Sunday is usually a day of clean-up, dishes and laundry, and today we kicked it up a notch, getting ready for the week ahead. It's amazing how grunge collects in a house with seven people in it. So it was a day to comb closets, scrape under beds and generally dust, mop and organize. We are not the cleanest people in the world, and with five kids we are even less so. I always take comfort in the story of a woman who raised twelve children and didn't have much time or energy for housework. A stray dog poop in the corner would linger until it became hard enough to kick around the house. We have not yet stooped to that ... But I digress.
Levi has been in great spirits. The strangest thing about this surgery is that he is not a sick kid. He runs around and sings and wrestles with his little brother. Just looking at him, you would never think that he was not a regular little boy. But put your hand on his chest, feel the "swoosh, swoosh" sloshing of blood that should be "thump, thump," and you realize all is not right in his world.
Levi's exact condition is a variation of tetralogy du fallot. This is a collection of heart defects that in very general terms keep his blood from becoming fully oxygenated. There is a hole between the left and right atriums and his pulmonary valve is restricted. Bottom line, the heart operates inefficiently and if left alone he would, at some point, die. The condition causes cyanosis, also known as "blue baby syndrome," and many children require operation before they reach Levi's age. Some reach adulthood before it is corrected, so there is a lot of variation.
We met with Levi's surgeon, Dr. John Mack, on Friday and took care of the preop at the same time. The procedure will take 3-4 hours. Just 45 minutes of that is taken with the operation itself. The rest of the time, they will cool his body and the heart/lung machine will take over. Then they'll have to reverse the process and make sure his heart can resume the job. We go in at 6 a.m. Surgery begins at 7:30.
Dr. Mack said while the echocardiograms Levi's cardiologist has ordered over the past several months will give him a general indication of the particulars of his condition, it will be difficult to tell the extent of the damage or his longterm prognosis until he actually opens his chest. His chances of survival are very good—95 percent for patients with tetralogy du fallot. Because this surgery typically is done within the first six months of life, Levi may have some longterm damage due to enlargement of his heart. Lots will also depend on how his body tolerates the surgery and how quickly he recovers.
Following the procedure, Levi will be on a ventilator for up to 24 hours and remain in the pediatric ICU for the duration of his stay, probably around five days. Full recovery will probably take one to six months, although kids usually rebound much faster from open heart surgery than adults.
So, we head into a week that's full of uncertainty, sleepless nights and undoubtedly tears and worry as we see a little boy who has wormed his way into our hearts endure an ordeal that will require him to fight for his life. And so we sweep, fold laundry, clean closets ... things we know how to do, things we can control. The rest we leave to prayers and patience.