Wednesday, March 27, 2013

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.

6 comments:

Anonymous said...

Thats all great news Nicole, so happy to see Sam responding so well, continue to pray for you all, always in my thoughts , big hugs to you all,
Cheryl Gray, xxoo

Maureen Blokland said...

Praise God for all that is going well. I know it must cause you such heartache to see him in pain. Prayers will continue for each & every aspect that your family is enduring.
Will keep Sam particularly in prayer. Bless his little heart!! He's a Mighty Warrior.Love to you All! Grandparents included.

Anonymous said...

Sam is amazing.
It does suck to have to watch our babies go through all this pain and suffering. It sucks that our babies cannot be cured and that we can only have them patched. Having said that it simply amazing to see the love our kids have in there hearts for everyone around them. Our single ventricle heart kids are very special, they have this understanding of how much life is precious even at a tender age. My son is 26yrs old (single ventricle - happy and as healthy as I can hope for - very few issues)
My son has this amazing peace that surrounds him. He thinks badly of on one. They are qualities that are rare. Sam will be the same.
We are blessed mothers.

Nicole Watson said...

Thank you Cheryl, we are looking forward to new steps in the right direction every day.

Nicole Watson said...

It is really hard to see him in pain Marureen but at the same time God seems to be giving me the strength to overcome the emotion invloved with that at the time. It is afterward in the quiet that my heart aches to most for what I see him endure. Thank you for continuing to pray. it's these long days of recovery that are sometimes the hardest.

Nicole Watson said...

Thank you for sharing a little about your amazing son. And yes we are blessed mothers, for a kinder sould than Sam I have never known. I pray that your son and your family continue to enjoy lives full of joy.~Nicole

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