Cardiology Report

Today was Tiernan's first full cardio appointment in over a YEAR!  Crazy!

It was also our first cardio appointment with Dr. Park instead of Dr. Stefanelli or Dr. Obayashi.  We are I am still a little sad that they won't be around, but I think Tiernan loves Dr. P.

 Tiernan has a few favorite things to do at NWCHC:

He likes to chill in the little chair in the waiting room

 



and he has to keep an eye out for the "ambences" across the street at Mary Bridge.

 

 

But this time he really decided to take charge of the appointment from the beginning:

 



He was Mr. Cooperative with the sats check.  They are holding steady at 86. 

 He showed how he can put on his EKG stickers.

 

and then he attached the leads

and finished up by reading his EKG results.  :)

They were unchanged from last year.

 

While waiting for his Echo, he pretended to be Dr. P and took a few spins on the Doctor chair.

 

Next he decided to be a ROCKSTAR in the Echo room:

 



He was so super chill watching The Little Engine That Could that I was able to sit on the comfy couch across the room for the first time since the days when it took both Jason and me to get him to any appointment.  Not that I got to relax for long though, because apparently the tech is able to get pictures in under 20 minutes (as opposed to 45 to an hour) when the patient is not screaming his head off the entire time. 

Results: UNCHANGED from a YEAR ago!  Praise God!

 

And because he didn't need a sugary distraction during the echo, he got one as a reward.

 

He actually dropped that on the floor moments later. 

Luckily, I had brought 2 more so he got a blue one...which landed on the floor as well.

He finally got a green apple dum dum and made that one last until the very end. 

 

Overall, the appointment was fantastic.  I have some new understanding surrounding his leaky valve though.  Because he has an AV canal (hole through all four chambers) he doesn't really have the typical Tricuspid and Mitral Valve.  True Hypoplastic Left Hearts have a small mitral valve.  Tiernan has what is called an AV valve...it is a one valve instead of two and is therefore larger than either individual valve would be.  In addition, because an AV valve is abnormal, they would be faced with the problem of finding a valve big enough to use as a replacement. 

So.  What all this means is that if they cannot repair at the time of the Fontan, it would be highly unlikely they would attempt a replacement.  The point of the Fontan is to take the workload off the single ventricle.  It will do this, but his leaky valve would continue leaking and likely get worse over time causing more stress on his heart anyway.  This means that if the valve causes too much trouble post Fontan, it could mean an earlier transplant listing. 

Of course, this is an example of the the proverbial cart being waaaaay before the horse.  And Dr. P reinforced our mantra:

"We don't know what science and technology will bring in the coming years so let's not worry too much about that now."

 

We will not let this steal our peace.

 

Especially in light of the highly encouraging news regarding the search for a new Chief of Pediatric Cardiothroacic Surgery at Seattle Childrens.  When Dr. Woods left, we were pretty much set on needing to travel to Stanford for any future surgeries since we did not feel confident having Cohen again.  But then Cohen left as well, and hope returned that we could stay local.  But the search is a long (understatment) process and so we've been in a limbo, so to speak. 

But today Dr. P shared a really cool update. 

Seattle Children's is gearing up for the round 2 interviews and 2 of the candidates (maybe the only candidates) are a guy from Dallas Children's with a pretty great reputation and, inexplicably,  

this guy...Dr. James Tweddle.

Dr. Tweddle is the guy Dr. P studied under in Wisconsin prior to coming out to NWCHC.  Additionally, he is the guy Dr. Woods left us to go work with in Milwaukee.  He is one of the top rated Pediatric Cardiothoracic surgeons in the country.  His outcomes with HLHS and Fontan patients is stellar.  No one at NWCHC can explain why he would want to leave what he has at CHW to come to SC but clearly he's etertaining the idea.  Crossables are all crossed. This would leave no doubt about staying in Seattle for the Fontan.

 

Speaking of the Fontan...

They only schedule Fontans for the summer to avoid potential illnesses during cold and flu season.  Because of the weird valve issues, Dr. P seems prone to at least keeping open the possibility of the Fontan taking place next summer.  [cringe]

This all depends on how he is doing in May.  If all is well and largely unchanged then I expect we might wait another year.  But if things are starting to deteriorate, then they will start scheduling caths and surgeries.  [sigh]

I won't lie.  This news sort of dampened my glee a tad, but once again.  It will not steal my peace.

 

Well, after cardio, they sent us over for bloodwork and he continued his amazing superstar behavior and didn't make a peep during the entire thing.  Shocked the phlebotomist as well.  :)  We will hear Monday about his kidneys and liver BNP or Brain Natriuretic Peptide levels.  This is something that is produced in the heart when it is failing.  Today's levels don't matter except as a baseline to which they will compare levels in May or whenever.  A discrepency will indicate need for intervention. 

While at Mary Bridge Clinic following the blood draw, we randomly ran into our old friend Dr. Pickens, GI doc extraordinaire.  He was thrilled to see how well Tiernan is doing and (as per his norm) gushed over my weight loss.  hehehe.  Love him.  :)  That said, I'm not sorry we don't have him on speed dial anymore. 

 

Finally we headed for home but made a stop for lunch and plane watching at The Hangar Inn near our house as a reward for Tiernan's outstanding appointment. 

Happy HAPPY Tiernan.