For the sake of my gadget to the right that has the first two stages of surgeries, I wanted to provide a summarized version of the Fontan to complete the series.
Jack's Norwood was on April 8th, 2009. He was 3 years and about 4 months old. He weighed 26 pounds which was BARELY enough to get him into the operating room. Dr. Kouretas, Jack's surgeon, explained that he would most likely be able to fit the 18 gauge into Jack's chest, and not the 20, which is sufficient to last him through adulthood. However, Jack coming from small parents, and being pretty small
himself, would most likely not need an upgrade.
Jack's surgery lasted about 6-7 hours, mainly because of the scar tissue the surgeons had to work through. Once completed, Jack's inferior vena cava was attached to the pulmonary artery to help oxygenate more blood and improve the blood flow to the lower body, and alleviate the work that his half-heart is having to do to make up for the left.
Once out of surgery, Jack spent 5 days in the PICU. He was doing well his second day, ate a little drank a little, and could respond to things we said. They took all three chest tubes out by day 4. But over the next couple days he started to seem more uncomforta
ble and more restless. He couldn't hold food down and started coughing as though he wanted
to throw up. After a chest x-ray they discovered fluid building in his right side. So on Easter, they re-inserted a chest tube to help drain the fluid. Initially, 100 cc's came out. Which is really alot. About the size of a tennis ball. Over time, it added up to about 450.
We moved up to the Surgical Floor on Monday and began the process to get discharged. I stayed each night with Jack. Waking up every 4 hours for vitals. On Tuesday they pulled the chest tube and we were discharged on Wednesday. Jack went home on Lasix, Aldactone, and Loratab. They upped his daily dose of baby asprin to 1 whole asprin.
We went home with O2, sadly, and they had us on .5 litres. So Jack was tethered to a machine that would suck the oxygen out of the room, compress it, and release it through his tubing. He did well at home. He was excited to be there. But on Monday morning, 5 days after getting home, he woke up and wasn't the same. He didn't want to eat, or move, or talk and he threw up his med's. We took him into Primary's and found his chest x-ray to be VERY disturbing.
Jack had a massive pleural effusion on his right side. (Left: Jack's effusion is on the left, and the right image shows x-ray after tube was insterted. Blue circle is around his lung.) So we immediately readmitted him to the PICU and they inserted another chest tube. Right away, 450 cc's came out. It was unbelievable. He spent that night in the PICU and the next morning we moved up to the floor.
Our room was much nicer this time..which was good because our stay was longer. We spent 6 days on the floor. His tube drainage slowed appropriately. Jack's chest tube ended up draining 800 cc's. His potassium levels were dangerously low- so they tried to give him that medication but it was AWFUL. So they upped his Aldactone to counteract the Lasix, which takes potassium out of the body. It helped.
We were discharged on Saturday (Josh's birthday..) and he came home much happier and more active than the first time. He's on more diuretics to help kep fluid draining, and he is on one full litre of O2. He's been home for a whole day and is acting like his normal self.
(I'll update this after post-op)