Today was bittersweet as we saw our favorite bald Dr for what is likely the very last time.
Dr Kaine has been with us since the beginning.
Literally.
He first saw Ethan when he was days old with a ToF/WPW diagnosis, and here we are 17 years later.
An amazing Cardiologist with the absolute best bedside manner and personality.
We got a recommendation from him for a new Cardio at St Louis Children’s, but there truly isn’t anyone like Dr Kaine. I did promise him I would have an open mind and he assured me this new Dr would be fabulous for Ethan and appreciate my knowledge and advocacy.
I’m pretty sure he was saying he has thick skin and will be able to handle me as well as the bald kid, but that’s just my guess
(Ha-ha!)
As for the bald kid’s heart:
Ethan’s Melody Valve is still working as perfectly as it was the day they put it in almost 8 YEARS AGO!! Wow-I can’t believe it’s been that long. His Right Ventricular function is working well, and his pulmonary pressures are high end of normal-which is all normal for Ethan.
E’s aortic, mitral and tricuspid valves all show mild leakage-which is unchanged from his prior years echos, so all good.
Dr Kaine chuckled when he told me all this because he said there’s no way you could look at his echo today and have any idea how bad his heart was in 2013.
Or have a clue how sick he was.
Let alone begin to fathom that had we not gotten him to Boston when we did that he would not be with us today.
He hugged Ethan and said goodbye with these words “we’ve been through a lot Buddy and I’m honored to have been a part of your journey. “
And by then I was a blubbering fool.
No, Dr Kaine, we are the lucky ones to have you in the bald kid’s corner for the last 17 years.
Ethan doesn’t look thrilled in this pic-but it’s just because his allergies have gotten the best of him lately and we forgot to put his eye drops in this morning.
I switched my treatment to the Siteman Cancer Center at Barnes Jewish here in STL. Actually, my new Oncologist is Ashley Frith and the Siteman location she works out of is only 7.5 miles from our home. I’ve had 2 appointments with her and am really pleased. At this point she has no plans to change my treatment course, because it’s working! Other than adding in a B12 injection so that now I get one every 2 weeks.
Tuesday I got my port flushed, labs drawn, saw Dr Frith, got all 4 of my shots and had X-rays done of my lower back, pelvis and hip. It took longer than that to just get my labs drawn at KU sometimes!
I am getting my 3 month CTs and Bone Scan this Friday so fingers crossed we see no progression. I’ve had a lot of pain across my lower back and sacrum/pelvis area, hence the X-rays this week. They showed nothing new so hopefully the scans show the same.
Fortunately KU and BJC/WashU share the same electronic medical record system so I was able to sign a release and give my new docs access to all my old records.
I’ll miss KU, but am happy not to be making the 6 hour round trip twice a month anymore!
I also have an appointment tomorrow with a lymphedema Occupational Therapist and week after next with a plastic surgeon to see about having my lymphovenous bypass here instead of in KC.
Speaking of surgery......
Ethan is scheduled to have some foot surgery next week.
Here’s what Dr Schwend is going to do:
Left Brevis tendon lengthening
FHL (Flexor Hallucis Longus)to Achilles Tendon Transfer
Calcaneal Osteotomy
And snip the tendon under his curly toes on both feet and put a wire in to straighten those out!
It’s supposed to be an outpatient surgery, we’ll wait and see if Ethan has other plans, and he’ll have casts on both feet for 6 weeks post-op.
Since his spine surgery last summer, his Brevis Tendon has tightened and pulled his left foot into a permanent flexed position and pulled his heel out laterally. It has made it near impossible to get his AFOs on him (foot braces) and even harder to get him to walk with a foot that stays flexed.
So we will be in KC next week from Sunday the 6th until we feel comfortable enough to bring him back home with us. Hopefully just a few days.
But again, this IS Ethan.
And now that we’ve had our new PPO insurance for just over a month, our deductible has already been met and our out of pocket max will be met after next week. So we’re set until January 2022!
Here’s to hoping we don’t have to use it for anything else the rest of the year!
Oh, and if you haven’t watched the Friends reunion special yet-do it! I thought it was excellent. I’m actually binging all the old Friends episodes now. I really just play them while I paint signs and walk at the gym for a good laugh.
And some good rainy day movies we watched recently were:
“Those Who Wish Me Dead” with Angelina Jolie
“Nobody” with Bob Odenkirk
“Wrath of Man” with Jason Statham and
“Without Remorse” a Tom Clancy story as an Amazon Original.
In case you’re bored.
And like movies as much as we do when the weather sucks.
I’ll keep you all posted on my scan results and E’s surgery!
Much love and big hugs,
K
