The Plan moving forward
2 October 2022Matthew's bone pain from the osteoporosis and osteonecrosis is worsening and this week he was admitted to hospital with a chest pains. This prompted us to tell the doctor that if he had a cardiac event, he did not want any resuscitation attempts. Turns out that he had a chest infection but if has focussed us to making sure that things are as Matthew wants them.
Matthew had an infusion this week and he will have two more and then we are going to cease with privately funding the Vedolizumab - this drug works SO well on the Crohns but Matthew is in so much pain - even his super duper Tempur mattress hurts him. The bone pain is his hips, spine, knees, shoulders, ankle - it is not good. They have upped his Fentanyl patches to 100mg and he take morphine for the breakthrough pain - but at this level, he doesn't function suffers from nausea (that's the Fentanyl).
Matthew has decided to have Do Not Resuscitate order our in place at the hospital and we will get him a Medical Alert bracelet to confirm this, we will be establishing an Enduring Power of Attorney and our GP is going to start the process for requesting end of life. Matthews Nana is coming from the UK at the end of December and we are going to have a holiday with her - that is his focus. Get the stoma reversed ( at clinic on Tuesday), tidy up loose ends, keep as comfortable as possible and spend a month with my mum. We have a beachfront house booked for January where our family and close friends will have a break.
Its a hard decision for him to make but he is miserable and in agony and there is no hope for any improvement, the over prescribing of prednisone for so many years and severely compromised his bone health to the point where there is no treatment to be offered.
