what the big deal is and why he needs to be monitored so closely.  Frankly, they shouldn’t get it because this disease is so rare.

So let me try to explain it.  Imagine getting in your car to drive somewhere.  Imagine you had no gas gauge, no idea how many miles to the gallon you get, and no idea how much gas the tank holds.  On a normal day 12.5 gallons of gas will get you through the day.  But you don’t get all 12.5 gallons every morning but rather 7.5 in the morning and 5 gallons in the afternoon.   You plan to drive to work on just like every day.  No traffic no issues you can get to and from work, school, errands, kids events, and a few other things on that 12.5 gallons gets you through the day just fine.  That is your normal day.  Now what happens if you get stuck in traffic?   Your car burns twice as much gas normal, but again you didn’t know there was traffic today.  So now you have to stop and fill up again.  How long is that traffic going to last?  What happens if you get a flat tire while in that traffic?  Your car may now need more help.  See what we don’t know is when is that traffic going to back up.  When will there be an accident or a flat tire.  When will the car have other issues.   What if you need to go on a long trip how will that affect the car?  Oh did I mention that when you start everyday your tank is empty and needs to be filled before you can do anything.  If you didn’t drive it today you still needed to fill it but it’s empty again because just sitting in the garage or driveway it is burning gas.  It's burning gas while in the parking lot at work.  It's burning gas while you get the kids to their sporting or school events.  It's burning extra gas every time someone cuts you off or in the rain because it might be harder to drive in the rain.  On any given day you can run out of gas at anytime because you don't know how much you are burning and when you might need more.

This is how Cody body works.  We have to get him his 12.5 gallons of gas every day and hope there is no traffic.  In most cases we have to prepare his week as if we know there is an accident that is going to happen tomorrow.  If he has a big test, we have to dose him.  If he has baseball, we have to dose him higher.  If he has a tournament we may have to go even higher.  The hardest part is not knowing what is going to set him back.  Will a teacher "disciplining" her class because they are talking too much stress him out?  What about getting in front of his class to do a presentation?  Then there is the other end,  What happens if he goes to a friends house for a sleepover and they stay up to 1 AM playing?  All these are things that have caused him to go low and only a few of them we can predict.  The doctor swears he has AI patients that play competitive sports and live relatively normal lives; I just hope we can get there too.  

Only time will tell.