Today was another bad day. I had to let Prof Froehlich know that there will be no Ketamine Infusion tomorrow. On the one side I am so disappointed because maybe, just maybe, it may have worked. On the other hand I am relieved. Five hours under anaesthetic would be a killer on her spine and intestines. Third last operation Vic developed a skull fracture from lying on an operation table for 4.5 hours. This procedure would have been done without her normal theatre team who understands her Osteogenesis and her frail condition. They understand and know she will fracture on the operating table if not handled with the utmost care.
I really feel we are in an absolute no win situation. Not even the pain control procedures can be done without causing further harm to her little body.
Michael Wolff of the New York Magazine writes “The traditional exits, of a sudden heart attack, of dying in one’s sleep, of unreasonably dropping dead in the street, of even a terminal illness, are now exotic ways of going. The longer you live, the longer it will take to die,” he writes. “Part of the advance in life expectancy is that we have technologically inhibited the ultimate event.”
Now technology has finally deserted Vic.
The boys are starting exams this week. Jared has worked so hard with Rene on his maths this weekend. I hope they will do well. Poor babies have so much to cope with – they cannot still cope with poor marks and the consequences of it.
On the 27th Jared will undergo major surgery. Poor baby has a reflux problem that has caused third degree burns to the oesophagus and he also has a massive hernia. The doctor says there has been “cell changes” so I hope and pray he will be okay.
In this house we seem to go from one heartache to the next.
Tomorrow is another day I suppose.