Yesterday we went to meet Tim Jones a cardiothoracic surgeon, a really lovely man who explained all about the Fontan Operation.Basically they are going to redirect venous blood from the lower body (through the inferior vena cava) away from the right atrium to the pulmonary artery. there should not be any mixing of oxygenated or deoxygenated blood in the right ventricle.the right ventricle performs the traditional job of the left,supplying the body with oxygenated blood, while the passive systemic venous pressure performs the traditional job of the right, passing deoxygenated blood to the lungs. The surgery should be around 4 hours but have been told not to expect to see him for at least 6. I think it will be the longest 6 hours ever!
he also explained about the complications afterwards with drainage issue and pleural effusions (fluid build up around the lungs) which can mean he may drain longer but after 2 weeks it's routine to do another cardiac catheter to measure the fliud and to make sure the new shunt and fenestration is ok, there is also a chance chylothrax, if there is any chyle leak found he will be on a fat free diet for 6 weeks.
There are plus sides to, i should finally have a Pink little boy who should have much more energy, not be so breathless, better appetite. however this operation is not a cure but is palliative like all the others and we will still never take him for granted.
Unfortunately we haven't got long till he goes in, its a little over 2 weeks(01/12/10), not much time to prepare! but then i don't think I will ever be prepared to hand my son over to the surgical team, it's the hardest thing to do as a Mum (i'm sat here with tears in my eyes). Its a horrid feeling,something you cant describe so much uncertainty. seeing your little one in so much pain and not being able to make any decisions, everything is taken out of your hands, all you can do is hold there's, not being able to give them the cuddle you so much want to because of the lines, tubes, pacing wires and the stenotomy also knowing this is the last operation they can do
apart from transplant.So much to take in and get sorted in very little time.
We may be in for christmas we have been told to prepare for a 4 week stay could be less ( i really hope so!!)or could be 12 weeks or more,but as long as Josh comes out of the operation i don't mind! it will be the best christmas present i could ever wish for.
Well it's time to try and get some sleep, not much of that happening at the moment as you can imagine.least we have Disneyland to enjoy so will post when we come back with pictures.xx
