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.

Catheter Countdown

Picture source

On this day in a weeks time Sam will be having his cardiac catheter.  Then we will finally know what is going on with his heart in more detail.  It is then that we will know that he is a candidate for the Fontan operation.  You see not everyone with Sam's heart condition is a candidate.  If the pressures in the heart are too high then the Fontan is not an option. So Sam's heart has to be within certain limits for the operation to be an option, and be a success.  It is only after his catheter and after the results are reviewed on Friday next week, that we will have some indication when the surgery will go ahead.  Many people keep asking when the surgery is, but the reality of the situation is that we don't know.

Once we have come through the valley of catheterisation, we then come to the foot of the looming mountain of Fontan.  At least this is our aim.  If not we could be slung into vast space into wait and heart transplant land. (Sorry, I need to make light of this, otherwise it could eat you up inside).

The wait makes me weary.  The planning has to be done, but  most of the time I procrastinate, finding anything to do but what I know I must.  I spend some time each day with God just chilling out and listening to some music.  It is when I feel him nearest and as I close my eyes for just a few minutes I feel His peace settle over me and I can then carry that peace with me through the rest of the day.  I know God is always with me but these times are special to me.

I feel so guilty sometimes just wanting for this time to come and go, when I know Sam has to endure more pain.  What kind of mother thinks like that?  Shouldn't I want to be waiting as long as possible? But I don't, we have been waiting since Sam's diagnosis before birth knowing that this day was coming at some point, hoping that it never would.  I remember meeting families with their children in hospital having had the Fontan procedure when Sam was only having his first surgery as a baby and thinking how blessed they were to be on that end of the three stage procedure than where we were.  Now, I don't know what I feel, definitely not blessed in this regard. 

Sam is impatient he just wants to go and get his test and operation over and done with so he can go back to Kindy and come back and see Jack. In his words:

I'm just gonna say, Hi Dr Gooi, I'm here to have my test heart. And then I will go to hopstibal and then I will come home and say bye.  Dr Gooi is funny.  And I will have to wear a maks (mask) and I will go to sleep'

Even after the Fontan, Sam is not fixed.  His heart cannot be fixed with human hands.  HLHS is not a curable condition.  They just try to make the heart last as long as they can.  Some hearts respond really well to sugery, others do not.  We don't even want to go there yet.

This blog can be pretty messed up some times, but that's because my life is pretty messed up in many regards.  I am not trying to present some image of a woman who's got it all together, because I'm pretty much as far from that as you can get. But...I do know that God cares for me and my family and I can speak of his miracles and His love for us, even in our disrepair. And when He gives His word he never goes back on it. 

God and Family

 

Family and God

I just can't imagine how our lives would look if those two were ever separated. I'm not even going to try.

Imagine for a moment...

Imagine for a moment...that your child has a disease that cannot be healed or restored by human hands, yet. 

Imagine for a moment...watching your child a little more carefully than you usually would, being careful to protect them from further harm, because they do not deserve any more pain. But in the same breath forcing yourself to let them live freely and not be inhibited by what they cannot do, instead empowered by what they can do.

Imagine for a moment...giving away any dreams you had for your own career or life.  Putting aside your own ambitions and having your path redirected to a place that you wouldn't wish on any other human being.  The place where you have to watch your child endure that which you would gladly carry yourself in their stead.

Imagine for a moment...having the reality of pondering on whether your child will become a young man or woman. As many of their young friends do not have the opportunity and lose the battle this side of heaven.

Then

Imagine for a moment...that God truly is God and is real beyond your wildest imaginings.

Imagine for a moment...that God loves you and gave you promise for your son.  The promise of a future that is steadfast and true. A promise in complete polar opposite of your worst fears.

Imagine for a moment...that you find that the life that has been mapped out for you, though painful, is more fulfilling and life changing than what you ever could have planned.


The place you have just imagined is where I live. 

A Warm Christmas

Christmas was warm in more ways than one this year.

Warmth came from visiting our family in Mount Isa.  My heart was warmed to see them after so many years and when we met two of their beautiful children whom we had never met.  And to laugh and chat and have fun together. 

Warmth came from the intense heat of the weather and we sought relief and fun in many ways including water sliding, the river and air conditioning. 

We found warmth in smiles, cuddles and new found relationships with cousins who are now friends after so many years of simply speaking on the phone.  The boys now feel linked to their cousins in  new and special way.

Warmth came from watching my children enjoy the Christmas season hearts filled with excitement, giving and receiving gifts and learning new things. Making memories to keep close forever. These memories will serve us well and we shall pack them into our luggage when Sam has to go to hospital in February.

Maybe that is part of why Christmas was such a special time for me. I wanted to leave all of what is going to happen in this new year with Sam's surgery behind and enjoy our time together.  Each moment is precious, the smiles, the hugs, the squeals of excitement, because I do not and cannot hold time too tightly in my fist.  Not one of us know how much time we have here and so our family has learned not to take any of those moments for granted.  This is amplified due to Sam's upcoming surgery. People tell me not to worry, and they are right.  They tell me 'Sam is strong' and he will do great, and he may.  But in essence we have no control over these things.  The only things that is sure to me and never changes is God.  And so I cling to Him and His promises.  And I thank God for each of you, that He has given me each of you to love, encourage ad pray.

So I hope you had an exceptionally warm Christmas, so that when cold, grey days some, the light of that warmth will glow strong in your heart.

Who Do You Work For?

As some of you know Sam's Heart was shortlisted for the CALEB Writers Awards through Omega Writers.  It was such an exciting time and a surprise that I was grateful for.  Two days ago I found out that although the my book made the short list, it did not make the finals.  As my eyes scanned the emailed list, I hardly dared to hope it would be there.  Many of my other newly found writing friends appeared on the list and I quietly celebrated for them, as disappointment came knocking at my heart. 

Disappointment is a strange feeling.  I was actually quite surprised to find it entering my heart.  God was very quick to speak to me regarding my feelings.


Don't be disappointed. Your writing is not judged by these people, but by me.  I asked you to write the book, and it is doing that which I set out to complete. I always complete what I begin.  Your true value is not found here in the opinions of others, it is found in your love for me and your obedience to me.  You cannot yet see the fruit of your obedience, but one day you will see the hearts touched and lives changed by your work.  Be prepared  to be blessed, because your treasure is laid up in heaven.  Each word of truth that you write brings glory to my name.  Write, smile and praise me,  I love you more than anyone else ever will.

The next morning I received a lovely email from a friend, confirming everything that God had spoken the night before.  He really works in the most kind-hearted and intimate ways.

My disappointment stems from school days, when I loved to be the best at everything, loved to achieve and win all the awards, and I did many times.  However my reason for living has changed much since then, and God is still continuing his work to change my heart.  Little by little exposing the sin that hides there, as much as I can endure each time. Because as he spoke above:

What God begins he completes.  When God makes a promise to transform your life, he will see it through to finality.

And I for one, am so thankful for his patience and love.

And so now, I look forward to going to the awards dinner in November, and encouraging and supporting my writing friends, who's hard work is also touching many hearts.  Bring on the good times!

Put On Your Tiara

This post is a little more in depth than my others, but worth the read if you will stay with me :)

You know how it is.  God gives you a scripture and it is burned like a brand upon your heart and mind. I am not talking about a memory verse, but one that has been planted in your spirit by God.  As you go about the day to day, the same words keep coming to you.  You face a challenge or difficulty, and the words literally jump up from your heart and jolt your brain.  That scripture for me for the last 6 months has been Matthew 6:33.

Seek the Kingdom of God above all else, and live righteously, and he will give you everything you need. (Matthew 6:33)

This word from God for me is amazing.  Any time I start to doubt in our future, Sam's healing, our finances, the boy's behaviour,  or my relationships with friends and family, this is God's answer.  It is a rock solid promise and I hold onto it with everything I've got.  When I speak it out loud I feel the fear and insecurity pick up tail and run.  I love that it affirms who God is, and the simplicity of walking in the ways of Jesus.

Today I did some further research into the original meanings of the words before they were translated.  I don't often do this but I was prompted.  What I discovered both delighted me and challenged me.

Seek the Kingdom of God above all else...

Seek means to look for; (latin word quaerite)

Kingdom of God means; kingly government, royal authority, kingship and royalty (latin word regnum)

all else means; first (latin word primus)

I always thought seeking the Kingdom of God meant to seek after the things of God.  These words just made the meaning all the more richer. We are to be governed by the King, we are to exercise royal authority and act as royalty to seek God.  This means that when troubles come we don't slink back and hide in a corner, we stand upright, lift our eyes to God and proclaim his government over earth, and over our problems.  We bring the Kingdom down to touch earth!  How awesome is this? I now love latin!  This is where we speak our faith.

...and live righteously...

The latin words here mean to follow all of Gods laws, to walk in His ways (Latin words et iustitiam eius.).  This is where we do our faith.  And remember faith without works is dead (James 2:26)

...and he will give you...

The latin for these words was my favourite discovery.  The word adicientur means to throw, cast to, fling at, put, put to or set near.  I literally had to stop myself laughing to type this.  God is saying speak and live your faith in Me and I will pitch what you need to you with great haste and urgency.  I love this I can almost see God dispatching his angels with great haste to aid his royal children upon the earth.  I also had the very comical picture of Jesus rolling up his sleeve, and pitching his help down to us from Heaven, but that is just my imagination.  I can't help it if God made me weird! :)

...everything you need.

omnia, means all and every, and the words 'you need' come from the latin vobis which is also comical.  It is a rhetorical kind of phrase meaning "Who knows more than you? I do."  This is where God tells us that He knows what we need and he affirms that He is in control.  I love this word and all that is implies. 

I wonder if you have a verse that God has given you for a special season of your life?  Please share if you would like.  I would love to hear from you.  I hope this hasn't been too heavy.  The colourful language and the rich beauty and fullness it adds to God's promise to me, was something I wanted to share with you.