Saturday, September 3, 2016

All change - again!

Since I last wrote, Sams condition and treatment options have changed several times! Within a 30 minute period the teams had 2 different ideas... and then these were both vetoed and Sam avoided surgery.  I am saying this to show how complex Sam is and how many people (incredibly talented and clever/kind medical & surgical personnel) are involved in his care - they all have a multitude of experience to draw on and collectively they come up with various plans.

Long story short, It was decided that the teams didn't want Sam to have two G.A.s in a 72 hour period - his lungs take a lot to recover from each G.A and the surgery on Monday really is the priority.  If Sams PICC line (in his right arm) failed/showed signs of infection over the weekend, they would pull it out and be able to keep Sam nutritionally stable by GJ feeds/fluids -so far so good!

On Friday Sam only had one temperature, and I had the job of keeping him as mobile as possible - to keep those lungs working!  With a suspected lung infection brewing, the physios were up encouraging him to do more exercise.  On Friday afternoon I took Sam down to level 3, where he worked in the gym doing some fun games/exercises, with his incentive being a ride in the car!  So with each game Sam would eye up the car and say, 'Are we done yet?'.  Finally we were and Sam donned his helmet and off we went.  With his right arm having a PICC in it, as well as a leur and splint in his hand, he was a 'one hand on the steering wheel cruising look' - very fun to take him out and about around the floor.  Sam is motivated easily by any rewards involving cars!


Today he had a great day!  Another 'long story short', but my car broke down at the airport last night (going to pick up Candace) and the AA guy couldn't fix it, so I left it there for the night.  Today Francis and Sam (complete with his AA kit) and a friend, went to try again to kick some life into the old girl.  A couple of hours later and another break down at some lights, Sam got home absolutely amped!  The silver lining to the hassle of a broken car, was that Sam loved it!  I sent Sam some photos of 'Rhonda the Honda' last night being attended by the AA and when I spoke to Sam this morning he said, 'Why didn't you call me Mum, I have jumper leads'.  He said it in such a 'dhuh' kind of 'you missed the obvious Mum' voice - very cute!  Today when I asked him if he helped fix 'Rhonda' and he looked at me like my teenagers do and said with another 'dhuh' voice, 'Mum ... you know my jumper leads aren't real!'

Tomorrow the plan is that Sam can escape hospital for a few hours and he may head to church with Francis to celebrate Fathers Day -  church is having a morning of all things 'blokie' - cars, racing, bbq...  I will head back in to stay with Sam on Sunday night as he is on the surgical list first thing on Monday.

Monday will be a big day for Sam.  Sam is constantly chatting about how 'scared' he is to go to surgery.  He really gets anxious in the pre-op room and is so aware that he is about to be put to sleep. Again, everyone works hard at keeping him calm and are 'kid friendly', but Sam is aware of what's going on and can see through it - he is too clever!  So we have been talking about this and I know that Monday will be another challenge for him. 

Please pray for the surgical team on Monday - I get the impression it isn't a straight forward surgery - they are trying to find the 'leak' to stop fluid from his lymphatic system spilling into his chest cavity. They think they have seen on images a possible area, but it is always different and challenging when dealing with reality.  They will also take out his current PICC and put another one in. Sam is first on the list, so maybe around 8 or 9 ish.

The girls are asking when Sam will get home - it's always a good question, but I'm afraid giving them a date is just not honest.  We really have no clue.... I am guessing he will be in at least until the end of this week, if all goes well on Monday.... but the only true answer is 'how long is a piece of string?'.

It was lovely to see the three of them giggling and hanging out this afternoon - Sam was showing us the 'birdie dance' and wiggling his bottom and falling about laughing. Having not had a boy before, we have stumbled upon the 'farty bottom' stage - the girls didn't go through this, but many a parent has told me this is quite normal amongst 7 - 9 year old boys (some have said it lasts til adulthood!). Sam finds it hilarious to mention 'fart' or 'bottom' in any context/conversation and then fall about laughing - the girls stare at him and roll their eyes, but it seems nothing deters him from this route of humour... so we are just going with it and wondering how long this phase will last... although there is always the potential that the next phase is worse (I don't have the courage to google it!).

Sam is happy, but as we saw last week, the difference of a few hours in his life is quite staggering.  I will update on Monday evening once we have more info post op. 

Enjoy being with your loved ones over the weekend.

X Shirley

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