MRI time

Today is the day we find out if the bi-vent is officially a go.

We are here at our favourite place...Mary Bridge Children's.
AND we get to have the most a-MAH-zing nurse, Lori!  For those who don't know who she is, here's the scoop:
When we brought Tiernan into the Good Samaritan ER at 9 days old, we were obviously frantic and confused. Lori was the transport nurse who came from MB and she has had,from the start, an uncanny ability to make me calm down. I knew she was incredibly good at her job and I had just met her. Anyhow, she was part of those chaotic first moments and she also transported us up to Seattle Children's when that move became necessary. We discovered, as we rode up to SC in the ambulance, that she is friends with Dana, my heart mama friend who I have worked with at NVI since 2003. And then Lori was again one of our favourites during our 9 week stay for his DKS/Glenn and all the frightening moments that came our way throughout. Anyway, the bottom line is that Lori knows Tiernan as well as anyone here and her presence in this day is truly an unexpected gift.

 MB has  two wonderful peds cardiac anesthesiologists. Dr. Lord (who did the DKS/Glenn and loads of other stuff, and Dr. Borman who has taken care of hi on several occasions as well, including his g tube stoma closure. Dr. B has him today. They are both so kind and gentle and again, I feel much more at ease knowing he is in charge.
Because this MRI is kind of a big deal, he decided to do a breathing tube to give him better control of his airway. They always give a bit of versed (calming med) and then the mask to put T under before they do the IV. So thankful they don't do the pokes when he's awake.
Tiernan was so pleasant and his usual charming self right up until the moment stuff got real.
As they were getting set to do all this, T got wise to their plans and he was NOT impressed.
I had a moment where I started to worry that he was going to pass out because he was starting to hold his breath. His breathing was labored and I got nervous, until it hit me that Dr. B was p r o b a b l y well in control of the situation. Lol

In the meantime, this sitting and waiting is not doing much to make me eager for this upcoming hospitalization. In fact, I'm pretty much dreading it. But we will take it one step at a time, as usual.

MRI lasted around 2 hours and he did great. He took awhile to come out of the versed/propofol fog but we are getting ready to head on out. Hopefully we will hear some good news soon!

Thanks for all your support and prayers!

Ode to Joy

This is one of Tiernan's favorite pieces of music. Ever since he was the very Wee T. 

Like this.

He and I would sit together at home and watch the Vancouver Winter Olympics that year and this commercial would come on.





And no matter what, it had his immediate and complete attention. Mid scream/puke-fest he would calm down and listen.  It got to the point where I would just hum it in the car praying he would stop crying.

It usually worked.

And now I share his enduring love for Beethoven's Ode To Joy as we come ever closer to his 3rd surgery.

We had a phone conference with Dr. Hanley (the "Beethoven of  Pediatric Cardiothoracic Surgeons") last week.  We are so encouraged.  He said he is very confident in his recommendation to septate.

(FYI, I will also refer to this as the Bi-vent surgery, or bi-v)

He doesn't do these surgeries all the time, but maybe 2-3 a year.  But when he has recommended a child for the bi-v, it has been successful every time.  Only a few times has he gotten in to the surgery and, before trying to septate, has determined it to be a poor choice and had to go to plan B.  I feel like these sorts of statistics speak volumes.

For now, we will get a cardiac MRI sometime in January, and possibly a second cath.  The MRI will be the last thing that could change the course of this surgery, pre-operatively.  They will get a 3D picture that can show his cardiac output from that small LV.  That is, how much blood is that ventricle pumping at a time and is it sufficient to support a bi-v physiology?  Dr. H just successfully performed a bi-v about a week ago on a child with a cardiac output of 30mLs per something something something.  So we are hoping his MRI shows a CO of anything more than 30.

If that still says bi-v is a go, then we will schedule for April.  At that point it will rest on Dr. H to look intraoperatively (during surgery) to make sure the chordal tissue is not attached to the wrong side of the existing septum.

In a normal heart, the valves are basically tethered in place by chordal tissue...I think of them as bungee cords.  They keep the valve from prolapsing.  But since his septum is incomplete, it's possible that one of those chords might be tethered to the RIGHT side of the septum instead of the LEFT.  If that is true, then Dr. H can not septate.  You cannot sever chordal tissue.  So if that is the case, and they canNOT see then pre-op, then he will have to abandon the bi-v and he will attend to fixing the valve, since he will already be on bi-pass.  He will not, however, just continue on to the fontan.  He could if we asked him to, but his professional opinion is that it is far better to repair a valve (bi-pass is essential for this) and then allow the child to recover for somewhere around 6 months before doing the fontan OFF bi-pass.  So. because he is the expert here, we will go with what he recommends.

However, we are incredibly optimistic at this point that the bi-v is in our future.

For now, we wait on the cardiac MRI to confirm yes or no.

We are fortunate enough to have so many amazing doctors counselling us through these decisions.  One of whom is Dr. Obayashi.  He is now on the other side of this country, but we are communicating and he will, likely as not, show up at Lucille Packard during our stay.  Because Dr O wouldn't miss that.  :)  Anyway, his last text to me was this:

Re: Hanley:
"He's brilliant and technically phenomenal.  In my opinion, you're getting the best in the World.  Knowing this will help you move forward without much hesitation or regrets.  I'm happy for Tiernan and the family."

So grateful for all the people God has placed in our path.  I listen to Ode to Joy with a new appreciation these days.

Here is another version of that inspired piece that is worth watching.

What ever came of our meeting with Dr. Chen....and a cute Tiernan story

Jason and I met with Dr. Chen a number of weeks back and we really liked him.  I am so glad Seattle finally has a quality Chief of Surgery!  He was straight forward and personable and NOT about the ego.

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.