Solving the Puzzle

Solving the Puzzle in Boston

Progress Update September

Further to Tony’s admission in Nelson hospital, he was moved to the medical ward and stayed there for 8 days. He was discharged with home oxygen and a slowly decreasing dose of Prednisone. His infection levels came right down, back to the point of normal along with his Kidney function.

Tony was comfortably off the Airvo by the time he was moved to the medical ward, and started to do small amounts of exercise which he was maintaining and slowly increasing when he came home.

One of the drugs that has been discussed amongst the DC specialists and that some DC patients are using in other parts of the world has been suggested for Tony. This drug is one that Tony’s GP knows of and the Nelson respiratory specialist too, but was told this is isn’t available in NZ.

After he came home he started to have reactions that we all thought was because of Prednisone he was taking. He had a appointment booked with his respiratory specialist from Wellington for the 19.09.16 in Nelson. After discussing his symptoms with her, she immediately recommended lowering the dose and monitoring his symptoms as they want to keep him on a low dose at this stage. The Wellington specialist has since then put in an application to Pharmac to see if he can get the drug talked about overseas granted on special funding as a special case in NZ.

The following Monday the 26.09.16 Tony ended back up in hospital, the Dr came to the home and organised for him to go into hospital. Unfortunately after the Dr left he deteriorated further and we had to call an ambulance to give him stronger oxygen and take him in. Thank goodness this turned out to be a milder chest infection this time and he was given one dose of iv antibiotics and the Prednisone was put back up as it was decided Prednisone was not the cause of the reaction. He was admitted to the medical ward and put on oral antibiotics and monitored for another 24 hours before being discharged.

The antibiotics have now been extended another 2 weeks and he is showing improvement. He is still needing a lot of oxygen at home, but we are seeing slow improvement all the time.

Thank you so much everyone for your wonderful support, prayers, meals etc!

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