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 37.5ºC 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 :)
Monday, February 27, 2012
Saturday, February 18, 2012
What Special Needs Parents want from Doctors and Hospitals
"An appreciation of our child as something more than a cost-effectiveness problem.
Healthy or ill, rallying or near death, our child is a unique individual with strengths and gifts you may never know about -- not just a bag of organs using up a bed.
Cooperation, not combat.
Doctors and hospitals should be fighting with us against what's ailing our child, not against us to circumvent our parenting rights: Be our ally, not our enemy.
More options, not fewer.
If we seek alternative treatments, it's not because we're fools or dreamers, but because you've stopped offering creative and hope-inspiring options; show us you're not tied down by the-way-it's-always-done, and we'll listen.
Respect for the power of love.
Our love for our child endures past diagnosis, past illness, past hospitalization and treatment and futility and brain death -- our love for our child has no limits. Don't be surprised if we put more faith in that love than in you.
An understanding of the preciousness of one more hour, one more day.
Our memories may soon be all we have of our beloved child. We want as many as we can get. One more birthday, one more book read together, one more smile -- these are not small things.
A little respect.
We may not have gone to medical school, but we're the world's #1 expert on our child. Treat us like a peer, not like a roadblock in your way.
Get this: You could be wrong!
Doctors make mistakes. Frequently. Not little mistakes. Big ones. Chances are, we've had doctors underestimate, misinterpret, or mistreat our children before. We're still willing to listen and work with you. But take off that Superman cape before you talk to us."
The above is an excerpt I borrowed from Terri Mauro off one of her recent specialchildren.about.com posts following the outrage caused by the atrociously unjust manner in which Amelia "Mia" Rivera's life threatening need for a kidney transplant was dismissed due to her mental disability.
The subject of doctors and their compassion and care (or lack thereof) of patients, especially special needs children, is probably one of my most passionate and infuriating "sensitivities" and I have "sensitivities" by the truckload so that's really saying something.
Since Sam's arrival into our lives we've had to, as with all SN families, encounter too many doctors, specialists, nurses and the likes. The reason for having had so many is not purely because that's how many medical caregivers Sam has needed but also largely due to not always being able to find a caregiver who is not only experienced and clued-up in his/her particular field, but also compassionate, caring, supportive and assertive yet humble enough to lead you confidently towards a particular treatment/medication, etc without stripping you of your power to make that final decision at your discretion. As I've mentioned many times before, we have been blessed to find several specialists to take care of Sam who genuinely are all of these wonderful things, but there have just been too many who either intentionally dismiss several of Sam's issues relating to his wellbeing either because of unjustified ego's or complete indifference to all of their patients. Or those who unintentionally dismiss him possibly because they feel his mental disability does not allow him to experience pain/discomfort/fear the same way we do? While I struggle to hold the second group completely accountable for their actions, the first group I believe are bordering on unforgivable.
I have sometimes wondered if perhaps my less-than-assertive manner of speaking and only-slightly-taller-than-a-smurf height might have something to do with why some doctors don't seem to pay much attention to my suggestions/queries or take me seriously because, in all fairness, it is not only doctors who sometimes overlook (pardon the pun) what I have to say. But then I will occasionally notice other "normal" patients being treated the same and it is, in a warped kind of way, reassuring that it isn't just me and/or Sam. There can surely only be two reasons why any one person decides to choose a vocation in medical caregiving : a pure and unconditional love of caring for others and their wellbeing or a pure and unconditional love of money. And only one of those reasons belong to the doctors you want treating your child. The whole situation is frustrating beyond, largely because it will never change. I cannot even begin to imagine the emotional anguish Amelia Rivera's mother must have endured when being told that her precious daughter's life had been rendered "second rate" just because of the different and unique way in which her little brain functions.
I always have and always will continue to make a point of sincerely thanking those doctors/specialists treating Sam who are quite obviously not just driven by the money, and affording them the praise and recognition they righteously deserve.
Healthy or ill, rallying or near death, our child is a unique individual with strengths and gifts you may never know about -- not just a bag of organs using up a bed.
Cooperation, not combat.
Doctors and hospitals should be fighting with us against what's ailing our child, not against us to circumvent our parenting rights: Be our ally, not our enemy.
More options, not fewer.
If we seek alternative treatments, it's not because we're fools or dreamers, but because you've stopped offering creative and hope-inspiring options; show us you're not tied down by the-way-it's-always-done, and we'll listen.
Respect for the power of love.
Our love for our child endures past diagnosis, past illness, past hospitalization and treatment and futility and brain death -- our love for our child has no limits. Don't be surprised if we put more faith in that love than in you.
An understanding of the preciousness of one more hour, one more day.
Our memories may soon be all we have of our beloved child. We want as many as we can get. One more birthday, one more book read together, one more smile -- these are not small things.
A little respect.
We may not have gone to medical school, but we're the world's #1 expert on our child. Treat us like a peer, not like a roadblock in your way.
Get this: You could be wrong!
Doctors make mistakes. Frequently. Not little mistakes. Big ones. Chances are, we've had doctors underestimate, misinterpret, or mistreat our children before. We're still willing to listen and work with you. But take off that Superman cape before you talk to us."
The above is an excerpt I borrowed from Terri Mauro off one of her recent specialchildren.about.com posts following the outrage caused by the atrociously unjust manner in which Amelia "Mia" Rivera's life threatening need for a kidney transplant was dismissed due to her mental disability.
The subject of doctors and their compassion and care (or lack thereof) of patients, especially special needs children, is probably one of my most passionate and infuriating "sensitivities" and I have "sensitivities" by the truckload so that's really saying something.
Since Sam's arrival into our lives we've had to, as with all SN families, encounter too many doctors, specialists, nurses and the likes. The reason for having had so many is not purely because that's how many medical caregivers Sam has needed but also largely due to not always being able to find a caregiver who is not only experienced and clued-up in his/her particular field, but also compassionate, caring, supportive and assertive yet humble enough to lead you confidently towards a particular treatment/medication, etc without stripping you of your power to make that final decision at your discretion. As I've mentioned many times before, we have been blessed to find several specialists to take care of Sam who genuinely are all of these wonderful things, but there have just been too many who either intentionally dismiss several of Sam's issues relating to his wellbeing either because of unjustified ego's or complete indifference to all of their patients. Or those who unintentionally dismiss him possibly because they feel his mental disability does not allow him to experience pain/discomfort/fear the same way we do? While I struggle to hold the second group completely accountable for their actions, the first group I believe are bordering on unforgivable.
I have sometimes wondered if perhaps my less-than-assertive manner of speaking and only-slightly-taller-than-a-smurf height might have something to do with why some doctors don't seem to pay much attention to my suggestions/queries or take me seriously because, in all fairness, it is not only doctors who sometimes overlook (pardon the pun) what I have to say. But then I will occasionally notice other "normal" patients being treated the same and it is, in a warped kind of way, reassuring that it isn't just me and/or Sam. There can surely only be two reasons why any one person decides to choose a vocation in medical caregiving : a pure and unconditional love of caring for others and their wellbeing or a pure and unconditional love of money. And only one of those reasons belong to the doctors you want treating your child. The whole situation is frustrating beyond, largely because it will never change. I cannot even begin to imagine the emotional anguish Amelia Rivera's mother must have endured when being told that her precious daughter's life had been rendered "second rate" just because of the different and unique way in which her little brain functions.
I always have and always will continue to make a point of sincerely thanking those doctors/specialists treating Sam who are quite obviously not just driven by the money, and affording them the praise and recognition they righteously deserve.
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/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.... :(
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.... :(
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).
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...
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!
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!
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