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)

Monday, February 27, 2012

Refreshing....

It was back to therapies for Sam last week, with the exception of physio which we'll start again next week just to make sure Sam has definitely had enough time to recover. Shortly before Sam's surgery, we were invited to undergo an assessment with a NDT OT just a stone's throw away from Meg's school. Sam had his very first session last Tuesday morning, which went quite well although the session was pretty low-key. We've suspended a new kind of swing from our lounge ceiling made from spandex, which Sam is finding way more comfortable and enjoyable than the plastic one we first tried obviously because the new one is far more suitable for satisfying his sensory issues. Day-to-day functioning (from a sensory point of view) over the past week has been none to challenging on the whole though, especially with regards to movements like putting Sam into his carseat and into the bath, etc. Some time after the first testicle operation, Dr B told me that he had an idea that much of Sam's sensory problems were related to the pain and discomfort of having the right testicle attached midway to a blood vessel and Sam's increased mobility and decreasing defensiveness is an obvious indication that Dr B was right. Don't get me wrong - we are still not functioning in a completely normal way yet (Sam's "normal" that is) and things like sitting unsupported on the floor or in his cot, etc are still not possible. But there is progress, albeit painstakingly slow. The new OT also feels that a large part of Sam's defensiveness is related to the trauma of so many surgeries, treatments, illnesses, etc and believes that Sam is very "bright" so is extremely aware of what is going on around him. You can imagine my despair then when last Tuesday evening, after just having discussed this very matter with the OT, an e-mail came through as I sat at the pc from Sam's orthopaed to advise that he would like to schedule Sam's foot surgery for 14th June 2012. One coronary, several hyperventilating gasps of air and a "Please not yet"' e-mail later, Dr dT agreed that we could wait until about September to go ahead with the surgery. And this very matter rides on the back of my last post about doctors who genuinely do care about their patients emotional wellbeing, as well as the physical. Dr dT had consulted with another surgeon who would be assisting in Sam's surgery and this was obviously a date that they had both felt would be convenient for them but still opted to instead give Sam the much needed time to recovery emotionally from the last few months.

With Sam not having ingested even half of the Augmentyn he'd been prescribed the previous week for his tonsillitis, I'd been watching him closely for any signs which might need me to consult the ENT again. By Thursday, while there was no obvious airway obstruction as there had been before, Sam was definitely having trouble swallowing again and even though he was still on some mild painmeds (mainly paracetamol and/or mefanamic acid) he's temp hovered consistently around 37.5ÂșC so by Friday we were off to the paed again who confirmed that Sam is still battling to overcome the same virus he's been grappling with since December and it was more than likely this, perhaps with some added irritation from the intubation, that had found him admitted on the Monday after surgery. Dr B now feels that Samuel's immune system is just not coping and is severely compromised and not in a condition to be able to fight it's way past whatever virus or bug it engages. So we have started Sam on our second last resort - which is a six month course of antibiotics, Zithromax. In the meantime, while we are trying to keep any further infections at bay, we are to find an opportunity to test Sam's iGE levels and, if they come back confirming Dr B's theory, submit an application to the medical aid to obtain authorisation for the last resort - Polygam Infusions. Polygam Infusions is basically intravenous Immunoglobulin (sourced from donated blood) administered, obviously, via an IV every three to four weeks, over a period of 6 - 8 hours. Needless to say, we are hoping with every inch of our beings that the six month course of Zithromax does the trick though (bearing in mind that we'll be heading into Winter within the next few months) because I just don't see this little smurf being all too excited about having to spend an entire day in hospital...with a drip...every three weeks!!!! (We're gonna need a roomful of OT's to recover from that!).

The Zithromax story proved quite a challenge on it's own for our pharmacy though. Zithromax is one of the few antibiotics which you do not keep in the fridge as it turns into something quite remarkably similar to cement! For now, Sam only gets two doses per week...but the Zithromax only has a shelf-life of five days. Thankfully, after loads of head-scratching and chin-rubbing, we emerged from the pharmacy an hour-and-a-half later with a three week supply of Zithromax powder neatly and accurately portioned off in little containers, which simply require me to mix with the required amount of distilled water (also provided) to produce the exact dose needed for each day it needs to be administered.

One thing really stood out for me last week : that, while there are certainly some medical caregivers who have perhaps lost their passion for their vocation, there are tenfold the number of doctors who have not and we are beyond thankful to have them helping us along our journey. I watched Dr B with Sam on Friday...first spending a good few minutes playing and talking to Sam to relax him, then explaining in careful detail...to SAM...before he carried out each part of the examination. When it came time to weigh Sam I thought it was tickets for sure...having Sam sit on a scale is almost a surefire way of coating your consulting room in some freshly produced vomit! But Dr B (without me coaching him) picked Sam up and held "his baby" the exact way I do when I put him in the bath or carseat and seconds later we had a clear 11.75kg reading!!! So, Friday's consultation together with Dr dT's quick response to my concerns and the pharmacist's patience and eagerness to do what they could to help ease our troubles just completely refreshes the spirit :)

2 comments:

  1. Nicky I am so glad you have received some refreshing experiences. You certainly deserve some refreshment after the hot, dry heat of sensory issues, and the baking sun of post op issues, and the desert experience of not-so-caring medical professionals. I am really really praying that every day Sam, your little bright boy, realises and learns that he is in less pain, and he can become less scared and find joy again in movements that were once excrutiating. And praying for wellness. Sending HUGS!

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  2. Yes, refreshing! So glad you've been refreshed, and praying for continued refreshment!

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