Hospital queues

Today we are spending the day in hospital to find out what is happening to Abbeys gastro system. Here we wait for the VNS to be turned off before heading to the procedure room. Abbey will be going under general anaesthetic. I have started a newborn wool cover for cloth nappies. Let’s see how much I get done! I’ll post through out the day as we advance along the waiting queues.

A Last Step

There are many last steps on the palliative care journey. Today we finalised the resuscitation plan. Our end of life wishes for Abbey are now formal. This paperwork will be distributed around the key people, places and departments. We are hoping this is a smooth process moving forward.

And yes, it’s a heavy emotional burden. It takes time to process and feel comfortable with.

Today there were many chats and changes regarding Abbey’s medical needs. New medications for pain relief, stomach investigations and seizure management. We will continue on with the Marijuana oil trials as it’s still more positive and her quality of life is higher.

Life continues on. We continue to strive for our family motto of fun, dignity and compassion.