Much improved

Riley's spirits have come around. Yesterday morning we took him down to the playroom and he started talking more and we even got a few smiles. That seemed to break his shell and he's been much more talkative and happy. He's been playing with his cars and eating. He wants to eat by himself so we move the table over his bed and let him handle his meals on his own. As I type this Riley and Suzanne came by the parent room in the red wagon. He just asked to go for a ride on the elevator.

I stayed overnight with Riley and he got some good sleep. He'd gotten less than four hours sleep in the previous 24 hours. At 4:30am he woke up and said "Daddy, I want to go to the playroom now and see cars."

He has just the one remaining pigtail drain in his left chest. The drainage had come down considerably but yesterday morning he pumped out over 250cc of fluid so there must have been a clot. That happened just after the doctors talked about pulling it. He's still draining a good volume so it won't be coming out today. Doctors are looking for drainage of less than a tenth of what he's putting out now before they consider yanking it. Sometimes the drainage drops slowly, other times it will just come down quickly, so there's no predicting when it will happen. Fortunately this drain is the one thing standing between us going home. Once it's pulled, we'll probably be out within 24 hours. However, the doctors have cautioned us that Fontan patients can sometimes drain for a long time, some have gone for several months. Riley's cardiologist predicts that we'll go home "sometime this weekend or shortly thereafter" but we're not holding our breath. We also know that "real soon" is UCSF code for "before Thanksgiving."

We're thrilled to see the old Riley again and are enjoying hanging out with him, even if he's often uncomfortable. He is on the meds he'll have at home - aspirin, lisinopril, lasix, digoxin and amoxicillin - and he's also getting tylenol with codeine ("tyco") for discomfort. He's not taking anything intravenously but they're keeping the PICC line open and flushed.

There probably won't be much to report until the drain is pulled but we'll keep you all up to date.