As we sat around our table tonight, all 5 of us, it was loud and fun and did my heart good!
Sam got home around 4pm, with Ange - his trusty carer/teacher/nurse/friend/second Mum. She is truly a total God Send to us, as she hangs with Sam in hospital (when I'm not needed) or takes him to kindergarten (with her Ministry of Ed Teacher Aid hat on). She is a remarkable woman and Sam adores her...... although when I got back to hospital the last couple of afternoons, the first thing Sam said on both days in a hushed voice and serious face was, 'I told Ange to shut up..' and he was staring intently at me to see what I would do! The last few days in hospital were taxing as he was over it and had all manner of tantrums, screaming fits, throwing his cars across the room etc..... so I'm sure it is a mutual joy to the staff on Sams ward that we got out! He has so much done to him, so much interference in his private space and so little choice or control, so we are seeing behaviour typical of high health need kids - they take back a semblance of normality by controlling what they can - their room! So it's all normal, but challenging.
He spent his first 2 hours at home going crazy! He was so excited he was running around, wrestling us, then next minute he's dressed up like a sailor in a hat calling orders to fly the flag, then he's squealing with delight as he's running up and down the hall. It was like he had 2.5 weeks of pent up bed-sitting to get out - and combine that with the girls in hysterics with him and it was quite a cacophony which two tired parents could have done without - I rather fancied a cup of tea by the fire in the quiet... but then we're not 70 (altho' actually that is so what I wanted to do!), and it was too risky as Sam kept coming and leaping at/on me.
After he fell fast asleep in his own bed with his favourite blanket it was bliss to cuddle and chat with Candace then the same with Jasmine.
Then I had to get on and create his new medicine. It is simple enough to do - break a tablet in half, crush it, add in 10 ml of water, mix then discard 5 mls, then draw up remaining 5 mls and pop in his J tube. He is to have this morning and night in the hope that changing the acidity of his urine bacteria will find it harder to grow. We also are doing a 15 minute bladder washout at noon and then a 1 hour washout at 4 - 5pm. It doesn't sound much, but ontop of his usual cares, there will be more clock watching going on and we really want to do this well to give him a good shot of staying uti free for a long while.
It is a bit of a trial, but we are hoping and praying that it will impact greatly so that Sams quality of life is much better.
Ok, off to sleep.... in my own bed.... bliss