Thanks for all the support y’all! Quick update…Korah is still down and out so I called Teladoc today-one of our many benefits of our travel club membership – crazy, I know! It didn’t cost us anything to get a doctor to call me back – within 5 minutes – and get her a prescription called in. Been doing essential oils too so maybe she will be better in a couple of days. She has been on the couch since Sunday night!
Kaston’s Holter results will be sent to Dallas for review that we will discuss next Friday during our visit. We are not expecting any surprises heart wise that we aren’t already aware of.
Other issues to address will be liver damage, as new studies and information kids/adults with the Fontan circulation have some degree of liver damage, whether just scarring of the liver and gradually fibrosis and full blown cirrhosis of the liver. Some of the top centers like Children’s Boston and CHOP (Philadelphia) are starting screening immediately on all Fontan patients and some centers their standard is 10 years post Fontan. He is 11 years post Fontan. We are not sure if Childrens Dallas is screening the liver or if they even have a program in place yet.
So many times these kids are referred out to bigger more advanced centers (like when we referred to Texas Childrens in Houston for neuro issues). Dallas is great and a top center in the nation but not as big as TCH or CHOP.
Here’s a simple explanation from Mayo Clinic.
I have read so many of these hospital sites and read studies from so many journals it would make your head spin. One of the last reports indicated 100% of Fontan kids/adults screened have a certain degree of liver damage. Problem is, they know what’s causing it but have no way of fixing it, except for transplant, when it is completely failing. By then it puts so much pressure on the heart that many end up in heart/liver transplant. A few years ago Kaston had some blood work come back with terrible numbers on his liver and it freaked everyone out. They chalked it up to bad test results. Now I am beginning to wonder??
Of course we have only been seeing this information come out over the last year so this is all very new to us, as well as the medical community.
Alot to wrap your brain around, and the source of some anxiety in mom!
Overall we think the visit will go like they usually do, EKG, Echo, see the doc, answer/ask questions on both parts and we’ll be outta there!