Overall for his first day post Fontan Ted has gone very well. While a pleural effusion (right lung) was found on X-ray this morning followed by some wheezing, he managed to cough quite a bit at lunch time and he then had a huge fluid dump from his pleural drain. Since then we have not heard the wheeze.
He has eaten four grapes and had a few teaspoons of passion fruit yoghurt. There has been a slight increase in his fluid allowance so we do not have to say no quite as much when he begs for a sip of water!
His mood has been low but who can blame the poor little fellow! We have tried to tempt him with sweets and my friend Lisa gave me some Teenage Mutant Ninja Turtle earrings to wear to see if that might cheer him up. So far no smiles. Yet! Might be hard to tell but I’m modelling the Leo and Raf turtles in the photo below!
Teddy had his first wash today. Fair to say he hated it:
As is the way in ICU there is always a lot of balancing of fluid in and out and watching renal and liver function. The doctors and nurses here are exceptional. Here they are having a meeting about Ted’s progress.
Ted has to start Warfarin (Coumadin) today and after very lengthy discussions with his doctors I have consented on the basis that we reassess once a therapeutic dose has been established. My concern is the constant blood tests for my precious boy who really fears needles. I am thankful that his cardiologist was open to discussing it with me this afternoon for an hour to really reach an agreement we are both happy with for Ted.
Fontan completion is not just for people with hlhs like Ted. Other single ventricle conditions result in Fontan surgery, the difference is that post operatively the HLHS patients are by far the trickiest to manage. They tend to have the toughest course so we are praying that Ted bucks that trend.