This is my view at 6 am - my little champ playing with cars. He has been such a great boy and is doing well.
The urologist was in last night - a kind genius with a plan!
We hope to escape home on Monday, which is when he will have finished his 5 day course of an IV antibiotic. We will go home on a different regime of bladder washouts - different timings and will also do the washouts with a topical antibiotic included called gentamicin. He is talking to Infectious Disease team about the right cocktail for the washouts then we will have to learn how/what/when to do these. The plan then is to come in to one of his clinics after a period of wellness and do some imaging of his bladder during and after drainage, to see where the pockets of urine are hanging out. Because Sam doesn't pee by the normal route, it shows that his bladder has lost all elasticity, which means when we are manually draining him there could easily be saggy bits that are holding urine that we just can't empty...... And bacteria loves damp warm things to grow in.
It's encouraging to have a plan and we are paying that this will help keep Sam infection free. We are also praying for a miracle and that his bladder will start to function again. Naturally it's not expected, but we have seen enough of Gods goodness and unexpected miracles that we dare to ask, knowing He tan do immeasurably more than we could ever ask or imagine.
I've been staying in all week so am pretty tired, so am switching for the weekend again with Francis. Maybe they can escape a few hours in between drugs and procedures, which would be lovely for all.
Thanks for your prayers and cares.