Well Sam didn't have a great 36 hours - he was still mostly happy but sore upon peeing and rather round. As a family we had a great get-away for a long weekend with great friends, sun and beach..... was so nice to get out of Auckland and relax, but we returned knowing that Sam hadn't had a great day.
Today Francis took Sam in for his ultrasound appointment and sadly it showed that his bladder was holding about 1 litre of fluid and his right kidney was about 5cm larger than his previous scan. After discussion with the urinary surgeon it was decided that his redundant vesicostomy (surgically created hole at the bottom of his tummy/above his penis) needs to be re-opened urgently. So Francis returned tonight with Sam, collected some stuff and has gone back in to be processed through CED - the emergency department. They will probably insert a catheter overnight, so he is draining, until surgery has been scheduled.
This is aside from the surgery we're waiting on for his CVL needing adjusting back into the main artery - so I quickly got in touch with the urinary surgeon this afternoon to explain Sam's other issues/need for surgery to see if they can't save Sam another anesthetic by doing 2 operations in tandem.... it might be totally impractical, but with Sam being so complex they need all the information to make the best call.
So the house is feeling very quiet - girls are in bed and my men aren't here. It seems very strange again, especially after so long at home. I'm disappointed, as we were starting to toilet train Sam as he seemed to be having good bladder control, but with a vesicostomy this won't be possible - it means he will need to be in a nappy for as long as he has a vesicostomy. This makes me sad as he is growing up and interacting at kindergarten. As we make plans for school, his differences are becoming more apparent. I'm also feeling guilty that I didn't spot this earlier and his kidney is damaged due to the extra pressure. I knew something wasn't quite right deep in my gut (mothers intuition) but I suppressed it as Sam is so happy all the time and I wanted to hope it would be ok and it would all just right itself. So tonight my heart is sad as I grieve for Sam again - it's like a living grief - grieving for the bits that are missing, yet so grateful and delighted with what we have. The tears are part of the process that help me not implode - I cry my heart to God - the disappointments, the sadness, the guilt, the frustration and anger - knowing He listens and understands. Then I wipe away the tears and carry on, conscious that my feelings are only mine and I'm not the one having to face the surgery. This challenge is for Sam. Our dear wee boy whose body is to be necessarily assaulted again. For him my tears flow.
'Dear Lord, please help Sam tonight - help him to cope with the pain his bladder and kidney is causing him and please help them both to drain. Please help Francis as he cares for him and please help the many teams make the right decisions about Sams care. Please continue to give Sam courage to face tomorrow.