After the last few days it has become apparent that Charlotte was not going to come out of anaesthetic in any appropriate or comfortable manner. Each day she has continued to suffer from emergence delirium and it has got a little worse and longer each day. She is so violent and dangerous to me and herself that Monday was the final straw. Left somewhat to my own devices and left to tackle the episode on the ward I really did feel broken. I was devastated at the state she is in and exhausted with dealing with it on my own. I was so upset and angry when I got home that I drafted a long letter identifying the concerns that Rod and I had with Charlotte’s condition and requested a medical and clinical plan moving forward, in order for us to survive radiation every day until Christmas. She has a shunt, not long had a craniotomy and a central line hanging from her chest and here she is thrashing around violently for long periods of time.

Charlotte’s clinical nurse consultant and the anaesthetic doctors have come together to observe Charlotte, work on the levels of anaesthesia and doses administered and to devise a more appropriate plan for her recovery. She has no recollection of the episode but is physically exhausted on top of having radiation too. Rod has been in for two days to give me some respite and he has found the whole event exhausting and upsetting. I don’t think he could understand how I had dealt with it as Charlie is so strong and angry when she is going through the delirium, even he struggles The anaesthetic doctors remained to observe her waking and agreed that she not only has emergence delirium but frontal lobe disturbance which also makes it difficult for Charlotte to moderate her moods and behaviour emerging from anaesthetic. A double whammy! Charlotte doesn’t do things by half measures!!!

Each day the doctors are working on ways of tweaking the infusion of drugs, the medication and recovery process. Ultimately, Charlotte is doing so badly that she has to be sedated to get her through the delirium. Today, not even that worked and a double dose of sedation had to be administered. I am still trying to get my head around the predicament that we find ourselves in with Charlotte. The poor kid has already dealt with so much and now this too. It will be a very long road to Christmas Eve.

Love,

Beck and Rod xo