Sams chest has cleared nicely over the week, so he is now off oxygen and only needing ventolin randomly through the night to help him clear his chest.
Yesterday something very amazing happened - 4 specialists from 4 teams were in the same room discussing a plan for Sam - a urologist, Infectious Disease, Gastro and Paediatrician as well as our nurse specialist. She made it clear that doing nothing about his ongoing uti's was an option, as Sams quality of life was definitely being affected. It was decided to pop a catheter in his penis and to put him on a 48 hr continuous bladder washout. A blood warming machine was brought up from theatres (used for heart ops), so the 100 mls of saline/ hr would be at body temp. Yesterday they gave him medaz on the ward and tried to pop catheter in, but he needed stronger sedation. So this morning he went to theatre to have a GA and catheter insertion. As this isn't a common procedure it took about 5 hours to find the right attachments and nurses to be trained. He will need to have hourly Bladder drainage checks for next 48 hours.
I am at home with girls - was so nice to have a sleep into own bed and to watch them play netball and hang out. Francis is with Sam and tomorrow we will head up mid morning so we can hang as a family.
The plan is on Monday there will be another procedure - cystoscope - camera in bladder/urethra etc to see if they can can see anything that needs further action to hopefully find some resolution to these ongoing uti's.
We are relieved to have a plan and we hope and pray that we can find a longer term solution for Sam.
I leave you with a very cute photo of when Sam was on oxygen - you will be relieved to know bee has made a full recovery too and is no longer on oxygen - his bladder is fine.