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)
Showing posts with label Conquering Surgery. Show all posts
Showing posts with label Conquering Surgery. Show all posts

Saturday, July 19, 2014

And here's why...

...(for those who might ever have wondered) it is not a fab idea to have your overwhelmingly anxious child's dentist located in a shopping mall you frequent. Beeeeeecause...surprisingly...when three consecutive trips to said mall are purely for dental consults (the last of which ended in Meg and I discreetly trying to dispose of a margarine tub full of puke) certain smurfy lil dudes presume that every visit thereafter will involve more of the same. So it was with a touch of our own anxiety that we went off to run a few errands recently. When merely walking towards the entrance (on the completely opposite side of the mall) Sam transformed into a teeth-chattering, uncontrollably-shaking little bundle of nerves so Meg and I agreed to make it a super fast dash through the necessities, avoiding that side of the mall at all costs. How entertaining to, literally moments later, bump into.....guess who....Sam's dentist. Eeeeeeekk! After a quick exchange of niceties and firm reassurances that Sam was not, in fact, succumbing to hyperthermia we rushed through the centre like a couple of crazy loons and came out on the other end triumphant! I mean really, every puke-deprived outing is something to celebrate, right?
 
After spinal cord surgery, 2 x testicle surgeries, thumb surgery and a few ENT procedures here and there who would have imagined a dental procedure could be anywhere near as traumatic. After having our original theatre date bumped further along thanks to a doctor and his ego (not even gonna go there) which resulted in an unnecessary additional consultation (which would be the one that involved that dodgy marg tub disposal) we eventually made our way to the day hospital last week Tuesday. On the agenda was the removal of one tooth on the side which the dentist suspected might have had an abscess on it for some time, filling what ever else required it, applying sealant and then the removal of that little front, chipped tooth which was the one we were most concerned about as, having ground the tooth literally down into the gum, Sam had left nothing left to be gripped which meant the tooth literally had to be cut out of the gum. Sam was relatively calm until the moment we entered the theatre. Whether it was the absence of a pre-med, the presence of the dentist or the fact that the gas was administered at a much slower rate than usual...or a combination of all three...Sam freaked out. And by freaked out I mean he kicked, body slammed, smacked and pulled anything and everything he could make contact with. It was by far the most traumatic anaesthetic out of eight, we've ever experienced and left me feeling extremely unsettled and disorientated as I made my way back to the ward. Once the almost two-hour long procedure was over the dentist came in to advise that all had gone well. There certainly had been a nasty abscess on that one tooth which had drained once she pulled the tooth. She advised that both sets of stitches would dissolve in about 8 - 10 days and shortly after that we were on our way home. Over the next couple of days I kept a careful watch on Sam's wounds, focusing mainly on the front one where the tooth had required cutting out as it looked a little more "brutal" than I'd anticipated. On Tuesday morning I noticed that the gum where the abscess had been was very red and inflamed. I took a pic and e-mailed it to the dentist :
 
 
She felt that Sam might be having an allergic reaction to the suture and suggested I try removing the stitch. Um...sure...why not? After trying for almost an hour on Tuesday evening, I could not get Sam to stop flapping and head-rolling long enough to get hold of the stitch although he'd quite alarmingly allowed me to fiddle around in this mouth without much protesting. On Wed I took Sam off to the GP to see if she couldn't perhaps remove the stitch but once again Sam's flapping got in the way and so we made our way home with both the stitch and a prescription for an antibiotic to at least try and clear up the infection. On Wednesday evening, desperate to just put all this toothy business behind us, I lay on the bed with Sam and every couple of minutes would snip lightly at the knot and low-and-behold the darn thing came loose after a couple of tugs. Wooo Hooo! Hopefully the antibiotic successfully does it's thing and we don't have to even think about a dentist (nothing personal of course) for another six months.
 
Other than all things tooth-related, life has been low-key with the exception of a particularly exciting walk around our local pond all thanks to a psycho, stalker bee who mistook me in my violet fleece top to be a giant helping of something pollen filled and despite hysterical screeches and bee-deterring dances (much to the delight of fellow pond-visitors) lay in waiting as we completed our stroll to launch yet another farewell attack. Thankfully the random stroller parts which were hurled at it and frantic swiping and side-stepping eventually allowed us to escape. From now on, only black or grey garb shall be worn on sunny winter days when trying to remedy a bit of cabin fever with a leisurely walk. Pfffft.


One of Sam's current fads...umbrellas! We are so passed the whole "opening an umbrella indoors is bad luck" scenario :D
 

And for sure the only kid who is more fascinated by the scrolling numbers on the dvd player than the actual dvd playing.
 
It was several kinds of wonderful to get out of the house on Friday and spend some time with fellow journeying moms, made that much more appreciated by being treated to lunch by the Daniel and Friends Fund ladies, as well as each being sent home with a pack of nappies and tin of Pediasure. It being a different mall to that mall Sam was pretty chilled, despite it being over a busy lunchtime, and absolutely adored all the attention he got and precious new friends he and mom made...a truly blessed afternoon it was...

 
 
Many thanks to Marilyn, Kate and Lianie xxx

 

Friday, February 17, 2012

Learning who's boss, a ferocious beast and Frugal Dad

Sometime over last weekend (could perhaps have been Sunday) I was standing outside getting a breathe of air and debating with myself, in desbelief of course, whether it could actually be possible that a new ailment had been added to Sam's surgery recovery and consequential throat infection. Mid-debate I noticed this rainbow and while running inside to grab my camera found my spirits lifting a bit as I was certain it was a sure sign that there was nothing to be anxious about.......

...alas Monday morning's ENT appointment slammed that momentary lapse of reason to the wall! But, oh, the joy (albeit it temporary) of whimsical daydreams....

Despite his tonsillitis and, mostly nighttime, struggles with swallowing and breathing Sam didn't seem in such bad spirits for the most part and has been happy to crawl around and play and not-sleep (you know, the usual stuff). There is an app on his iPad (can't quite remember the name - could be "Zoo-something-or-other) which shows a pic of an animal, says the animal's name and then makes the relevant animal sound. Sam has taken to matching his little plastic animals to whatever animal pic is on the screen. The penquin picture usually has us laughing as the penquin's eyes are yellow and a little scary if you ask me and the penquin sound is quite screechy and startling...and Sam knows this by now, but still insists on flicking repeatedly to the penquin pic, pressing the sound button and then moaning as if he's been unwillingly subjected to it. Comical little smurf...





Comedy aside - the challenge of trying to get Sam's antibiotic in him has become hectically distressing and on more than one occasion driven me close to tears, purely because I know how vital it is for him to complete the course in order to avoid his tonsils having to come out. He had one full dose on Monday and another full dose yesterday morning, if I remember correctly...but that means that out of the required 45mls he needed in total, he's had just over 9mls which I doubt would be anywhere near enough to combat the tonsillitis. In actual fact, I don't just doubt it - I'm pretty darn sure it hasn't been enough purely because I can see what minimum affect the Augmentyn has had on his system, compared to the usual havoc it wreaks. The last time Sam had the Augmentyn we actually stopped it 3½ days into the course because, despite me stopping his Movicol completely and keeping him on Reuteri, the diarrohea just got completely out of control. This time round I haven't even had to reduce his Movicol at all, nevermind stop it completely. So the better part of the Augmentyn has been either vomited out when Sam's starts crying because of having to have it or plain and simply spat out, sometimes after having been kept in Sam's mouth for over half-an-hour. The picture below was taken on Tuesday night when (and this is no exaggeration) Samuel kept the Augmentyn in his mouth for over 45minutes. I decided to try and give it to him while he was in the bath, for two good reasons 1) being to hopefully try and salvage some of the furniture and carpets which is coated with the lovely chalky mixture that is Augmentyn and 2) being that I thought his bathing and playing and then getting dressed, etc might distract him from his stubborn refusal not to swallow (and that has to be all it is, because the stuff doesn't even taste THAT bad...he's definitely had worse). How naive of me to think I can outsmart Mulish Smurf. Sam proceeded to be bathed, dried, dressed and then happily played on the floor...all the while keeping the, now mostly-saliva,mixture in his mouth.


The problem of course was that by Wednesday I couldn't even try and re-administer any of the doses expelled because there just wasn't enough of the antibiotic left. So if it came out...it stayed out! This morning, low-and-behold, smurf swallowed every last drop of what was left of the Augmentyn (which was only just over 3mls) without moaning, resisting or gagging/vomiting once! Just too little, too late. With the un-resisted dose this morning it's as if Sam was just making it exceptionally clear (as if there could possibly have been any disillusion) exactly who is boss....




 
Random Stuff

I was watching a program yesterday morning about Chow Chow's and the expert leading the discussion advised that Chow Chows are one of the most powerful and formidable breeds of canine and even have the extra teeth to prove it. I am waiting for a re-run of the show so that I can record it and show it to our Max - the same Max who literally wet himself when a 3 month old pupply ran up to him to play one day. The same Max who tries to slink away as much as possible into the ground when we go for a walk in the hope that the neighbourhood dogs might not notice him and, horror of horrors, bark at him.

Our ferocious beast....



Frugal Dad

I was asked some time ago to share a link to Frugal Dad regarding some thought provoking statistics regarding the high percentage of toy sales in the USA. While the larger part of our blog's followers are South African, the information is quite interesting nevertheless and I know I too (when financial circumstances allowed) have fallen prey to the purchasing of unnecessary toys on occasion.

Monday, February 13, 2012

A possible tonsillectomy and potential head-bashing

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/apnoeaĆ­ng 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.... :(

Sunday, February 5, 2012

Post Op : Day 2

Today started off hot and sticky (and not only because of the daily temps hanging around the high 30's) at about 2am with me trying to give a super sleepy smurf some painmeds. On Friday evening, because he'd had the local anaesthetic into the wound and an additional suppository in the late afternoon, I opted to let Sam sleep through instead of trying to wake him to give him something for pain. So when he woke up yesterday morning, it was without the benefit of any painmeds and he cried bitterly for close to an hour (as mentioned in yesterday's post) as it took me a while to calm him down enough to get him to swallow something. While suppositories are obviously much more effective, we are usually quite lucky to manage two or three before he starts flatly refusing them by screaming and fighting when we try and we definitely don't want him squirming and struggling at the moment, so we try and reserve the suppositories for the more needy times like at night.

I decided that I would give Sam something during the night so that he didn't wake up to such intense pain again and when he started whining, around 2am, every time he shifted position I knew his meds were already starting to wear off. It would have been wonderful for me to be able to wake little smurf up to explain to him why I was going to be squirting some vile tasting stuff into his mouth at such an horrendous hour, but obviously this is not the case (although I do still find myself explaining and reasoning with him...you know, just in case). Now, take into consideration the already challenging swallow issues due to how attached Sam becomes to the medication, food or whatever that gets put into his mouth and finds it, like quite a few of his RTS brothers and sisters, quite difficult to have to part with said medication, food or whatever....and add to it the even more entertaining challenge of doing it while Sam is not quite awake! Again it took close to an hour to administer the meds but this time not because he was crying, because he kept going off to sleep with a mouthful of particularly sticky liquid which would inevitably land up dribbling out of his mouth.  It is really quite amazing how he does not have the natural reflex to swallow...even if I put something right at the back of his tongue...almost in his throat, he still quite often sort of forgets to swallow. There have been moments when I've been feeding him and I'll give him a spoon of food and, in the hope that another offered spoonful will initiate some swallowing, put another to his mouth but instead he will simply open his mouth to accept the next mouthful...and then inevitably gag. Even as I sit typing this I find myself swallowing continuously just thinking about how irritating it could be.

Tonight we have administered the suppository as late as possible. Hopefully it will see Sam through till about 6am when I can rather wake him with a bottle and then give some more pain meds. For the most part Sam is still being quite cautious about what he does, although I can see he is becoming more and more frustrated at just lying down or sitting still. He did try crawling a little on the bed this afternoon during the hour it took for us to try and get him to take a nap (which nap then lasted a glorious two hours) but although he was quite happy to be on all fours, he moved very slowly and carefully and after flinching a couple of times when he must have hurt himself a little, he quite willingly opted to rather lie down again.

We've had one or two vomit episodes today and I am not entirely sure what it might have been caused by. Sam's temp was up again a bit so perhaps the viral tummy bug he had right up until Thursday evening is still hovering around. Perhaps it's just the painmeds playing havoc on his stomach. Or it could well be due to the fact that he hasn't had a bowel movement since Thursday and that, as many of you already know, can be a major aggravation where reflux and digestive issues are concerned. I have upped Sam's Movicol dosage for a while but am not too sure how helpful this will be as there could well be another cause for the absent bowel movement....it's just a little more funny - and that is that Sam sort of has a usual BM-passing "stance" and it's almost always when he's on all fours...and with him currently not being able to "assume the position" he might just be resisting the urge. Yes, that certainly does smack of smurf - he does so like sticking to his "normals". So tomorrow we are definitely going to be doing some crawling around I think, as long as I time it nicely after a dose of painmeds, and with any luck we'll have sorted that one out.

Just for a bit of change I put Sam in his swing with a cushion positioned strategically underneath to prevent him from his usual, fairly wild, swinging. He seemed quite comfortable and painfree so eventually he was even allowed some actual swinging (if I remember correctly, he was actually holding in a mouthful of veggies at the time).
 


With Sam's hygiene routine relying solely on bed baths at the moment, his hair is starting to look a little funky. I do what I can with a sponge on that mop, but it's obviously not as effective as the real thing. Having had to resort to the same thing last time, I had every intention of simply shaving Sam's head the evening before the operation but then, with his being ill at the time, decided not to.


Sam's favourite activity at the moment...his iPad. In fact, most days we have to hide the iPad every now and again so that we can move through the house without his inevitable protesting when he spots it and we aren't able to play. The fact that he has taken to kissing the screen of the iPad (with or without a mouthful of something) and has also become quite skilled at choosing what activity he wants to do (which sometimes includes drafting gibberish emails, deleting and/or taking photo's, etc) we try and make sure that he is never alone with the iPad anymore. And, certainly not the least important factor, for some extremely odd reason when Samuel is finished playing with something (whether it be a book, toy or yes, even the iPad) he has to throw it down instead of simply setting it aside.

But hey, if it wasn't a little "odd"...it just wouldn't be smurf.

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.


Thursday, February 2, 2012

A quick update on our bathing saga : after my last post I decided to just persevere with getting Sam into the bath so for two nights, although it took a fair amount of time, I patiently tried...and re-tried...and tried some more until I eventually managed to get Sam sitting. There were moments of hairpulling, neck-clutching, skin pinching panic...from both sides! Just kidding! Of course just from Sam's side! And one near-accident when the mat I was twisting and contortioning on suddenly slipped, but after a moment or two's uncertainty, Sam would start his usual sing-songing bath routine as if he'd been placed calmly and happily there. Tonight, low and behold, he went in with about half a second's hesitation! Woo Hoo...bathing fears conquered...just hours before we're about to subject him to another traumatising surgery, which will leave him bathless for a couple of weeks and we'll be right back at square one. *Sigh*

We almost didn't get the go-ahead for Sam's surgery tomorrow. I mentioned in my last post that Meg was down with a pretty potent stomach bug and that I was a little worried that Sam might catch it. I was quite firm about Meg staying pretty isolated in her room, at least until yesterday when she was feeling well enough to go to school. Last night, at about 9:20pm Sam started throwing up and carried on until the early hours of this morning. By about 5:00am I had almost decided that actually going in to Dr S to have him check Sam out for sugery was nothing more than a waste of time. But by 8:30am this morning Sam had managed to keep in the better part of his bottle as well as a little bit of porridge so off we went to see Dr S. Dr S was initially also fairly unsure about whether Sam would be okay for surgery, but by the end of our consult he felt that we should give Sam a few more hours before cancelling, with the help of some Zafron Wafers and Stopayne for the cramping. Sam had one or two gag episodes in the afternoon, possibly due to his swollen glands and slightly red throat but there was no vomiting and although he was battling a little with his bottles, he was mostly finishing them. So just after 3pm it was decided that we would not cancel tomorrow's op.

At the risk of sounding a little prone to MBPS (Munchausen by Proxy Syndrome) I have been quite desperate for Sam to undergo the orchidectory, not because the fact that he's having his fourth surgery in just a mere 19months doesn't bother me (because it does - a whole lot) but, as I've often shared, I have a feeling that some of his SPD could be related to the sensitivity or just plain discomfort of where that right testicle is sitting. Having said that, though, I would detest to make the process even more traumatic for Fearful Smurf by having him try to recover from both the surgery and the nauseau and tummy cramps associated with the tummy virus at the same time.

Thankfully Sam does seem a little more comfortable than he was this time last night (and just as I typed this line he started crying, probably due to his having just vomited in his cot - oh dear, Murph, gimme a break why don't you). So a quick ending to go clean up some puke! Yay!

Thursday, January 19, 2012

Yet another postponement....

I often wonder if parents of kids with special needs or those that are just poorly and need regular surgeries, ever sort of "get used" to sending their little ones off into theatre, feeling less and less anxious with each surgery and the recovery it brings with it. I know for sure that I am nowhere near reaching that point and feel as stressed and worried as if each surgery were Sam's first. It, of course, doesn't help much when you think there's going to be a surgery, then you think there won't, then it's back on and then, finally, it's definitely postponed...which is where we're at with the orchidectomy originally scheduled for 14 December then postponed till tomorrow and, as of today, now postponed till 3 February.


So, taking a temp hovering around around 37.6 - 38 ĀŗC into consideration as well as the no eating or sleeping, apnoeaing more than usual and red ears, Doc S did not feel that putting Sam through the surgery and the risk of opening him up for further infection, was wise....and as disappointing as it is not to be getting rid of that little testicle just yet, I was quite relieved to hear Doc S's verdict. So, here's starting a whole new countdown till 3 Feb.


There was something quite amusing that happened while Doc S was drawing some blood a few days ago, which I forgot to blog about. First, some background :


When Matt Tooke and his family visited us a few weeks ago, either his mom or his dad mentioned that Matt had such a sensory aversion to a particular texture that it would physically make him gag. At the time I thought to myself that it was surprising that Sam, with all his sensory issues, had not yet reached this level of defensiveness. Barely a day later (it could actually have been the same day) Meg was playing with a toy pom-pom and when it touched Sam's arm, he gagged! A few days later, Meg was playing with a balloon and sent it Sam's way and when it touched his hand...he gagged. The little mischievous smurf, I thought, never misses an opportunity for attention so had to "steal" an idea from our conversation that day. Anyway, we became more and more aware of new textures which would cause an aversion-induced gagging, like when Sam's favourite foam number 5 got torn in two and I cellotaped it together, he gagged when he accidentally picked it up at the point where I'd put it back together.


Anyway, texture aversion was nowhere near my list of concerns when Doc S drew Sam's blood the other day. Of course our first and main worry was that when Doc S put the needle in, Sam would scream so much that he'd vomit...especially as finding Sam's veins always proves to be a lengthy and fairly traumatic event for Sam. But, quite remarkably really, Doc S found that little vein super quick and had drawn the necessary amount within barely more than a minute and although Sam did cry, it was nothing near as epic as what we'd anticipated. But then Doc S, unknowingly, did the unthinkable...he put a little plaster over the tiny puncture! And we were off....to vomit-city. Of course we didn't figure it out straight away,  trying to catch bucketloads of puke does sort of distract you for a second. It was only when Sam managed to dislodge the plaster and then proceeded to gag some more that Chris figured it out, but by that time Sam had already emptied the entire contents of his stomach (which seemed surprisingly full) all over the pathologists' office'. Never a dull moment with our Sam...or even remotely ordinary for that matter.