Coming Home and a Big Challenge Ahead

Graham Update Day 83

Graham continues to make great progress in his therapy.  He's doing so well, in fact, that we finally have a discharge date.  We also have a very big challenge ahead of us as we try to manage his diabetes insipidus, a condition that he will likely have for the rest of his life as a result of his accident.  I'll try to explain the cause of it, as well as the unique challenge that Graham faces.

First, the big news: Graham is coming home next Friday!!  Yes, on September 5, 2014, just 88 days after getting his head run over by an SUV, we will finally be able to bring Graham home.  Graham asks everyday if we can go home, and we certainly share his anxiousness.  It has been so long since we have been at home as a family.  We long to hear them laugh, play, fight, and argue.  We'll take the good with bad, just as long as we are together.  It has been such a long journey, and in recent weeks it has been particularly wearisome.  And while Graham's homecoming is exciting, it does pose a VERY UNIQUE challenge...

Central diabetes insipidus only affects 1 in 33,000 people in the United States.  For those math majors out there, that means there are less than 10,000 people in the country who have Graham's disease.  Assuming the averages hold, there would be less than 250 in DFW with the condition, and less than 50 in the entire state of Idaho.  So yeah, it's RARE.

The hypothalamus produces a hormone called vasopressin.  That hormone is then stored in and released by the pituitary gland, and is used to help the body know when to pee.  Graham's hypothalamus was damaged, and he no longer produces the hormone.  That means without medication (or when his medication wears off), he "breaks through" and dumps urine at an alarming rate.  When he pees so frequently, the fluids in his body become more saturated, causing his sodium to get high.  Unchecked, it would get dangerously high.

Most people with diabetes insipidus could actually manage without any medication at all, although the non-stop peeing would get old.  As their fluids drop and their sodium rises, they would get REALLY thirsty and drink.  The problem for Graham is of the fewer than  10,000 Americans with the disease, he is one of the very few who does not have a working thirst mechanism.  So when Graham gets to a point where you or I would just about be willing to drink our own urine, Graham just carries on, not feeling any thirst at all. 

In a hospital setting they can check his sodium twice a day and adjust his dose accordingly.  At home, we don't have that option.  There is a company called Abbot that makes a home sodium meter called that iStat, similar to a blood sugar meter that diabetics use.  There problem is they have only made 50, all the meters are in use, there is a waiting list to use them, and they are no longer accepting people on the waiting list.  Furthermore, the machine is not FDA approved, which means they cannot mass-produce it.  And, likely due to the fact that less than 10,000 people in the country have diabetes insipidus, they don't even have plans to get the machine FDA approved or ever mass produce it.  So unless someone knows the CEO of Abbot or has another way to check Graham's sodium level at home, we will be playing a very critical guessing game for years to come.

And it is a guessing game, by the way.  They have literally changed the dose of Graham's medication at least twice per week for the last 2 months to try to get it in the right place.  They have gone from shots to tablets.  From giving doses twice a day to giving doses three times a day.  No matter what they do, he always needs a different dose.  In a normal patient it's not too big of an issue - when they dump urine at home - give them a dose and have them drink till they are not thirsty anymore.  But Graham does not thirst.  So the only thing we can do is measure all his fluid output and try our best to replace it everyday and hope that he has enough fluid.  But not TOO much - if we overmedicate Graham he will retain too much water and his sodium can also go the other way and get dangerously low.

So managing Graham's condition will be challenging.  But we are hopeful that in the coming week his doctors will equip us with some tools to help us keep it in check.  And in the grand scheme of things, if this is the biggest challenge we face as a result of Graham's accident - sign me up!  His recovery is nothing short of a miracle, and we are so excited for upcoming milestone.  Thank you all for all your prayers - we know the road would have been much tougher, if impossible, with them.