Sam. Conqueror. Overcomer.

"IN ALL THINGS WE ARE MORE THAN CONQUERORS THROUGH HIM WHO LOVES US : Samuel was born on 15th May 2009, two months early and in respiratory distress. After an initial Apgar score of 1, he was taken to the NICU and placed on a ventilator, together with an undeterminable amount of tubes, IV’s and monitors which made it almost impossible to see the little Smurfie character lying within…slightly blue and only three apples high. Sam was diagnosed within 24 hours with Rubinstein-Taybi Syndrome, a scarce medical advantage as, due to the rare occurrence of the Syndrome and the limited medical literature on it, many individuals are only diagnosed well into adulthood and some never at all. The page-long list of medical/health issues related to the syndrome, while vital in providing a prognosis and compiling a care plan, took a backseat, however, as Sam’s struggle to breathe and swallow became the primary focus of our concerns and prayers, deepened only by the heartache of not being allowed to hold and comfort him for the first ten days of his already traumatic life. After seven weeks Sam was successfully weaned from the oxygen but was still dependent on a nasal gastric tube for feeding, with which he was eventually discharged. Once home, what should have been a precious time to recover from the stress of the NICU and enjoy a relaxed and cherished time together, instead became a seemingly-endless timeline of specialist appointments, therapies, illnesses and surgeries as that page-long list of medical complexities came into play, affecting every part of Sam…physically, neurologically, medically and emotionally. Yet, despite these challenges and an “ineducable” future being predicted when his prognosis was delivered, Sam showed a delightful potential and eagerness for learning. Unfortunately though, this learning potential seemed limited to his cognitive abilities as, physically, Sam’s development lagged significantly behind that of his RTS peers. A week before his 5th birthday a brain MRI confirmed that, in addition to the RTS, Sam also has Periventricular Leukomalacia and Static Leukoencephalopathy (included under the umbrella diagnosis of Cerebral Palsy), which would more than likely have occurred as a result of the oxygen deprivation experienced leading up to and/or during his birth. Thirteen years later and with a number of surgeries and medical procedures which appear to be in fierce competition for their own “page-long list” (which surgeries and their subsequent recoveries have left Sam to face his day-to-day life with a residue of unshakeable anxieties and phobias), the boy you meet face-to-face…with his cheeky sense of humour, unfathomable joy and fierce warrior spirit…make it almost impossible to believe that that disheartening brain MRI and poor medical prognosis are of the same kid. As we begin to navigate this journey with a newly aged differently-abled teenager, leaving behind the little smurf whose fears and discomforts could so easily be remedied with a cuddle on mom’s lap, the anxiety of more surgeries and medical challenges now compounded by the universal fear of every differently-abled child’s parent/s (who will take care of their child once their own time here is gone) threatens to become overwhelming. But then the excitement of a horseriding lesson, the sheer delight of spotting a balloon (especially a hot air balloon) or a super silly giggle caused by simply hearing someone sneeze provides a beautiful reminder of the profound joy and courage these children radiate, despite their overwhelming challenges, and it provides the perfect encouragement and inspiration for facing your own. #samtheconqueror
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)

Saturday, February 4, 2012

Post Op : Day 1

After Sam's throwing up episode on Thursday evening I was convinced I'd made the wrong decision about having him undergo surgery on Friday morning. I pictured myself having to phone the hospital at 6am to ask that they inform the three doctors involved in his procedures that we would have to cancel. With Sam being scheduled to go into theatre at 8am and this then being the third time we'd be postponing, I imagined they'd be understandably irritated. But with there being little else for me to do until then, I gave Sam another Zafron Wafer and got him back to sleep. With all Sam's other surgeries, I usually wake him up at about 1am the morning of the surgery to give him a bottle as, as you all probably know, he can have no milk or solids for six hours before he goes under. By 1am on Friday morning there'd been no further incidents of vomiting or cramping and, in fact, Sam seemed quite peaceful. Leaning on the faith that God had heard all the prayers been said for Sam and for him to be well enough for Friday, I got up to make his bottle....pretty much pointlessly though as I could not wake him up enough to actually drink it. At 5am and after several more hours of peaceful sleep (on Sam and Chris's side that is) I prepared our things to leave and made one last (and again pointless) attempt to give Sam first some milkless tea and then apple juice. And then we were on our way to the hospital, still feeling a little amazed that we hadn't had to postpone.

There was a fleeting panicky moment or two in the ward when I was first told that Sam was in fact scheduled to have the teste brought down and not removed, as I'd arranged with Dr J. and then when I overheard another nurse telling her colleague that Sam was having a bladder-lift. Thankfully we had one quick chance to just confirm with the urologist that the testicle was being completely removed. Sam was a perfect angel while waiting in the ward to go up to theatre, full of smiles for everyone and not nearly as agitated as he usually is at even just the sight of a hospital cot or nurse. The only two minor challenges we had was that, firstly, he absolutely refused to swallow his pre-meds and kept it in his mouth all the way up from the ward to the theatre where he eventually swallowed (he once kept food in this mouth for almost 20 minutes before swallowing, although by then it wasn't food anymore...just coloured saliva). And then when they put the mask over his face he got agitated for a couple of seconds, also quite understandably.

Dr J advised that the three procedures would take about an hour-and-a-half, but one hour and five minutes later the anaesthetist came out to advise that they were finished and Sam was already in recovery. There was some bleeding from the wound which the nurses were instructed to keep an eye on and Sam had apparently required a little oxygen in recovery, but other than that there were no considerable hiccups. Sam reacted when stimulated, but otherwise slept for two solid hours afterwards. He woke up just a little disorientated and miserable, but within minutes was happily iPadding and quickly and thirstily drank his bottle, followed by some Kit-Kat. After he'd had his bottle and made a wee, his drip was removed and Dr J came in to check on Sam and confirm that he could go home. He also told us that opting to remove the testicle was the best decision we could have made as the testicle was so high up, he doubted whether he would have been able to successfully place it into Sam's scrotum.

Sam had had a local anaesthetic injected into the actual wound while still in surgery, as well as some oral painkillers in the ward so by the time we were on our way home, he was good and solid painfree. Once at home we tried to keep him as still as possible, knowing that eventually that local anaesthetic would wear off...which it did, at 3:45am this morning.

As with most of our RTS sweeties, Sam has a pretty high pain threshold but last night could well have been the first time I have known him to cry so heartbreakingly with pain. Even just slight movements set him off. So we quickly gave him a suppository and eventually, about an hour later (round 5am) he drifted off to sleep again....and was awake, bright-eyed and bushy-tailed at 6! He is a whole lot more wary today of how he moves around and is, very surprisingly, quite content to lie on our laps, be pushed around in his pram or to lie on the bed...



Taking a nap in his pram. Sam has a thing lately about sleeping with his face covered, in this case by both his chew blankey and a book (despite the 30-something degree temperature outside)


Chocolate pudding...always a reason to smile


then nicely transferred onto his chew-blankey (for future flavour, I presume?) before I could get to wipe his face (a business opportunity perhaps?)


Lying on the bed with Dad (where he has now fallen asleep...or should I say....where THEY have fallen asleep). While Sam happily kicks away with his left leg, he's quite careful to keep the right one still.

Even though the procedure carried out in August, from a surgical point of view, was far more traumatic and agressive than yesterday, Sam's pain seems to be a little more intense. However, everything else about yesterday's surgery just went so much more smoother and comfortably than in August, even with Sam's tummy bug and the last minute threat and resulting uncertainty of possibly needing to cancel. I am so relieved and super-thrilled that I decided to rather go ahead and get the surgery over with. And I think I know why I was able to do this.

On Thursday I was really stressed about which was the best option for Sam. Postpone or go ahead? I looked to everyone else to help me decide what to do and when Dr S himself seemed a little unsure on Thursday morning about what was the best way forward, I lost even more confidence in my being able to make the best decision for Sam. After posting on FB on Thursday that Sam had a tummy bug and there was a really good chance we were going to have to postpone again, I received the usual amount of encouraging messages and sentiments from my family...with there being one across-the-board sentiment - to have faith. Moments before sending Dr S the message, detailing how Sam had been through the course of the afternoon (as mentioned in my previous post) I took a moment to discuss the matter with the most important Being I had neglected to seek guidance from and asked that He help me in the right direction. The text I received back from Dr S, even after my rather lengthy, detailed, mom-losing-it-to-paranoia message,was a simple two-word instruction..."Do It".

And so we did.


1 comment:

  1. I'm glad everything went so well!! I think any surgical procedure in a male's nether-regions is probably destined to be more painful than anything else, regardless of pain threshold. That was Stephen's worst surgery too - he was only 9 months, and it was an epic battle just to get him to take a bottle for the first 3-4 days. Sam seems to be in pretty good spirits, so fingers crossed for a speedy recovery!

    ReplyDelete