So that’s the story to date – congratulations if you’ve read it all! At the moment I’m not writing this with the purpose of it being read. Its more of a cathartic experience for me. I also plan this will be a way of keeping people up to date in the future when/if necessary.
Long term Samuel needs more surgery. Eventually he will need an aortic valve replacement as his valve won’t grow with him. It will either become blocked or will become too leaky with back flow (he currently has a little of both). The doctors have explained that they want him to be as old as possible to do the surgery as it has less risks the older he is. At present that would mean open heart surgery but we have been told that as medicine advances that might not be the case when the time comes for Samuel.
A time frame on surgery is also not possible at the moment. His last clinic letter was really positive and they feel he will get ‘good longevity’ from his valve. As an obsessive planner I really am struggling with the fact we have no idea when his operation will be. The doctors have said it may be in the next year or he might be a teenager – we just don’t know. Part of me wishes we could get it over and done with but another part of me is petrified at the thought of putting him through such a massive operation. The replacement valve also has a lifespan (approx 20 years) so potentially he will need further replacements.
Six weeks on from this Samuel is doing brilliantly. He’s putting on weight well and is very alert and happy. I’ve politely told my health visitor where to go as her input was anything but positive. I feel the dust is settling and I’m not sitting crying alone at night when I feed him. I’ve also managed to stop worrying that I’m going to wake up and find him dead one morning. Very macabre but that’s how my mind has been working in the last few weeks. Perhaps the citalopram is doing its job!