Hello out there! Figured it was about time for a little update. We have had a very busy July and Tiernan's heart has been adjusting and readjusting to some changes.
Back at the end of June Dr. Park loved how things looked so he dropped the Diuril dose. Shortly thereafter, we headed to Missoula for 2 weeks. We had a wonderful visit and Tiernan ran around like never before. He went on walks around the University of Montana (mostly because he could convince people to buy him chips and drinks at The Market in the UC).
He fit in PERFECTLY with the Williams Clan and worked on his photographer skills, starting with GG at her 90th birthday bash.
We came home for a week and had to go in for yet another round of labs.
Let me say that there is no place like Mary Bridge Clinic for blood draws, and Phlebotomist Gary is typically a magic man. But this time, despite Child Life being there, it took him 2 pokes (almost unheard of) and he may have been a tad dehydrated so his blood wasn't flowing too easily. Regardless, we got it done and then made the 45 minute drive home only to be called back because someone had put his blood in the FREEZER!
GAH!
Round two went okay. Or so we thought.
Within a few days we left for 5 days at Cannon Beach with my family. 2nd day there I got a phone call from Dr. Park. The labs had been run only for his BNP instead of including the Renal Panel for Kidney stuff. So this meant he would need more labs (3 in 2 weeks) when we returned.
But most concerning was the BNP. it had LAUNCHED from a normal 90 up to 333! That is well above where it had been at any point since his surgery. Dr. P was definitely not happy with this but didn't feel it was an emergency. So we got home and the next day went in for more labs. Gary got it in one poke and did all the right tests and they came back looking much better. Pretty darn perfect in the Renal Panel actually. BNP had already dropped to 214 so we all feel better about that.
What have we learned from this?
Every time his BNP jumps, it correlates directly with a change in meds...specifically when we wean the diuretics. Initially his heart freaks out a little and then upon further reflection decides it's not so bad on lower Meds. And then it's happy again and we change the meds again and we start the cycle again. So I am really trying to take the jumpy BNP in stride. Especially since he looks amazing! He feels great and it shows. He can run around with his neighborhood BFFs and hardly gets tired.
At the beach, by the way, he could have done this all. day. long.
Since getting home, he has started Theatre Camp (his first day camp) and LOVES it. He's one of the Brick Peddlers in the Three Piggy Opera. 🐷🐷🐷
It is helpful for me to know what would change his diagnosis to severe. It's called Reversal in the pulmonary veins. So if we are on vacation and he gets sick and we are in an ER and they get worried about the MR. I can ask if there is reversal in the PVs and they will, first off, be super impressed with me, but more importantly, be able to discern if it's worse than his normal MR.
The top spreadsheet was just the pain med wean from after his second surgery in 2009. The bottom two are from this past year post bivent.
UPDATE:
Tiernan's Heart Twin, Walker, had his surgery and did pretty well except that his Mitral Valve is not doing well. He had moderate regurgitation that was not improving with Enalapril like Tiernan's has. So he is going back into surgery tomorrow to hopefully repair that as well. If they can't get it to work they will need to replace the valve entirely. That adds considerable complexity to life so please send out some prayers they will be able to close the cleft and stop the regurg.
All of the talk of Walker's valve prompted me to ask for a little more clarity involving his Mitral Valve. So I asked Dr. P how he diagnoses moderate as opposed to mild or severe regurgitation. He said that Tiernan's is moderate because the "height of the jet" goes to the back of the atrium.
Translation: the blood pulsing backwards through the valve from the LV to the Left Atrium makes it all the way to the back of the atrium.
Also, the opening in the valve is pretty wide.
The change he will look for to indicate a change to "severe" Mitral regurg (MR) would be that the blood trying to enter the LA from the Left Pulmonary Veins (from the lungs) would get pushed backwards due to the amount of MR.
Here's the best visual I could create given my limited tech abilities.
MOVING FORWARD:
Tiernan starts Kindergarten in a month! We are going to switch his Beta Blocker from the 3X daily Propranolol to a 1X daily Atenolol. That will mean meds only in the am and pm! Wow!
THROWBACK THURSDAY:
For comparison:
We will now have:
Lasix BID (2x daily)
Spironolactone BID
Enalapril 1x daily
Atenolol 1x daily
Aspirin 1x daily
This is HUGE!
Atenolol does cause drowsiness so we will give it at night and hopefully a bonus will be that he finally sleeps through the night!
I think that is all I have for now. Look for some fun posts about his performance and the start of kindergarten coming soon!
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