Day Two Post Fontan-Our Little Warrior

We have been blessed tremendously today and it has been a huge day for all of us, especially Sam. Sam walked to the toilet first thing this morning and has in fact been up and about several times today.  He has also been doing physio and breathing exercises. 
The area around his right lung is draining the most fluid and sometimes causes him so much pain, that it breaks through his pain medication. After consultation with the pain team today his pain relief has been changed from morphine to Fentanyl and we have seen a phenomenal improvement in his pain
management, mental state and his general well being.  His is also on a line of pain relief that is given a top up before he had to do anything too strenuous, just by pressing a button.

He has been awake more than asleep today and is much calmer in himself today even engaging the nurses in conversation at times.  What I wouldn't give right now to see his cheeky smile once again though.

Sam is also on some fluid restriction but he is doing OK with that.  He has not wanted to eat much at all yet.  We are hoping that tomorrow that may improve.

Today at lunch time, he was sedated with Medaz and his pacing wires and sternum drain were removed.  While that was happening I also asked
the nurses to remove any excess tapes and his
ng tube, in an effort to spare him more than he needs to go through.  So now Sam just has his two pleural drains remaining, the right much more troublesome than the left.These two drains will likely remain for some time. His chest x-rays and echo look great and his heart function is still really good. 


We have checked into Ronald McDonald House this afternoon for the next week and we will see what happens after that.  They only had a week available at this stage.

Each day is very hard, on all of us.  But I cannot tell you how humbled and thankful I am that Sam's surgery and recovery to date have been excellent.  A couple of times now when doctors thought there may have been a problem, it just evaporates and his body changes response.  To see him soldier on with his physio today, despite the pain and to actually ask to get out of his bed, made me more than proud. I can't find the word that describes how it made me feel.  I know that he is being enabled by supernatural strength.  Today God reminded me why he is called Sam.

Sam for Samuel, because he will always be mine.

Sam for Samson, because he will have strength and determination that comes from me.

God's promises never fall short.

And do you know what? It sucks that Sam has to endure such things and  that our family has to walk this road, but We will not dwell in pity or negativity.  We are blessed beyond belief.  We know what it is to walk a hard road, so when times are not good or we think life is tough, we look back and realise how amazing each day we are given is.  Each moment is precious, and we give thanks even for the tough ones.