One of my favorite quotes of the day:
"I'm a New Yorker. New Yorkers tell it straight. I'm not going to tell you the glass is half empty or half full. I'm going to give you a half a glass of water"
I love this because that is my favorite kind of doctor. I want/need straight talk. No sugar coating it for this mama.
The best news of the day was that, upon reviewing Tiernan's cath results and echo again, he understands why Hanley feels compelled to septate.
It was so nice to hear that their opinions are no longer wildly divergent.
Chen did a great job of giving us more questions to ask Hanley. I'm certain he knew that we would not be choosing him over Hanley (remember what I said about the lack of ego) and set about trying to arm us with the best topics of conversation when we speak with Hanley.
The biggest question that had NEVER crossed my mind, was "Is it better to live with a strong single vent physiology, knowing all the longterm effects and lifespan uncertaintly that brings, than to live with a weak 4 chambered heart?
This sort of blew my mind. I guess I had just thought that IF septation were possible and done and it worked then it just....worked. Simplistic, I know. But honestly, it never occurred to me that if a septation were to work, even if his heart were a little weaker than most because of the surgeries etc...., that it would automatically be SO FAR superior to a single vent heart. But maybe there ARE significant longterm issues that would come from this that are WORSE than those that accompany the Fontan.
Oy.
So that is going to be a main topic of conversation between Hanley, Jason and me.
The other most important thing Chen said to us was that, at the end of the day, we have to choose the path that is going to allow us to sleep 10 years down the road. Regardless of the outcome. We need to be at peace with our decision to septate, knowing fully the implications, and feel good about that. Rather than choosing the Fontan ("safer?!" route) and loosing sleep 10 years from now WISHING we had tried to septate. Or, if we choose the riskier septation and things go horribly wrong. Well, sleep will be lost no matter what, but if we choose this we have to be sure in our hearts and minds and souls that it is/was the best choice.
Again. Oy.
So, we have, as usual, more questions than solid answers. But I think we can say for sure that we WILL be going to Lucille Packard at Stanford and this will be a remarkable journey, to say the least.
Now, since you've read all that, I have to share a great story from the other day.
Recently, Tiernan has mentioned he wants to be a doctor. (I think this says a lot about the awesomeness of HIS doctors).
So our conversation yesterday turned to shots. It went like this.
T: So doctors give the shots.
M: Well, usually that is the nurse.
T: But most of the time the doctors give the shots.
M: Actually, no. Mostly the nurses do that.
T: But some of the time the doctors give shots.
M: Well...occasionally, yes. A doctor gives a shot. But almost always, it's the nurses.
T: Well, the doctor takes the blood pressures.
M: Um. No. Typically that is also the nurse's job.
T: But SOMETIMES the doctor does it, right?
M: Mmmm, yes. maybe sometimes.
T: <triumphantly> But the doctor takes the TEMPERATURE!
M: Eh, no. Usually the nurses.
T: <exasperated> WHY do the nurses get to do EVERYTHING?!!!!!
HAHAHAHAHAHAHAH.
I hope my nurse friends read this because they will truly appreciate it.
And finally, because a blog post would be horribly incomplete without some photos:
2 weeks ago we went to Legos Kidsfest in Portland. Grandma even came along. We rode the MAX (light rail) which was maybe Tiernan's favorite part. We stayed at a hotel, and spent HOURS amongst an unbelievable amount of Legos.
One of my favorite parts were the ginormous Lego characters. By which I mean, they are built ENTIRELY from Legos.
We will likely "meet" Dr. Hanley via phone conference on November 13th. Much more to come.
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