What used to be easy now is difficult.

This week Cody has earned the right to do what our son’s school calls an ABC event on Friday. Basically kids with good grades, and some other criteria, get to go to a shopping area about an hour from our house.  Seems like an event he should be able to do.  It’s just shopping and eating lunch at Panera Bread or Chipotle or something like that.  So very harmless. So what is the big deal why can’t he do these things after all he’s just a kid trying to be a kid. 

Therein lies the rub.  So let’s start with the trip to the shopping center.  It’s an area that has a Dave and Busters and a large number of places to shop or eat nothing wrong there.  They will be walking around for several hours.  Doesn’t seem too bad but if he has an issue the school is not required to give him his emergency shot.  This is a school field trip but the RN is not going on the trip.  So even if he carries his emergency pack no one will know how to use it.  So wait I said that wrong he is not allowed to actually carry his shot on him because he is “at a school function”, but the school won’t give it to him if he has an emergency.  The school is required to carry the shot but not actually use it if he needs it.

It’s likely nothing will even happen but what do we do if something does happen?  The shot needs to happen within minutes and the school won’t do anything but call 911.  Not to mention there won’t actually be school chaperones close enough to do anything, they let the kids wander around for several hours basically unmonitored.  It is going to be his 13-year-old friends that will need to make a call if something happens.  

So again do we just risk it, wait for the ambulance to get there and hope they know exactly what to do?  We know they don’t know what to do.  Our own EMS in our own city doesn’t know what to do let alone another city that we aren’t even sure if an AI person even exists in that city.  

So now my wife will take the day off, and to not embarrass my son (since parents don't go), she will just walk around the shopping area away from him and come help him if needed.  I am sure you probably think it is over kill but imagine a diabetic not getting Glucagon in an emergency situation.  Or better yet imagine the school refusing to use an EpiPen if one of their peanut allergy kids came in contact with some nuts and starts going into anaphylactic shock?  So he’s going to that field trip and we will just have to cover him there because the school won't.

There is some legislation that was recently passed in Oregon we are looking at to see if we can get it passed here in the KC area that makes schools have someone on site that knows how to give the shot.  There is so much we want to do and needs to be done   wish I could spend my entire day just doing this to make life easier on families with AI. But for now we will focus on keeping Cody in good hands.

Some of you make be thinking we are being too scared about it all, too cautious.  But my question to you would be what would you do?  I am not saying make that easy call from the cheap seats.  Really think about it.  What if your child had a disease that could kill him on any day at anytime?  Do you think it would change how you look at the world and their life in it?  What if today is the day God decides it is their time?  Did you do everything you could do not only to save him, but to give him a meaningful life?

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.