Sam did not have a great night on Sunday night...continued fever despite the suppository, another vomit-episode and by Monday morning he was so dehydrated that his tongue was virtually stuck to the side of his mouth. First thing on Monday morning we went off to our GP hoping it was not too serious but after examining Sam and being a little concerned about how quickly he'd become dehydrated, he phoned Dr S who instructed us to take Sam straight back to the ward. Dr S gave Sam a quick once-over and said he definitely needed a drip, if we could manage one as both wrists and his left ankle had already been punctured and bruised from the surgery. Dr S did manage an initial success with Sam's left wrist but within seconds the vein collapsed. After much screaming and gagging, he eventually got the drip into Sam's right leg and also drew some blood for testing as well.
Once Sam was settled back in the ward he had a bottle, a dose of Rocephin and a dose of Perfalgon and then took a four hour long nap. He was thoroughly exhausted. Dr S advised that his blood tests had come back clean of any "funnies" and that his feel was that with Sam's throat having already been a little irritated before the surgery, intubating him could possibly have brought on a full-on infection. On Tuesday afternoon we were discharged again, after another dose of Rocephin and a seemingly more comfortable smurf. We continued our post-op surgery regime at home and although Sam's wound seemed to be doing okay (despite needing a dressing change on Thursday after a particularly explosive poo nappy) by Thursday night Sam's nose was sounding really congested again and most of the night was disrupted by his choking/gagging/apnoeaíng episodes. Sam was originally supposed to see his ENT last Friday already but with him only having been discharged on the Tuesday with regular examinations by Dr S (who confirmed that his grommets were looking great) I had originally intended to give the kid a break from Vincent Pallotti and only make the follow-up for the end of this week but after Thursday night's troubles, managed an appointment for this morning. And thank goodness too! So far every nighttime has been plagued with breathing difficulties (including a mid-sleep vomit on Saturday night) and definite discomfort when swallowing.
Sam's ENT confirmed this morning that Sam has quite a nasty dose of tonsillitis, leaving him with rather enlarged tonsils, and also feels that it is more than likely as a result of being intubated while his immune system was already a little compromised. He's put Sam on a course of Augmentyn (which will be totally awesome on his already drug-riddled tummy) but warned that we could be looking at a tonsillectomy soon!! Really??? Arrrrggghhhh!!! I cannot for the life of me remember when last Sam was even remotely healthy....he started with the croup and viral infections round October/November at least (and that's not including all the ear troubles before that) and we are mid-February now. It is so unbelievably frustrating - I left the ENT's rooms with the usual "thank you's" and what-nots but honestly felt like going around the corner and bashing my head into the nearest wall.... :(
Sharing the journey of Sam the Conqueror, a medically-complex, differently-abled warrior whose precious spirit refuses to surrender to the limits imposed on him by his multiple diagnoses : Rubinstein-Taybi Syndrome, Cerebral Palsy (Periventricular Leukomalacia and Static Leukoencephalopathy) and Epilepsy.
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)
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)
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I'm sorry to hear that Sam is having more difficulty! I'm sure that they have done this....but, my Emma's first 2 years were horrible! She was always sick with respiratory stuff, and finally they did a swallow study and found she was silently aspirating. We started thickening everything that she drank and she was like a new child. Just a thought....anything to help Sam...and his mom:).
ReplyDelete:( I'm so sorry...it is such a drag when kids are sick and Sam has definitely been sick for a long time. I pray that he is healthy soon and that you can have a rest.
ReplyDeleteThanx Cindy! Hi Angie - all thoughts and suggestions are always SO welcome, thank you! Sam did have a swallow study done when he was about 4 months old. It showed that, although he has nasty reflux, he doesn't generally aspirate. We still did the thickening agent in his formula for the first two years or so (what a pain!) but then he developed an aversion to it after a particularly bad case of tonsillitis. Mmmm...but now as I type this, it does seem that a lot of Sam's respiratory issues have worsened after taking him off the thickening agent. Worth further investigation for sure! x
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