For no real reasons, Candace hasn't seen Sam in two weeks - netball practice, friends sleep over etc, just has meant that between juggling school and weekends, they haven't seen each other. Today I decided to pick Candace up at lunch time and head in to hospital to surprise Sam. They had such a lovely afternoon together - was worth way more than the lost science lesson at school! He was so proud to show her his physio/breathing exercise and kept making sure she was watching. They went for a walk, albeit just to the end of the corridor and back. They cuddled and read books and just had fun.... then they argued over the television channel, so just normal siblings really! Jasmine has spent the last two Saturday nights sleeping over in Starship, to give us a break. Plus she loves hanging out with Sam and Sam thinks it's very fun and cool to hang with her. So we are incredibly proud of our beautiful, fun and kind daughters - Sam just couldn't have better siblings!
Sam has done really well since his chest drain was removed and tomorrow it is time for another change. His mitrofanoff drain will come out of his bladder. This drain has been in since the bladder surgery of 4 weeks ago. It will mean that we now have to manually drain him with a catheter every 2 hours, as his bladder has reduced from being able to hold around 280 mls, down to 80 mls. Childrens' kidneys normally pee out urine at the rate of a minimum 1 ml per kilo per hour.... but Sam has a lot more fluid going through him than a normal child, so Sam is 20 kg, which means he will be producing at least 20 mls an hour. Enough maths - bottom line is we will have to clock watch more than in the past. With each catheterisation there is of course risk of introducing bacteria, but we need to see how his body copes with his new teeny bladder. We are hoping it will reduce his urinary tract infections, as the urine shouldn't be able to pool in floppy sacks of bladder, like they used to - only time will tell. It also means Sam will be able to be more mobile, as he will have one less drain/bag to negotiate as he walks around - hooray!
Sleep well XX