C4 has been on multiple medications since birth. Prior to his first open heart surgery, we danced the delicate edge of heart failure. We gave Lasix (which tastes terrible) to reduce swelling in his belly and fluid in his lungs, this threw off his electrolytes so we gave him sodium and potassium (which taste worse than the lasix) to try and bring his electrolytes back into alignment.
We gave medications to speed his digestion and medications to decrease the acid in his stomach because when your heart doesn't work right, your body prioritizes where your oxygenated blood goes and your guts are not the winner.
After Open Heart Surgery (OHS) #1, we started on an ace inhibitor (blood pressure med) to decrease pressure on the repaired valves in his heart. No one is sure it will help prolong the life of the valve, but it might, so we try. For weeks to months after surgery, you stay on Lasix as your body gets used to a newly efficient circulatory system and starts appropriately sending fluid out of the body.
Between surgeries, we only have to give a few syringes 2-3 times a day, to stimulate appetite, because he never learned what "hungry" means, to continue to protect his valves from the wear and tear of life. Steroids for his lungs which are struggling under the backflow from a leaky valve until finally, the tipping point comes and we must have surgery again. The goal for open heart surgery is to have the surgery just barely before the person gets sick. On the cusp of something awful happening, so you eek out as much good time before surgery as you can and the patient still has the reserves to withstand the trauma of the surgery.
The first surgery was hard on C4's sinus node, the second one damaged it somewhat significantly, which may lead to a third surgery. In the mean time, we enjoy each day, we eek out as much good time as we can get, waiting until we are on the cusp again.
|19 days post op, OHS #1|