In an effort to get more of the CarePages readers to find us at the new location at CaringBridge.org I posted a more recent update (& somehow I posted the second part first but am posting them here in the order they were originally written):
12-12-17 Cardiology Visit
12-12-17 Cardiology Visit
Journal entry by Valerie CURREN — 1 hour ago
Dear Prayer Warriors,
Thank you so much for praying for Josiah’s Cardiology visit today. Things went very well! We had a late start & significant traffic problems but were still able to be seen even though we got to the hospital well after our scheduled time (as was an apparent trend today per staff). Josiah had an Echocardiogram & an EKG & then was seen by the Pediatric Cardiology Fellow & then his regular Pediatric Cardiologist.
Basically his heart is doing very well overall and the Echo is nearly unchanged from the last one 2 years ago so we don’t need another Echo for Two More Years! The Doctor wants to see him back in a year for an EKG & visit but he could have been pushed to put off the visit for 2 years too.
I told the Fellow that I wanted to discuss the implications of the Bubble Study done during the Liver Transplant hospitalization & that was something we thoroughly discussed later with the main doctor. Basically the Bubble Study was done because there were significantly different blood oxygenation numbers found from two different sites on Josiah’s body post-transplant. They injected a bubble of air & watched it pass through his heart & discovered a “Right to Left Venous Shunt”. I’d wanted to learn more about the oxygenation issues & whether the shunting should be corrected to (potentially) facilitate further improvement in Josiah’s developmental, etc, issues…Some of these thoughts grew out of commercials I’ve heard for Hyperbaric Oxygen Treatment that has been shown to contribute to significant improvement for numerous conditions, including Autism…
Anyway the Doctor thought the initial reason for that Bubble Study may have been in error because there has been no (that he knows of) evidence of inadequate oxygenation for Josiah, including readings from pulse oxymeters and bloodwork, I believe. He said that there is often blood vessel shunting in the Pulmonary blood vessel region that can be associated with Liver Disease, & they don’t know why this can occur. It is possible that now that Josiah’s Liver is functioning pretty normally that such shunting may disappear on its own. Basically there is nothing to worry about here so he’s not at all concerned.
He showed us some images, both still & video, from the Echo & explained much of what was in view. There is some Aortic Valve Insufficiency that shows up as a blue jet (like a blue flame, ironically) of some blood back-flowing from the aorta back into the Left Ventricle. There is also still the “Trabeculation”, fingers of tissue growing inwardly into the Left Ventricle. He expounded on this tissue abnormality & said that it is often seen with Congenital Heart Defects & may represent a way in which the Heart Muscle itself did not do a normal “knitting together” & smoothing out. It is likely that Josiah has always had some degree of this trabeculation, though older imaging studies may not have been as refined as currently so couldn’t have detected it. Also during his Heart Surgeries they apparently don’t normally do anything to image the internal structures of the heart while it is stopped & emptied of blood while on bypass…
The bottom line is his heart situation is basically pretty stable & doing quite well. Surgery, if & when it becomes necessary, is likely quite a few years away, still hopefully more than a decade!!!
We talked a bit about the changing nature of Medicine & his Fellow’s/Colleague’s background coming from General Medicine & Internal Medicine & now specializing in Congenital Heart. We had been told years ago that Josiah would always see a Pediatric Cardiologist as Adult Cardiologists don’t know about the Birth Defect scenarios. Apparently the Congenital Heart arena is changing in that there are now certifications for Congenital Heart for Adults–Grown-Ups with Birth-Defect Heart Issues, something that’s developed in the last two years.
This lead us to discussing the idea of Medical Home & Family Centered Care & the possibility that sometime down the road there may be certain providers that May be more equipped to care for Adults that have issues carrying over from childhood, even including Developmental Needs. This was exciting enough news for me that I told him that if he knew of committees/discussion groups that seek input from family members that I would like to be considered & he will add me to his list. Apparently these are new avenues that medicine is branching out into & I think that our wide-ranging experience with medical needs in multiple domains could benefit certain key discussions.
Josiah was not feeling well unfortunately, he has a cough & had a fever yesterday, so he was pretty low-key. He did engage the Ultrasound Technician during his Echocardiogram with some questions about what was showing on the screen & asked a couple of questions of the main doctor as well. He has no activity restrictions except he is Not supposed to Power Lift Weights. Basically this means he is not to try to randomly pick up the highest weight he can possibly handle for just one lift. Such power lifting is apparently associated with increased dilation risk to the Aortic Root so it’s a big No No for Joe. He is allowed to do regular weight-lifting, with weight that he can do 10-15 repetitions on without an issue fortunately, since Josiah does like to do this occasionally…
We really had a great visit today & the doctor was a true joy to work with–what a blessing!