Saturday, June 29, 2013

Sam's Cardiac Review-Three Months Post Fontan

Yesterday we travelled to the Mater Hospital in Brisbane for Sam's cardiac review. We were relatively relaxed in the lead up, as Sam has been so well and has looked so good post surgery. Sam on the other hand, was not so relaxed about his check up anymore after his surgery in March. Hospitals are all too fresh in his mind.
The first part of the review was gong well until they had to the ECG and that is when he just lost the plot. There was no way anyone was putting anything sticky on him, as anything that is sticky must come off.  The ECG stickers have a really stretchy kind of adhesive on them and they are uncomfortable to take off but definitely not painful. However Sam's memories of tapes, tegaderm and dressings after surgery have made him very fearful, and his anxiety goes through the roof.  He will NOT listen to any reason when he is in that place, and that is where he got to yesterday. If he is upset like this and anyone tries to negotiate or bribe or suggest anything he will not listen at all.
So after that great upset we then had to try and get a good blood pressure reading and oxygen saturation. After some time, they were all good, his sats still sitting on 98%.
His clinical check up with Dr Gooi went smoothly and then on to the echo. Sam was very good for the echo and stayed very still for a long time as they also had to check his lungs for fluid in addition to all of his heart.
I became very concerned when the sonographer went very quiet and spent quite some time searching for something.  When he excused himself to go and get Alex (Sam's cardiologist) I prayed over and over that all would be well. When they returned together I found out that the sonographer was unable to locate Sam's pulmonary arteries, either of them! Of course I know Sam has pulmonary arteries and they are functioning well otherwise he would not look so good. Talk about knowing how to completely freak out a heart mum! They should be schooled to never go silent and then leave the room without offering explanation.
The result of the echo was that Sam's lungs are completely clear, meaning that he has now ceased to need Lasix. Wooohooo!
His heart function is great. The right ventricle is pumping nicely, the valve still only has minimal regurgitation (no change), and his aortic arch is in great shape. The pulmonary arteries are of good size and Aspirin and Enalapril are the only medications he will need to remain on. Our next review will be in 6 months and soon after that we should go to only having one a year appointments. How exciting will that be!
We have brought home some of the ECG sticker to play with at home and try and desensitise over time his aversion to that testing. We are also going to try and do some local occupational therapy to help with his fear and anxiety in regard to needles, blood tests and ECG.
I thank God for Sam's continued good health and look forward to the next days, months, and years that we believe will be the best of God's gifts yet.
Sam was happy to go back to the hospital as long as we didn't have to stay and we didn't have to visit the ward.

He was trying so hard to be brave in this photo. His croc was there to help protect him. Sam's awareness level and anxiety is very high after his surgery.

The echo took a long time and in the end he nearly fell asleep, but refused when I told him he could. He was keeping both eyes open.

Monday, June 24, 2013

Measuring Wealth

When we moved to Highfields we know God was bringing us home, for a time of replenishing. He spoke to us about moving back home and restoring what had been lost to us. We have been here a month now and we see his providence in so many ways. Yes, in tangible ways by paying for our relocation, providing Don with a great job, opening up a whole new world for Avon for me, placing Jack in a school with a dynamic and focused teacher, introducing us to a new church family, and seeing Sam settle and regain his confidence following his surgery only a few short months ago. Honestly, I could go on and on, but you get the picture. This scripture has been pivotal to me in the past two weeks. It is in complete retrospect to what the world teaches us.

The result of humility and the fear of the Lord is wealth, honour and life.(Prov. 22:4)

When I wake in the morning, the words resound through my mind and settle gently into my heart like a renewing gift, a gentle reminder each day that our life here is God's gift and it is good.

With what we have endured in recent years in regard to our travels with MAF, moving from home to home, town to town, state to state, Sam's surgery, and Don's work; this promise from God is like a refreshing drink of water to us. It is reviving our parched souls after a long journey.  Everything is beautiful to us right now; being closer to family, the weather, our new home, new friends, because we know we are in the place where God's blessing resides. And so just as our Pittsworth home was called 'God's Rest', this place is 'God's Blessing'.

We have not despised any part of our journey in fact we have relished in the people we have met and the places we have lived. It was not a fickle journey but one of obedience and love. 

We travel to Brisbane on Friday for Sam's heart review with his cardiologist. Please pray with us for a safe trip and an outstanding outcome for Sam. That his heart shall be strong and endure for the longest time.
Rugged up and happy for Jack's first athletics day. He missed last year's due to us moving around.

Jack came 2nd in his sprint, though they only give participation ribbons in the lower years.

Sam joins in hopscotch at Jack's school.

Jack running in his relay where he caught up where his team was lagging.

The new book I contributed to is now released and I received my author copies from the UK.

Sam is just growing up so much and the boys have only grown closer in our travels.

We are rediscovering gardening. Oh, how I have missed my garden.

Sunday, June 9, 2013

The Game Changer

Sam turned to me, 'I fish (wish) I could go play tiggy with those kids.'
He stared longingly at Jack running full speed with the other year one kids before school. Like a bunch of wild lorikeets the kids were tearing down the wooden ramps hanging from the bars, sprinting across the school yard in the icy morning air.

'I know honey, but they are really rough and a bit too fast for you. Maybe you can play with Jack at home later.' My heart ached for him, because of the desire he had to play. I worried for his safety. Inside I agonised about him being hurt or pushed over, treated unfairly because he can not run so fast. Kids can be ruthless when being competitive. We are new to the school the kids don't know Sam, don't know about his heart. I began to think forward to him starting Prep school next year and how he would go with all of the other kids. As my heart felt his sorrow, I suddenly realised he no longer stood beside me.
Sam was sprinting (in his own special way) down the ramp to join in the fray and I stood rooted to the spot forcing myself not to call out. He had made the decision and every part of the Mummy in me wanted to stop him. In the raucous din  I heard Holy Spirit whisper 'No, let him go'.

In the next few minutes I witnessed the most amazing transformation. The whole group of 10 or more year ones welcomed him, and let him chase them.  Then they completely changed their game so that Sam could join in. They would draw close to him and then dart away as he roared at them like a T-Rex.  And I watched him run and laugh and never stop until the bell rang for class to start. Instead of being the outsider, the one struggling to keep up, he became the centre of their game. His own little personality and his determination to play changed the game for good.

We need to do that to you know. Though we are afraid, we need to run on in reaching for what God has planned out for us. And part of that is never being the same again, seeing the game changed because we dared to trust for bigger things.

Always learning, always growing each day in every way.

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