October Update (Meds)

In the span of a week Job got to visit with three of his great grandparents! Here he is with my dad's Dad, Pappy.

Job started pulling up to stand in mid September and these days he's standing more often than not!

He got off two of his digestive meds, omeprazole (for stomach acidity) and erythromycin (for gut motility), at the end of September and so far, so good! We are so thrilled! So now he's only on miralax as far as his digestive system goes. He's quite dependent on it and if I'm even a few hours late with a dose he has trouble for a few days.

So now Job is only on enalapril (heart function), lasix and spironolactone (both diuretics) and baby aspirin (for clotting) and sildenafil (his vasodialator). We had to do all sorts of things (stents, surgeries, meds) to get to a place where sildenafil would help Job get off oxygen, but I can't believe how helpful it is!! You can tell when the 8 hours between doses are almost up because he starts turning a bit blue again.

We're waiting to find out if Job will qualify for synagis shots again. They're so expensive ($1,200/shot/month) that they don't just get doled out easily, but we'd really like him to have that extra RSV protection. Studies have shown that for medically fragile kids ages 1-2 yo they're not always effective (or at least not as much as they are for kids up until 1 yo), but Cardiology is pushing hard for insurance to cover it again for Job this year.

That's my meds update! More later!