So the teams yo-yo'd from Thursday to Friday, then we discover there is no plan.... so we wait in hospital over the weekend not very happy with not having a plan..... so our fabulous nurse advocate communicates to all and sundry that leaving our little boy sitting in a bed forgotten (that's what it felt like!) wasn't an option... so today she met with various important people and we now have a plan!
Surgery - not an option right now - nothing to be achieved, could make things worse.
Medicine - adding in an oral medicine that changes the acidity of the urine. To start today with ph testing of the urine to see if he is absorbing the medicine and it is doing the trick.
Practice - to implement bladder wash outs at 12 noon and 4 pm every day. Put in 70 - 100 ml of body temp saline, leave in situ for 15 - 30 mins then drain out.
If the above is done it may keep bacteria at bay. If it doesn't work we also now have a plan for when he needs to be admitted to starship - I know, tis greedy to have 2 plans, but hey ho, we are pleased! If he gets unwell and needs admitting, he will quickly have a GA and a catheter inserted and 24/7 bladder irrigation to commence. Until this is done he will have hourly washouts and IV abx will be started.
All of the above means that today Sam had his catheter taken out and he walked for the first time in 2 weeks. The new meds will hopefully work and we can head home Wed night/Thursday...... oh we do hope so!
Thanks for your prayers for our special boy. He's done well considering he's been stuck in a bed. I had a great weekend with the girls at home - great that we got time together but we had lots of tears and heart felt chats - it's not easy being the sibling of a sick kid..... it was special and important time with them both as they process their feelings and frustrations.
Francis has stayed with Sam for last 4 nights as I just couldn't - was just so tired. But now I have good sleep under my belt and my cold is nearly at bay, tomorrow I will head back in to stay with my boy.
We are thankful for the plans and the skill and persistence of many many people and praying that the new regimes will help enhance his quality of life by keeping him at home!.