Thursday, September 15, 2016

Disappointing progress

Sam has been recovering from this operation pretty well, although his frustration of being still in hospital (into 4th month!) is starting to show!  He is still on oxygen and still has a chest drain in. He is on 24 hour meds (octreotide again) to slow down the production of the chyle (chest fluid).  Yes, sadly it seems there is still a bit of a leak... although it's not totally certain if more fluid is created/leaks because of the presence of the chest drain.... chicken'n'egg thing going on again in case you hadn't spotted it.

Sam has been grumpy and fed up more than usual.  The surgical site has been very painful, but pain relief has it under control. He has also had a night of sore tummy/vomiting due to introduction of the monogen GJ feed again.

Tonight when the girls and I called Sam to say goodnight, he was very excited about the thought of multiple visits tomorrow - a morning visit of a friend of mine (with coffee!!), then his 4 cousins and Aunty Janice coming in to visit him in the afternoon.  It was nice to hear him squealing down the phone and so happy.  The days are long and very dull - only so many weeks of repeat episodes of Mickey Mouse Clubhouse can keep you amused!

'Candace is much more amazing than Jasmine'.  I leave the computer for 2 seconds and the above happened - Just thought I may as well leave it in and I'm sure you can figure out the author!

The teams are busy figuring out how to get calories in to him, balanced with 'not too many calories' to help the chest heal and slow down production of chylos..... one surgeon mentioned it should just be a 'few days'.  This reminded me of the time they said that 6 weeks ago and I think I sighed audibly.   We are thinking we will be in for another slow long while....... sigh....... but we are conscious all are working hard and we have to be patient. This week I have been reading about a very patient guy called Joseph in the bible - yes the one with the multi-coloured coat.  He got a bad wrap - treated really badly, betrayed by family, then jailed for something he didn't do.  It took around 23 years for the truth to come out!  As I read it, I was amazed that Joseph kept a great attitude the whole time. God watched over him and even the horrible things that happened, happened for a reason, because God saw the big picture and years later, because of what had happened and because Joseph had proven he was trustworthy, had proven his integrity and shown his great attitude, Joseph was able to help lead a whole country through a major crises. So my 'take home' is:  'Patience is not just passing time, but that it is waiting with a good attitude', knowing that God has Sam and my families 'big picture'.  Harder said than done, but then it's not up to me to manufacture a good attitude but to ask God to help me - I'm human and frankly when I'm tired and fed up, I don't naturally err on the side of patience!  I run out of determination, willing, kindness etc... but God doesn't run out of what we need and he knows even before we ask.... and I am asking cos I need him.  Just can't do it on my own.

Heading to bed tired, but looking forward to tomorrow hanging with my boy, catching up with friends and family in room 6, Ward 24b (THE party zone tomorrow!)  If you would like to ever be a part of Sams party zone... you are most welcome.... just text/FB message/email to make sure all is good for visitors and to give time for Sam to get armed with his fart gun!

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