Yay.... we are on holiday! We had a big change today as I escaped Starship with Sam in tow headed for home ....and boxes of antibiotics and other supplies!
Tonight he is asleep hooked up to his usual feeds and bags and I have 'til 11:30 pm to stay awake as he needs an IV antibiotic then.... so what better thing to do than update the blog!
The last week he has had a mixed bag of procedures and symptoms needing sorting, but then he bounced back and the only thing keeping him in was his high fluid outputs and antibiotic doses. The first seemed to have been resolved overnight with an increase in loperimide and his outputs dropped. And the antibiotic doses can be given by me, so I have come back home with the recipe and the next ten days will see me responding to my phone when it alarms every 8 hours to remind me to give him his dose.
The logistics of a hospital stay, managing the girls holiday plans and normal life events is quite a juggle and always open to change. On Thursday night I was sitting with the girls and Grandma (Mum) trying to sort out the next days plans.... it was all sorted until another text came in from someone which meant plans needed to change.... the girls are so patient with so many changes, so I reminded them of the adage, 'A change is as good as a holiday'. So we had another 'holiday' right then and there. About 30 mins later I realised there was another piece of the puzzle I hadn't factored in, so I explained to the girls that they were so lucky and it was time for another 'holiday'. I think we had 6 holidays on Thursday night just sitting on our couch - didn't even need to pack a toothbrush! It was a lovely 10 days having Mum/Grandma here and so nice to be able to change plans and stay in hospital, if needed, knowing she was at home.
This coming week Sam has 2 clinics in Starship and the following week a couple more... so we are back on the road to 'normal'.
Tuesday is also the day his cousins come to stay and Sam is SO excited! Aunty Elaine, Uncle Justine, Taylor, Harrison and Mackenzie are coming for a holiday and the medical teams had the pressure from Sam to get him home in time. Literally as we left miscellanous staff were shouting out to Sam, 'Have a great time with Harrison!' - Sam had told all and sundry about the impending visit and that Harrison would be bringing his 'fart piano' - Aunty E please dont disappoint as Sam has visions of a duet with his 'fart gun'.
I am a tad anxious, as the last time I brought Sam home it was only for 20 hours. I really really want Sam to have a break, actually we all need a break. I know I don't see the big picture and I just have to walk each day faithfully.... and that's ok (mostly). I am learning instead of getting frustrated and worried to just pause and pray. I do know God hears every word that I speak and ask of him. As I hugged Sam tonight and prayed for him, I couldn't help but cry as I begged God to please protect Sams body from more infection and to help him be strong. As the tears silently rolled down my face, Sam asked if I was sad... but I answered honestly and said I was a bit sad that he had to be in hospital so much, but mostly they were tears of joy that he was home and tears of thankfulness that God loves him so much and is watching over him.
Thank you Lord that you see every tear that falls from our eyes, every pain in our hearts and you have great plans for each of us. Thank you for the peace that comes with that realisation, even though it makes no sense. Thank you that I can't understand you, for if I could that thought is too terrifying... I need someone bigger, wiser, kinder, more 'everythinger' than me... and that is where true peace and comfort is.