Only TWO Med Times?

What is this magic? Down to a mere TWO med times! And only 7 meds!

-Enalapril for heart function
-Lasix and spironolactone for diuretics
-Omeprazole and erythromycin and miralax for digestion
-Lovenox for anticoagulation

We finally got off reglan (and switched to erythromycin) because of the potential awful neurological side effects. We're really really grateful that reglan worked (no more writhing reflux pain! no more weight loss!) but it is such a relief to be off of it! The downside of erythromycin is that the prescription is only good for ten days. Lots more pharmacy phone calls for me! They know us well. 😜 All joking aside, Lincoln Pharmacy has been absolutely wonderful! I'm so grateful Tacoma has a compounding pharmacy and we don't have to go up to Seattle for Job's meds.

It was so overwhelming to give Job his meds when he first came home. I believe he was on 14 different medications with 8 different med times? But we've slowly weaned off/down. 🙌 There are probably a few things he'll take his whole life but that doesn't seem like such a big deal any more.

I also have forgotten to post about the "final" GI diagnosis we received back in January. Well, I think we had a good idea that it was secere acid reflux and gastroparesis (delayed stomach emptying), but what I didn't post was the conclusion that these are ischemic issues, stemming from his cardiac issues.

Ischemia is the inadequate blood supply to tissues, or inadequate oxygen and glucose supply for cell growth.

We have always known that Job's lifetime of restricted oxygenation will lead to ischemic issues with his organs. It sounds like this is a bigger problem for most HLHS patients rather than heart failure (once past all three surgeries). But I guess I didn't expect it to have such severe repercussions so soon.

Job's digestive system is suffering from his low oxygenation and thus his stomach doesn't empty quickly leading to acid build up. We're still learning about the digestive system and trying to treat this with diet too, but the fact that so much of this is cardiac related is limiting. But that's true of all of his long term care and that's what so many researchers are focused on now that they have had growing success with the cardiac surgical side of HLHS care.