Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...
SAMUEL - COMPLETE IN GOD
Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS happening....to us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Wednesday, June 9, 2010

ANOTHER CONQUEST FOR THE CONQUEROR

I can hardly believe that it is almost a full week since Sam's op. My weeks of anxiety and emotional trauma at, what I had convinced myself to believe up until two days before the op, would be such an incredibly frightening experience. And? Of course there was no incredibly frightening experience. The truth? There is nothing...ABSOLUTELY NOTHING...I can think of that would have made the experience any smoother or easier to handle. Sam was a little edgy during the hour and a half before the op as it meant he had to wake up and travel to the hospital without having his "wake-up" feed. But once we got to Vincent Pallotti we were admitted literally within 5 minutes (even though we were actually half an hour late), and twenty minutes later we were already on our way into theatre, the pre-op observations, etc all taken care of by the wonderful nursing staff.

I went into the theatre with Sam, who sat on my lap, and after just the second line of "Wheels on the bus" Sam was asleep. An hour and a bit later Dr Burke (the anaesthesioligist) came to call me as Sam was in the recovery room and waking up and they told me to actually climb into the cot with him and hold him as he started rousing. The first hour and a bit after he woke up was quite difficult as obviously Sam was hugely disorientated, his throat became dry from all the crying and he started gagging and wheezing, but we gave him some sugar water and then he settled down with his bottle (albeit still half asleep). Sam was also given a local anaesthetic in both hands which lasted ten hours after the op to ease whatever pain he might have.

We completely credit our awesome and wonderful God with the ease and grace at which Sam went through his operation, but still have to acknowledge the most amazing, caring and stunning doctors and nurses that were responsible for caring for Sam for those twenty-four hours. I mean who ever heard of an anaesthetist going to check on one of their six patients for that morning, down in high care...even once? Well, Dr Spencer Burke checked on Sam THREE TIMES in the twenty-four hours he was in high-care, as did the paediatrician we had only met the day before the operation, Dr Carl Wicht. And of course, a job well done to Dr Steve Carter who not only did an amazing job on Sam's thumbs but indulged me yesterday when I started worrying that the gauze around Sam's hands was becoming too damp due to his palmar hyperhidrosis (excessive handsweating) and insisted we bring Sam in so that he could have a look and reassured me that all was well and we needn't worry.

So, as I mentioned, Sam stayed in high-care overnight on Thursday evening just to be monitored because of his OSA (Obstructive Sleep Apnoea) and the other related concerns with RTS and anaesthetic, but all went well and he had a pretty peaceful night even with eight really short apnoea's which only lasted 10 seconds each time and didn't even cause him to desat. One of the nurses even managed to give him some meds at about 1am in this mouth, with a syringe....and he just slept and swallowed right through it...not a peep of a sound. So Friday morning we were okayed to go home, which was great! And of course Mr de Beer Jnr is extremely spoilt, even more so now than before, as he has absolutely NO downtime during the day (downtime being any micro-second which might be spent anywhere else other than on mine or Grampa's or Luke's arm) Although he is becoming incredibly frustrated with not being able to use his hands, Sam doesn't seem to be in any kind of pain and is most definitely taking full advantage of his condition - clever chap.

I have to brag about what a brave little boy this conqueror is though...within hours of the operation he was smiling and chatting to anyone who happened to wander into his ward and was really such an absolute pleasure that we were asked if he was always so "joyful" and you know what? When we really sit and think about, even through his occasional hysteria-episodes with therapy, etc and even though I spend hours upon hours each day singing Wheels-on-the-Bus (I must at some stage post about the many variations I have had to create in order to make the song last longer) to get him to sleep, eat, calm, etc he really, genuinely is a little boy that is so completely filled with JOY...our little Joyful Smurf!

About half an hour after coming out of recovery Sam slept-sucked through his first bottle of day
A bit more awake and started to check out his new "suite".
With the help of a little morphine, Sam even managed some downtime in the hospital. This was on Thursday afternoon, about three hours after the operation.
Friday morning and all ready to leave!
Sam's first bath after the operation, plastic bags and all. Excuse the
lovely pink washcloth mind you, it was the first thing I could find
to cover those sensitive areas before Chris snapped the pic.
So our little man is well on the road to recovery. On Monday we go back to Dr Carter for him to remove the bandages and fit the splints. We also got some great news from Dr Perrot on Monday that the glaucoma examination he did while Sam was under, came back 100% negative for glaucoma or any other problems with his eyes! Yay!
"The Lord is near to all who call on Him, to all who call on Him in truth. He fulfills the desires of those who fear Him; He hears their cry and saves them."
Psalm 145 :18-19
"I am the Lord, your God, who takes hold of your right hand and says to you "Do not fear; I will help you.'"
Isaiah 41:13

4 comments:

  1. Amen to that and to our very Great God who never fails us when we truly trust and believe. Such wonderful news especially the glaucoma another challenge overcome. He is such a tough little fellow and very very blessed to have such parents. What a beautiful photo.....lots of love Anthea

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  2. i love the pics!!and sammy take advantage of them all you deserved to be spoilt rotten!love Janina

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  3. Oh Nicky, Sam's getting so big! Well done on being strong for the op. Lotsa love Vickie and Jodie

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  4. I'm so glad the surgery and recovery is going well! I hope this is encouragement to you the next time you're nervous about something...everything works out in the end. Hugs!

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