The backstory and the main man

Today I thought I would give Elliott a break from the limelight (his bowel did wake up in the end, with some help, and we have had a little spike in blood pressure tonight, so we have started with some blood pressure meds for the first time since the surgery, which has brought it back down again, so we shall see what the nephrologists want to do in the morning). I thought I would share a thought about the reason why we are in Ann Arbor, MI, in the first place, and a little of our backstory.

One of the toughest things about caring for a sick child is not knowing where the road is going to take you. When Elliott was admitted into Rady Children's Hospital, in San Diego, with a frighteningly high blood pressure, we already knew that he had an enlarged and thickened heart due to most likely years of high BP. What we didn't know is that the aneurysm and stenosis that they eventually found in his kidney made his case particularly rare, and that finding a doctor to treat it would not be straightforward. After two weeks, we left Rady Children's with three BP meds for Elliott and a whole host of options for treatment. Monica spearheaded an effort to make contact with around 18 doctors across the US, each of whom offered their own particular and sometimes contradictory (to others views) perspective as to which way forward we should pursue. Unlike the maps that have become part and parcel of our lives here on the inside, during our hospital stay at Mott Children's, Ann Arbor, navigating the world of sub-sub-specialty medicine is something we had to do without the benefit of a good number of previous cases to provide much in the way of solid data.

 In the end, Dr. James Stanley, the Director of the Cardio-Vascular Center at U Mich Hospital, was the one person in America whom everyone else pointed to as someone who had the experience to repair Elliott's artery. Apparently, there are around 800,000 doctors in America. 800,000 and this is the one guy who can do it. Now, I know that a whole lot of those docs do a lot of different things, but it is a curious thing to contemplate that there is one man out there of 800,000 who is recognized as being the only one who might perform the sort of restorative surgery that we desired.

So, today, Dr. Stanley made a visit to Elliott's bedside. You should appreciate that Elliott sees somewhere between 20-30 medical professionals a day (it was worse in the ICU) so another doctor standing in my peripheral vision was not exactly a novelty. Yet, when I realized that it was Dr. Stanley, the Dr. Stanley, it was all I could do to stand to my feet and appear alert and composed. It is not at all that Dr. Stanley is somehow overbearing or demanding of others attention, it is that when he stood before me, I felt like the Headmaster had just walked into the room, the sort of Headmaster who gets your attention just by showing up.

In the end, it doesn't matter if Dr. Stanley were one in 800,000 or one in 8, he is still the man who repaired Elliott's kidney, which in the end we hope might mean that Elliott can go on to live the kind of healthy and happy life that most four-year-olds in his fortunate position in America get to do. Cicero was supposed to have said this, 'In nothing do men more nearly approach the gods than in giving health to men'. I probably wouldn't go that far, but you, Dr. Stanley, are definitely a hero in our household.