What’s been happening?
Since our last update we’ve been so busy enjoying “normalcy” free from the burden of an impending procedure/surgery, that I haven’t considered how many of you are still interested in Bronson’s journey and even invested in his overall well being. Please forgive me for being a bit selfish! We still often acknowledge how grateful we are for each of your personal support and those of you who collectively as a whole have cheered for us on the sidelines. THANK YOU!
Now onto an all inclusive update about “What’s been happening” that will encompass major events along with some minor news yet still worth highlighting.
GOING BACK TO BOSTON…THE DATA SAID SO
Stanford had advised us when we were there in March for the heart catheter that the Melody valve in the Mitral position was leaking and would need to be expanded to seal the leak. This is the valve that is still in the experimental phase for the mitral position, that only Boston is using. So Stanford had recommended that we go back to Boston to dilate it. The appeal to choosing this valve for Bronson when it was surgically placed on 8-6-2014, ( less than 3 weeks after his bi vent surgery), was that it can be enlarged in the Cath Lab as he grows. That is exactly what the team in Boston intended to do during the Cath, except that they couldn’t determine the source of the leak. They couldn’t decipher if the leak is through his valve, which would mean that dilating the valve would’ve made the leak larger or if it’s around the valve which would have resolved the leak, but with a potential risk of pushing the valve back into his ventricle creating more obstruction. So the final consensus is to surgically remove the Melody valve and replace it with the smallest adult tissue valve. We leave this Sept 29th for that surgery scheduled Oct 2nd!
Along with the determination for surgery, the data from that cath also revealed a “MIRACLE”. The end result from his Bi Ventricular repair last July 18 that put us on the path to transplant, was his dangerously high lung pressures from his “stiff” Left Ventricle that was in diastolic failure. We discovered from the cath at Stanford, in March, that his lung pressures have resumed to the normal range. And now we know that his ventricle is RELAXING! “Diastolic Dysfunction ruled out/mild”, is the exact verbiage taken from the Echo and Cath reports
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. His ventricle has grown because HE has grown and continues to grow! So by the Lord’s amazing grace and abundant mercy we have escaped transplant… for now.
In the waiting room to be taken back for his Cath
Stef! Our fave NP and friend.
“Reunited and it feels so”…. like we were just here!
BUSTED! Taking candy from Janet’s drawer…. he sure does feel comfortable on 8 East!
A WISH COME TRUE
Bronson’s wish was to see Ninjago and Emmitt at LEGOLAND. Our Make A Wish girls, (Wish Grantors) had arranged for us to go, mid May, to LEGOLAND in California and also see Disney Land too. Since those parks are each located in different cities in CA, we were rerouted to Florida where both Disney WORLD and Legoland are in the same city. We stayed at the Give The Kids The World resort and spent about 2 hours total at Legloand. The rest of our time from the five days of our seven day trip was maximized at Disney World. They treated us like royalty anywhere we went on the Disney property. It was quite surreal! It made our Legoland experience that much more underwhelming.
I shared below a small fraction of the total memories captured. Enjoy!
Giggles with Mickey!
He did the “Hot Dog Dance” with Mickey!
He’s charming “Sofia”
Goofy Golf at Give Kids The World
We rode the Chevy Test Track at Epcott 3 times because he had so much fun creating his virtual car. It was his fave ride!
Enamered with Donald
Fam photo
Flirting with Tinker Bell AND even got a KISS on his cheek from her!
Star Wars day at Hollywood Studios
He pushed Darth’s buttons and turned his mask off 😉 … OH NO!
The Sand Monster negotiated his laser gun from him and Bronson got it right back!
Laser Blaster!
THE THREE P’S
Physical Therapy:
Bronson is loving getting stronger from his PT. His therapist is God sent! She’s exceptional with motivating him to really push past his limits and set new ones to overcome. Since starting therapy he’s been obsessed with flexing his muscles and showcasing his newfound strength. The constant “watch me, watch how strong I am, watch what I can do” can be overwhelming for anyone who gets enticed by his charm to … “watch him”!
So proud! Each block represents how many times he completed the obstacle course that incorporated stacking them.
Lots of deep stretching to encourage his lungs to expand.
Pulse Ox:
Before we left Boston after his Bi Ventricular repair, Dr. Blume arranged an altitude test with Pulmonology. We found out that his lungs would require supplemental oxygen to accommodate higher elevations. It was discouraging for us to watch his O2 saturations decline so fast at an equivalent to 5,ooo feet. We’re “camper’s” and the only way to escape the desert furnace in summer is by traveling North to altitudes much greater than 5000 feet. However since we discovered that his lung pressures were resolved we did our own retest on the plane to Boston for the cath this past July. His O2 sats were steady at 95 -96 at essentially 8000 ft real elevation before they quickly declined and we had to start his Oxygen Concentrator. 8000 ft is a significant improvement to the 5000 ft during the elevation test. That experiment gave us the confidence we were seeking to trek him up North and see what would happen at actual altitude. We are encouraged by the outcome. His oxygen saturations were stable at a range of 94-97 at about 5000- 6500ft. They did dip down to 90-91 with exercise but promptly settled in at baseline once he rested. Now we feel ready to try camping and will of course have small O2 tanks with us on standby. Bronson’s first camping adventure in the raw outdoors will be this coming weekend! He is so thrilled.
There it is at the bottom of the Mogollon Rim, on the Houston Mesa Rd… for you Arizonanites!
And on the finger clip too.
Exploring a trail.
It was his first time seeing a forest.
King of the rock!
Pre School:
Learning is tons of fun for Bronson. Socializing though is his favorite part of school! Three days a week when I pick him up and ask him what they did that day, he only shares with me about the snack they ate, the game they played, or the song they sang. We are assured that he is learning because throughout the week he will randomly talk to us about a variety of topics that we know he’s not learning from us! His last day until we return from surgery was Thursday the 10th. So from now until we leave on the 29th we will be in our official germ isolation period in attempt to keep him healthy for surgery on 10-2.
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- So proud that he spelled Dinosaur….with the help of his book.
