Thursday, August 1, 2013

We have had a good long run of normal



 Tiernan went to cardiology today.  He got to see his buddy Christopher too!
 He was a super patient for Super Nurse Jodi. His sats were awesome at 86 +/- and HR in the 98ish range.  Weight was 34 (fully clothed, mind you). Height is just under 39 inches.  As far as I can tell, that puts him at the 25th % and 15th % respectively.  Still sort of a peanut. He got to learn how to take his blood pressure.  (upper was 104 over something and foot was 110 over something)  EKG looked great.

Tiernan was so cooperative for Echo tech Chris.  He chilled out watching Scooby and enjoying a lolly.  Even when we had to go back in for some more pics of his arch.  


After rocking the cardio part, Tiernan did a superhero job with his blood draw and chest x-rays.  He also did a little rowing at Mary Bridge clinic and was rewarded with crazy delicious milkshake at Shake Shake Shake in Tacoma.  YUMMMM!  (mommy's nutella milkshake was incredible too.  That's right.  N-U-T-E-L-L-A)


Back to the results:
Dr. P says the echo clearly shows he has Collateral Vessels.  In short, these are vessels that grow and cause extra work for the heart.  This does not help his leaky valve either.
Speaking of the leaky valve:
It is his "tricuspid valve".  I always thought it was his "mitral valve" that had the issue.  Not so.  Dr. P drew me this picture.  (even though when I asked him he looked at me in terror because "he doesn't draw".  I think he did fine.  
Below you can see the two ventricles.  The left is actually drawn on the right.  (just go with me on this) It is just slightly too small.  The Z score is the measurement at the top.  Way back before his second surgery, the docs were all kicking around the idea of closing the AV canal and hoping his LV was big enough to do the job.  A normal Z score would be 0, as he noted.  Tiernan's is -4.5.  In order to have convinced them to go for the 4 chamber fix it would have needed to be around -2.5 or less.  T's is juuuuust a bit too small.  Anyway, I've labeled the tricuspid valve and he has drawn the leaflets as big floppy things.  And that is what they look like on the echo too.  Big and floppy.  They don't close all the way and so quite a lot of blood flows backwards.  They are meant to be one way valves.  His most definitely is not.  
So.  Because of this ugly valve, he needs those collaterals to be coiled in a cath this month.  His arch seems okay on the echo but might need to be ballooned.  Dr. Ballotti (spelling?), Dr. Stefanelli's replacement, started at NWCHC today.  He will be performing Tiernan's cath and will determine if he also needs to balloon his arch again once he is in.  

 I took a video of the echo and I **think** you can sort of see what Dr. P is talking about when he says big floppy leaflets.  I don't know for sure.  Not being an echo tech and all...still, it's interesting to see.  Maybe.  Or not.  




The other part of the cath will be to get the pressures and measurements for the Fontan.  
The Fontan.  
We do NOT know when it will take place for sure until after this cath.  (a lot hinging on it, no?) But it will either tell us he needs it soon.  As in October soon.  OR it might tell us he's good to wait until Spring/summer.  But it doesn't seem at all likely we will wait longer than that.  The darn valve won't let us.  
So now we need to start paying much more attention to the new team up at Seattle Children's.  Dr. Chen has arrived and begins surgeries as Chief Surgeon on Monday.  He as an excellent reputation but it's a wait and see him in action sort of thing. 
We are hoping, and please pray, that whenever the Fontan must take place the surgeon is able to repair his valve with a few stitches.  However, this complicates the surgery much more because even though the Fontan is called an "open heart surgery", it actually happens entirely on the exterior of the heart.  If they decide to try and repair the valve they will have to literally open the heart and work inside, thus upping the level of complexity.  
If they cannot repair the valve then they will need to wait and replace it eventually, but that is a whole different ballgame due to the size valve he would need.  

The cath will be scheduled tomorrow and I will update when we have a firm date.  I suspect this blog will be seeing a bit more action this year.  I can't believe the last time I blogged was in OCTOBER! That was, indeed, a good long run of normal. 
And now on to the next chapter.


PS...please send good thoughts/prayers/mojo to one of Tiernan's besties, Alex.  He is down at Stanford for his Fontan which takes place tomorrow.  Tiernan and Alex go to preschool together and his mom, Dana and I have worked together at NVI for the past 10 years.  They are so important to us.  We wish them all the best as they start this chapter.

3 comments:

  1. Of course our thoughts and prayers are with T! Thanks for sharing the echo. I never thought of video taping one, but I will do it at our next appt! I feel like I can definitely see the big floppies!

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  2. I wish I could read them and really know what I'm looking at instead of just speculating but I think the big floppy valves seem pretty clear. :)

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