every six months we get a reality check

 

Today I found myself wondering how many times Tiernan has gone through the steps involved in a cardiology appointment in his (nearly) 8 years.  (I don't know the answer.  I lost count in his first 6 months) I often marvel at the ease with which he navigates this process.  It is really no big thing in his book.  In fact, he loves going to visit Dr. P and the nurses.  (A true testament to the quality of care we are accustomed to at NWCHC)

 

Chilling out waiting for Ashley to call us back

 



 Tiernan has finally been showing steady growth!  He is 3'11" and 52lbs of energy and personality.

Today there was a nurse on her first day of training at the clinic, so Ashley (right) was walking her through the process.  Putting the stickers took a bit more time than usual and all the teaching involved more touching to find the right spots, which resulted in giggles from this ticklish boy.
Apparently Dr. P describes Tiernan as having the most epic heart EVER, since there isn't a part of it that hasn't been surgically changed.  I am split between relief and sadness when I hear that.  This kid has been through a bit.

 I cannot believe how long he looks on that bed!!!!  How did that happen?!

 

 

 

Everyone was commenting on how much chill he has regarding the EKG and Echo.  They all asked if he was always like that.  Uhhhhhhmmmmm, I 'm going to go with a big nope!

 

I would say this is a much more accurate representation of how he used to respond to EKG and Echos.  We were always prepared for the possibility we would need to go with sedation.

 

 

He wasn't always a screaming purple lunatic baby though.  While searching for something to show the nurses how far he has come, I came across this cutie, in the very same clinic as today.  So naturally, we had to recreate the moment as much as possible.



As far as the heart stuff.  Last time Dr. P noted that his Left Atrium was bigger.  He thought it might be a fluke and was not going to worry.  Today, however, his LA is again, bigger.  So what does this mean?  No changes for the next 6 months.  All meds stay the same.  His BNP is at 50!  THAT is awesome! 
The new plan is as follows:
6 months from now, IF the LA is still getting bigger, it really is evidence that the mitral valve regurgitation is causing problems.  That valve keeps letting some of the blood return back through from the ventricle to the atrium which means there is a higher volume of blood in the LA at all times.  This makes the LA get bigger to accommodate that increased volume.  The first step at this point will be to increase the diuretics again and reassess in another 6 months. IF the LA is not any better by next summer, THEN he will have to start pushing harder with the Enalapril (blood pressure med) and Atenolol (heart rate med) which will, once again, make The Kidneys cranky.  They are currently super chill, but an increase in the pressure and HR meds will quickly change that. 
IF after that change, his LA is still not responding, then we will have to start conversations with surgeons again. 
We have known that darn mitral valve would need attention eventually.  We just REALLY want him to be big enough to have an adult valve so it won't require more than one replacement.  So we will be consulting both Chen and Hanley.  It is possible that Hanley will feel confident he can put a few stitches in and tighten it up to buy time until he's big enough for an adult valve.  If he does, then we will likely take him up on that offer and head to Stanford again.  If he doesn't think it will work, then we will likely just stay here and have Chen do the valve replacements, since that is a very commonly done surgery.

Let me reiterate, none of the surgery talk will even be on the table for the next year or so.  And all of it needs to be tempered with a giant reminder that he is doing SPECTACULARLY WELL. 

 

Dr.P DID want to do a Holter monitor though.  Nearly 8 years and this is our FIRST Holter!  I find that to be pretty amazing.  There is really not much he is worried about.  His ONLY rhythm issue has been inconsistent premature ventricular contractions.  (PVCs) He had them last time but not this time.  Like I said, inconsistent.  However, a Holter allows them to get a snapshot of his heart over 24 hours of sleep, exertion and typical activity.  Thank goodness it's only 24 hours though, because it has been quite annoying already since those leads do not want to stay stuck to a sweaty, active boy.

 As usual, the appointment was filled with silliness and shenanigans with these two.

 

 

 

So the short story is he looks great.  His current level of meds are helping him maintain the status quo, but we need them to help improve his heart over time.  Not spending much time worrying about the future.  It's tough to get the reality check, but he is ready to take 2nd grade by storm!

 

Catch you in 6 months Dr.P.