Today is the 2nd anniversary of Tiernan's bi-vent repair, i.e. The Surgery That Changed Everything. You can read about that if you like here:
Tiernan had his cardiology check up about 4 weeks ago and Dr. Park says he's never seen him look so great. He still can't downgrade his valve leakage from moderate/severe, however, the size and other functions of his heart have improved enough that he felt confident enough to drop his evening Lasix dose! That may be the best med change in the history of med changes!
I have to remind myself from time to time that those medicines are the key to success. Without them he would find himself in heart failure in a hurry I think. So we won't likely see many more significant changes in meds anymore. As it stands now, his meds include:
Diuretics:
Lasix: 20mg ONCE daily 🤗
Spironolactone: 25mg twice daily
Heart rate and Blood Pressure:
Enalapril: 20mg twice daily
Atenolol: half a 25mg tab once daily
Blood thinner:
Aspirin: 81mg once daily
Other stats:
Height: 45 inches (just under 4 feet. He is finally showing some good growth there. It's taken 2 years but he's doing it)
Weight: 45 lbs (which means he has gained 10 lbs since returning from Stanford. It's honestly amazing that he hasn't gained double that amount given how much he eats.)
Sats: 99%. I might never get used to the shock of that. I'm so grateful.
Dreaded Labs:
We did these a week after dropping the Lasix dose and they did show that his BNP had increased (as it always does when we change his diuretics) but only to 98 and below 100 is considered completely normal.
The rest of the panel looked to be the picture of perfection and even his nephrologist seems excited (although I'm not sure that is a feeling she ever experiences). She was even happy enough to let us reschedule his June appointment for October so he didn't have to miss a day of art camp that week.
Speaking of camp and activities:
We are here in Missoula visiting family and friends. Tiernan has been busier than all the rest of us combined. All last week he was at his first All Day Camp experience. He had an amazing week with the Outdoor Adventure Camp through the University of Montana campus Rec youth programs. The week was filled with swimming lessons and games. They went to the planetarium and met Smokey the Bear who taught them how to safely and responsibly build a campfire.
The highlights of the week were the "white water" rafting on the Clark Fork River. The kids got to do the paddling most of the time and he thought it was amazing. He loved the "Rapids" and getting to spin the raft around in circles. They DID have to stop and wait for "the slow poke boat" a lot which was his least favorite part. Absolutely an excellent summer experience for this action loving kid.
The last day of camp was all about hiking. The photo below, for those not familiar with Missoula, shows him pointing toward Mt. Sentinel and the white spot up near the sky. That's the "M". It is 3/4 of a mile up with a 650 foot elevation gain and 11 switchbacks. It is a rather grueling hike. I actually hate it, to be perfectly honest. Tiernan hiked it with no problem. He said the going down part was harder than going up part. He's VERY proud of himself. (But not as proud as I am.)
Tiernan and his cousin Evan are like 2 peas in a pod and they had a great time running around together at the park. They are both daredevils of the first order and so when E climbed up on top of the tunnel, Tiernan wasted no time in following him. Of course, once he was up there, he said, "I'm a bit squeamish about heights!" (Yeah, right!)
They also share the silly genes for sure.
However, the boy who is squeamish about heights had zero concern about jumping down.
Just one of the things I love and miss about Missoula are the community events and opportunities for biking just about anywhere you want to go. Yesterday was the Sunday Streets day where the majority of the downtown was closed off to cars. Community members and business owners filled the streets and played games, did crafts, (Tiernan and Tristan built a rack and got to use power tools, to their great delight) yoga and OULA on the Higgins St. bridge, hula hooping and biking in the middle of the street....pure joy in my opinion.
Tiernan and Tristan are both enjoying the opportunity to practice their piano on Granda's beautiful baby grand. (I'm just thankful Granda has been patient with their noise.)
Today Tiernan and I went on a lovely bike ride around the U of M campus. He was excited to show me the spots of his favorite camp experiences and lead the way around the university. We easily rode around for an hour and when we got home, he was off to Splash Montana for some water fun with Jason.
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