Mikey not only has Autism and Epilepsy, he is also recovering from a Kythosis operation. His back was curving and it needed to be rectified. Here is a Blog of our journey and other life experiences:
The Beginning: Mark 9:14-29
Anyone who knows Mikey will tell you that he is special.
I’ve never met anyone like him and I’m pretty sure nobody else has or will.
Mikey has additional needs, don’t ask me what he has as nobody seems to know.
He has had many, many blood tests, genetic tests, you name it, he’s been tested for it.
So in many ways, he is special, unique even.
He also has Idiopathic Thoracic Hyper Kyphosis, which in a nut shell, curvature of the spine, which was first spotted by his masseuse.
I can still hear the consultant’s response echoing in my head, “He has a masseuse!?”
She isn’t really his masseuse but a sports injury specialist who he goes to see a couple of times a month to ease his tight muscles.
Mikey likes to call her Back Lady, as she also helps Nanny’s back pain, he is often heard starting a conversation with ” You go on holiday this year Back Lady?”
During one such visit Back Lady mentioned to Mum that she has some concerns about his back and to get it check out as it he may have Scoliosis.
We did have it checked out on her request and discovered that he in fact had Kyphosis not the reasonable easy to cure Scoliosis, he had to go the whole hog.
Now, anyone with a disabled or additional needs child will hopefully back me up on this.
When babies with additional needs are handed out by whoever lives in the sky, the parents are carefully selected as the best ones to be able to care for them the most.
I get that, fine, but why then do the children then have extra additional problems?
I haven’t yet met a parent with special child who hasn’t got something else to worry about, I could be wrong, just saying!
If it wasn’t for Back Lady I wouldn’t be writing this blog, big thank you Back Lady.
Mikey already has hypotonia, where his muscles are week on one side of his body.
His body tends to list to one side so it didn’t help that the kyphosis started to affect his feet.
He started to walk differently to compensate for the pain in his back.
We took him to some specialists and he was given a brace to help but he wouldn’t wear it.
He found it difficult to wear shoes so eventually he had a special pair made but these didn’t help either.
He even came out of school not wearing any shoes!
So the operation couldn’t come soon enough.
The Second Bit
Having discussed Mikey’s now noticeable curved spine with the GP, an appointment was made with a consultant.
Mum was told that he does have Kyphosis, he would therefore be put on the waiting list for surgery but Mikey was looking at probably a twelve hour operation!
This now as parents started to get a little bit more real.
As I always say, it is hard enough being a parent in the first place, let alone having a special child and now having to know your child has to have complex spinal surgery!
As the months past awaiting for another appointment more locally, the curvature and Mikey pain had become more noticeable. We had started to gently rub his back and look at each other with sadness in our eyes, knowing that this was the start of a long painful journey.
We also knew that, as Mikey has many Autistic traits, this was going to be the start of him asking when his operation was going to be and he did, in spades!
We got an appointment to see a consultant at the Children’s Hospital in January 2015 and we were optimistic as in the big scheme of things, we had only waited about 3-4 months.
I took him into the X-ray area and watched behind the lead screen.
He awkwardly tried to position himself where he was asked to stand and tried to stand straight. This is very difficult for Mikey as he has hypotonia, where he is very weak on one side of his body. He is naturally just awkward as he finds instructions and moving his body very difficult to process.
Mum asked me afterwards what the X-ray looked like, my only response was “You don’t have to be an expert to see he has a problem.”
The consultant was great.
He spoke all about the spine and how Mikey’s was curving in all directions but made us feel optimist and at ease.
We were told he was on the waiting list and it was now just a waiting game.
We had another appointment in March but after being told all the same things we kind of knew that we really did have to wait!
I rang the hospital in August almost apologetically, saying that I didn’t want to be a nuisance but was there any news.
An appointment was arranged for September and we thought this was going to be it, he would be getting an operation date. Wrong!!
My Waiting List is Obscene
We didn’t get to see consultant who was going to perform the operation at first but a junior consultant, he was great, until he uttered the words ” Do you have a date for the operation?”
Mum and I looked at each other and almost simultaneously said with frowns on our faces ” We thought we were here to be told Mikey had a date.”
I had that kind of ” so what is it we are here for then” grumpiness about me after that.
We have had our fair share of appointments with doctors, therapists, specialists, experts and consultants to know that this was going to be another meeting where nothing gets done.
The consultant spoke about the spine, showed us the X-rays and spent far too long trying to measure the curvature of the spine saying that he wasn’t used to the software. Great but not interested.
Then the big man himself appeared, the surgeon.
“Yes” we thought, he is here to sweep Mikey up, whisk him away, whilst shouting ” I am here to perform the operation now” as his cape disappeared into the distance. Our prayers will be answered.
Instead, he spent his precious time trying to belittle the poor junior consultant by getting him to answer questions about back stuff that left us bewildered.
When we finally got to talk, we were told that Mikey’s spine was at a 110 degree curve which was bad but had not got any worse.
If you and I bent over, our backs would be at a 90 degree curve. So as Mikey’s was 110, his lower back had to bend the other way to compensate for it and for him to relax his spine, he has to lean backwards rather than forward.
We let him know that Mikey was in a lot of pain, he was missing school, scouts and his feet were a state as the Kyphosis was affecting his walking.
We were then told that he no idea when the operation was, it could be another year, who knows, as his waiting list was ‘obscene’.
Mum an I were left alone for a few minutes, so we thought about what we could do to help Mikey. We discussed the possibility of going private. We set ourselves a realistic amount of money we could afford to pay.
We mentioned this to the junior consultant when he arrived back and were told that if that was the route we wanted to go down, Mikey could have the operation the next week!
The same surgeon would perform it in his private practice but it would cost tens of thousands of pounds, way outside our limit.
We were told the best thing to do was to ring up everyday and make a nuisance of ourselves as this seemed to be the only way to get things moving.
Who hasn’t been told that the only way to get things sorted for our special children, is to be the person on the phone they all go ” Oh god, it’s them again?”
Having being told the NHS system is currently a shambles since the closure of a hospital in the area, we left sad, deflated, annoyed but defiant. I was determined I wasn’t going to sit around just wait and be told when the operation was, I wanted be become that annoying parent on the other end of the telephone line.
I rang most days with mostly nothing new to ask, only explaining that as a parent it is so hard to see my child in so much pain everyday.
I got told the same old things that come straight from their script, “I’m sorry to hear that but my hands are tied”.
I had an idea to ring the local Councillor, he couldn’t help but he put me onto my local MP.
I wrote him an email explaining Mikey’s plight and received an email and a call two days later.
I was told that this was something that they would look into and were happy to do all they could to help.
In the meantime I got an appointment with the pediatrician who was lovely but I didn’t expect anything to come of it as this was just another meeting, one of many.
I explained that Mikey was taking very strong pain killer which often made him constipated and he had missed school and his beloved scouts. He was no longer able to wear his school shoes as his feet were so sore and we were still waiting for an orthotics appointment. I let her have the lot, I wasn’t holding back as nothing ever gets sorted at these meetings.
At the end of the meeting she was very sympathetic and wished there was something she could do to help.
Things started to move a lot quicker after that.
The orthotics appointment came through and some specialized shoes were made.
The MP kept in touch.
The pediatrician rang to say that she has asked for Mikey to be put on the urgent waiting list and to call the hospital just after Christmas.
After Christmas I rang the hospital and he has been given a date in March.
So we are almost bang up to date with the situation, he’s had the pre-op appointment just waiting for the consenting meeting.
Now the fun part. Not!!
The Operation Day
The operation went well, the end!
In a nut shell that is how it seems so far, having met him in recovery earlier than expected all looks well.
We met the junior consultant about four weeks ago for the consenting meeting. Waited the obligatory two hours past our appointed time and listened to Mikey happily count the days down.
He was admitted the night before the operation and was still very upbeat and chatty as usual.
It was obvious to see that things kind of hit home and became more real when he was cannulated ready for the morning.
He started to look shocked and wasn’t so forth coming with his knowledge of Apple’s latest operating system and the new Android N!
It was agreed that I was to spend the night at the hospital with him in his own private High Dependence Unit room, on the fold up bed and a wafer thin pillow.
We watch a bad film and went to bed early.
He was woken at a time that Mikey wasn’t aware actually existed, very rarely has he seen 6am and there wasn’t a foreign holiday as a reward.
Mum arrived at 7am and we made Mikey relaxed, then ruined it all by saying that he had to wear a hospital dress and white stockings. Mum shot me a look when I said he was like a character from a David Walliams book!
There was another operation booked before Mikey but this was quickly rescheduled allowing our son to be first.
The surgeon sat with us and again ran through all the things that could go wrong but mostly all being about a 1% risk. The 1 in 700 chance of him paralysing our son still seemed worth it.
Then he was wheeled off to surgery with us in tow.
The aneasetic was administered and within seconds and not being about to finish his sentence about letting his scout leader know he won’t be there tomorrow, he was asleep.
This is when ‘it hit home’ and ‘became more real’ for the parents and with him unable to see just how frightened, nervous, worried you are and annoyed that it has to happen your child, you cry a little.
The coffee shop across the way seemed like the best place to take stock and wait for the father-in-law to come back and collect us after I had sent him home thinking the operation would be later on that morning.
We were told the operation would be about 6 hours long and to come back about 3pm when Mikey should be out of surgery.
What we didn’t bargain was spotting the surgeon in the same coffee shop, not realising that the 6 hours must have included his breakfast!
We leisurely prepared ourselves to arrive back at the hospital at the agreed time, then received a phone call saying that he was in recovery and had woken at about 2pm.
Hastily the rushed back to the hospital annoyed that we were given the wrong time and our boy would wake up all alone.
As his parents we should have come to know our son over the years and be able to gauge his reactions and feelings but no, every day he surprises us and this was one such day.
He looked happy and well like his normal self with no indication that he has had extensive spinal surgery.
Within a few hours he was sat up happily woofing down the hospital food, seriously who does that!
He complain slightly about some slight back pain but all fine.
Ok, he has been hooked up to machines most of the day with tubes coming out of all sorts of places.
It’s now 4am, I gave up on sleep at about 2am.
All is OK apart from his blood pressure, the nurses have been in and out every 30 minutes trying to increase it.
Mustn’t grumble, the doctors, nurses, consultants and aneasetists have been fantastic I can not thank them enough. Why are they all so small?
Well I have broken his spine five times
After a few days in the high dependency unit, Mikey was moved to a normal ward as he was out of danger.
This wasn’t the best of wards sorry to say, I supposed we were a little spoiled in the HDU.
He was OK, doing really well but in a lot of pain.
The only thing that helped to alleviate the pain was to walk, which was great for his recovery.
Three more nights of hardly any sleep, shouting, crying and not knowing what to do with himself and he was home.
He left with enough drugs and pain killers that we thought we could open our own pharmacy.
Like in the hospital, he would have episodes where he was in pain for up to three hours, where he couldn’t stop the pain.
These episodes do involve him being completely unreasonable, where every suggestion is the worst possible suggestion.
‘Do you want to sit down?’ NO ‘Do you want to lay down’ NO ‘Do you want to stand’ NO STOP BEING MEAN.
This is very hard for all involve and very hard to not tell him off for talking to his parents that way.
When he is like this he is just very grumpy, during one pain episode I did say that whilst in hospital he may have contracted a serious case of the Grumps.
He didn’t find this funny!
I have found that if we can make light hearted jokes about it, it will stop us from going insane.
We have made him comfortable on the sofa with a pillow for his head, where he sits most of the time.
This is great but I would like to have a few choice words with the inventor of the pillow.
If I am sat near Mikey I have to rearrange the pillow every few seconds.
‘Not comfortable’, ‘Try that’, ‘Not comfortable’, ‘You haven’t even tried it yet’, ‘Not comfortable’, ‘Try that’, I’M NOT COMFORTABLE, MUM, DAD’S NOT DOING IT RIGHT’
If anybody knows the whereabouts of Mr Pillow, tell him I’m looking for him.
Once Mikey has had his intake of enough pain killer to sedate an elephant, he is calm, for a bit.
He isn’t sleeping very well, he is quiet but every two hours he wants to know the time.
It’s been about ten days since he has been home and the pain episodes are down to about twenty minutes.
He isn’t as grumpy and isn’t on as many pain killers.
He has been back to see the spinal nurse who has redressed his wound but was a little concerned as there is a slight infection.
He was back again to the hospital this time to see the surgeon.
Apart from one of the nuts in his back coming loose, he wasn’t too concerned.
Mum mentioned about the amount of pain Mikey is still in and was this normal.
His reply was ‘Well I have broken his spine five times’ so yes.
We were told that he is probably doing too much and to take it steady.
He has been given some morphine to help him sleep and he has not moved for ten hours.
He is a very brave small man and just imagine what you would be like you had the same operation.
I don’t think he should have a nut and bolts poking out his back
Well Mikey had his operation back in March and it’s now November.
Things aren’t too bad apart from his sleeping.
He claims every morning and before he goes to bed that he can’t sleep.
He finds it very difficult to get himself comfortable on the sofa.
To be honest we are not surprised as it looks as though at least one maybe two or three nuts and bolts have worked themselves loose and are protruding out his back.
We have had this checked out and we’re told that if the skin is broken, then he may have to have the operation again.
‘Aw, poor love’ I hear you cry.
No no no dear reader, more like:
‘What in gods name is wrong with this world!’
Not only was Mikey in excruciating pain for many months.
His family and him we’re put through hell and his education suffered.
Having the operation again is a massive massive issue for anybody, let alone Mikey
‘Hasn’t he had enough operations’ I hear you cry.
Oh but no!
We’ve had his feet and legs checked out as he seems out of alignment when he walks.
Not to worry we were told, a little corrective surgery will sort that out.
Only its on both legs and both legs have to be done at the same time.
So casts on both legs for six weeks!
Then when that has been sorted, some corrective surgery on a foot.
#@&!?
Future conversation alert:
‘So this year Mikey had his back done, we can’t decide on what next either this legs or back again.
So that’s 2017 sorted, 2018 again either the back or legs then that would leave 2019 for his foot’
Hay ho, mustn’t grumble, there are people out there with far worst issues.
It’s just not fair, as he has his learning difficulties to deal with too.
Whenever I see his back, I just think if I had that poking out my back I would be well annoyed.
I’ve tried ringing the hospital this week and just awaiting a call back.
Appointment has come through for December, so fingers crossed.
I need to remove one of his spinal rods
Karma has a lot to answer for.
I’m a firm believer in it and I’m very protective of it if people start to question it.
Today even I am starting to turn my back on my old friend.
Being told Mikey will need to have spinal surgery again is like being kicked where it hurts.
Unless I’m about to win the lottery ( that I don’t partake), I don’t know how things are going to balance themselves out.
Mikey has suffered for so long with his kyphosis and the pain of the surgery, it just isn’t fair on the poor guy.
After a few times trying to get through to the surgeon’s secretary, I was able to express my concerns to her and how I felt Mikey needed to be seen.
We arrived at the hospital appointment in good time only to be told to go to another floor for an X-ray.
Not sure why we don’t get told this in a letter ahead of time as Mikey finds this difficult to comprehend, in fact so do I.
Anyway, Mikey had some X-rays and was able to keep his clothes on, amazing that you can X-ray through your clothes.
I have seen an X-ray of Mikey’s recent metal spine but not as clearly as this before.
We were seen not by the actual surgeon but another guy who had the new X-ray and the one from September up on his screen and it was obvious to see the difference.
Mikey has two metal rods in his spine but one of them has not fused itself to his spine and has moved.
The consultant said the rod would need to be removed and reset with more screws and nuts and bolts to hold it in place.
Quite early on after the operation, a lump had appeared at the top of Mikey’s spine.
We had it check out and we were told it would only become a problem if it broke through the skin.
That was supposed to put our minds at rest how?
The one lump has turn into three lumps and the original protrudes out about 2cm.
Over the months it has been causing him pain and discomfort and I’m not surprised.
To give Mikey his due, he has complained about not sleeping or able to sit back comfortably but he has been amazing and taken it all in his stride.
Most people, included me would be saying ‘What in god’s name is that poking out of my back, you can bloody well sort that out mister bloody surgeon. Are you going to apologise for not performing my operation properly? Just get your wallet out and let’s see what you’ve got.’
Mikey was off school for three months earlier in the year and it looks likely to be another three months off school. This certainly is going to affect his education.
As Mikey is in a special school, at least he isn’t doing any exams as these would be seriously affected.
Still this is his last year at school and still an important year.
Mum and I are getting anxious but not too worried about work commitments this time around as Mikey is our top priority.
We are beginning to get a little concerned about Mikey’s sister as she doesn’t seem happy.
It could be early teenage grumps just hope she doesn’t think it’s all about Mikey as this isn’t the case.
It’s difficult to care for a special needs child and to care for a mainstream child. Let alone a girl!
So we were told he could have the operation before Christmas which is great as we don’t have to wait another eighteen months.
As it is already December, there isn’t long to wait but I hope it doesn’t disrupt Christmas.
We don’t have a problem with the operation being over Christmas as Mikey should be well for our two week summer holiday.
We were really annoyed not to have a foreign holiday this year as the sun would have really helped Mikey’s recovery but it wasn’t to be.
Mikey has been telling people that he has to have another operation and his Autistic traits are going through the roof and I think he is going to ask me every day when his operation is.
It’s a good thing that he may have forgotten about the pain, screaming and shouting.
I almost forgot too until I re-read my own blogs.
This week Mikey has been offered the 22nd December for his operation.
This has completely thrown us as he really needs the operation but nobody wants to be in hospital on Christmas Day.
We discussed bringing Christmas forward a week but it is Mikey’s sister who it will affect the most.
We will do our best to keep Lucy happy but going backwards and forward to the ward isn’t going to be good for the family.
I turned down the date and awaited a new date.
There was a meeting today about the operation and the surgeon is adamant that the operation is on 21st December, I had to say no.
I was told that the surgeon is very concerned that the metal rod will break through his skin.
It’s a bit of a risk but I opted for the next available date which is the 5th January.
The Operation Day 2.0
Mikey loves numbers, especially decimals.
Like IOS 10.2.2 for example.
So with this blog being called The Operation Day 2.0, it might give him some comfort.
Well we are back here again, everyone involved in the running, caring and the upkeep do a fantastic job but that doesn’t mean we like being here.
We were worried that Mikey’s recent seizure could have hindered his chance of having the scheduled operation.
He also has had a terrible cold but it has still gone ahead.
Mikey was getting a little anxious recently and I wanted to take his mind off of the operation, so we have been kept busy with metal detecting and flying his drone.
We found lots of screws and nails down by the seafront and he even managed to land his drone on the village hall roof!
On the morning of the operation Mum rang to check if there was a bed available only to be told that there was high chance of no beds being available but to come in anyway.
Everyone was expecting him and quite a few nurses remembered him from March. (I’m sure he would much rather be remembered for something better than being in hospital before)
Very calmly his back was examined by nurses and even the surgeon and the decision was made to perform the operation now.
All surgeons are superheroes but this new surgeon was very nice, a bit bubbling and had an inability to finish his sentences.
Very much like, ‘So we are going to …… and replace the…. in his….. and he should be right as…..Ok?
Still a very nice and caring……
He told us that he was going to extend the metal rods in his back and attach them to the T2 and L1 vertebrae.
Afterwards he told us that the rods were removed and new ones fitted to the existing screws.
He was cannulated and prepared by many different people.
Without realising he was called for as the team were ready for him and I could see the realisation had kicked in again and Mikey knew what was going on.
Still he was dressed appropriately in his surgical stockings and gown topped off with his trainers and fleece, off we went.
We held his hand tightly, as Mum and I held hands tightly too.
Just a squeeze of a hand can let a loved one know so much and offer reassurance.
We had already met the anaesthetist as she was now becoming his usual anaesthetist.
Again he was pumped full of drugs, we watched and listened to him tell us about ice cream and he was gone. Then awake. Then gone again. That is so Mikey.
Mum and I wiped the tears away and left him.
He never gets left alone. We always ensure that someone is always with him, caring for him so that is one of the hardest parts of the process.
Mum and I had breakfast, we looked out for the surgeon in the cafe but this surgeon was in with Mikey and not getting a bacon sandwich like the last one.
Mum tried shopping but even this wasn’t taking her mind off of Mikey.
We sat and waited for four and a half hours reading about how our so called Facebook friends were not having the best start to the day.
We read the comments, counted how many times babe was mentioned and sarcastically hoped she was being brave, Babe.
We met him in recovery and he was his normal smiling, happy self.
Not even extensive spinal surgery is going to faze my boy.
Apart from swollen eyes, dry lips and looking smaller and helpless, he was ok.
The surgeon said he found a small bursa and sent it for a biopsy.
He was taken to the high dependency unit where he wouldn’t give in and sleep.
To him, finding out about the new technology exhibition in Las Vegas was far more important!
Mum left us as it was decided for me to stay with him again as this works better for the family.
After a night of hourly observations, beeps, blips, Darth Vader sounding inflatable leg things, a change of stocking and ‘What is time Daddy?’, it was morning.
I had forgotten what one and a half hours sleep felt like bit I wasn’t here to sleep.
I monitored the nurses movements and chose my time to go and freshen up in the morning, thinking that I wouldn’t be missed.
On my arrival back, I met the surgeon who told me he had a good night, there had been a nurses hand over and I was told all was well, the night went well and they had fed him his breakfast.
Nobody had realised I had stayed!
After two and a half hours sleep and picking Lucy from school, I’m back.
He has been moved from the HDU and in the baby room awaiting to be moved to a quieter room. ( That’s not going to happen!)
He has been asleep for two hour now and I’m here thinking how brave he is, how well he is doing, how he can ask the time in his sleep and why?
Tears and fears and feeling proud
Mikey’s operation went well and he is recovering well.
He always has a smile on his face and if you ask him if he is OK he will smile and say ‘Happy now’. It is getting more and more difficult to keep our happy facade up with as he is going through so much and being in so much pain.
We were told that the Kyphosis was worse than originally thought and that is why the operation didn’t work the first time.
The surgeon has introduced more of a curve to his spine but it means he may never be able to hold his head up straight.
This makes me so sad I cry when I think about it, like now.
I feel so useless as there is nothing more to help with his pain or to help him sleep.
Mum and I will do anything to help other people, we just like to help.
The problem is, we are seen as people who are coping really well and don’t have any problems of their own.
Wrong!
It’s very easy to help other people and make sure they are well because it takes our mind off of our own problems.
His First Seizure: The Mute Spirit
Christmas had been great.
We met up with family and friends and all enjoyed the festivities.Mikey had been staying up later, so I would let him sleep in like what most teenagers like to do. So on the Friday just after Christmas I came up to wake Mikey as I thought 12 o’clock was late enough to stay in bed. He woke OK and asked the time. I said it was twelve but he grabbed my watch and corrected me and told me it was 11.59am and I was wrong to say it was twelve. (Good old Autism!)He asked me to help to put his T-shirt on as his back is very painful and it isn’t long until his second spinal surgery.
This is when it happen.
He just stared at me with utter shock on his face and just said Daddy.He then let out a gut churning groan, nothing I have ever heard before.He flopped down onto his pillow and started to twitch frantically.His face was twitching the most, mainly around his left eye.I have never been so frightened in my whole life.
My first thought was that the metal rod in his spine had broken through the skin as we were told this could happen if the operation doesn’t come soon enough. I called out to Mum. I ran to the annex to get Nanny whilst screaming to Grandad to call an ambulance .We were all at his bedside now wondering where the blood had come from and had he bit his tongue. His poor sister was so upset as she didn’t know what was going on nor did we. Mikey was in some kind of coma and his breathing was very slow. The operator informed us that an ambulance had been dispatched but stayed on the line and to find out if he was breathing. A few minutes later Mikey tried to sit up as he had come out of his so called coma and was very confused. This happened just as the paramedics had arrived. We asked if he was OK but he didn’t answer, he was just too shocked to speak and we were beginning to think could he speak ever again.
He was checked over but was to be taken to the hospital as it was so random.
We spent most of the rest of the day in the hospital.
He had lots of tests but the cause was unclear as it didn’t tick all the boxes to be just one thing.
I’ve spent the last few nights asleep on his bedroom floor worried it may happen again.
I just can’t believe what happened and that luckily I was there to witness it and help.
It will haunt me for a long time as I really thought he was dying.
I have been doing some research on the matter and I have discovered that a third of boys with Autism have epilepsy.
This is beginning to make a lot of sense now but it would have been nice to be told this!
Seizure 2.0
Seizure 2 wasn’t as traumatic as the first, thank god but still scary.
Mum had gone in to wake Mikey as he does like to stay in bed a long time.
He claims every morning that he wasn’t able to sleep and he never wants to get up.
If he has had a late night, he is grumpy and can be a bit mean to people.
This morning was just a normal morning.
I was already up when Mum called down from upstairs.
She calmly called down to say he may be having a seizure.
We both know that this wasn’t life threatening so to stay calm.
Think of a duck, calmly moving on the water, very graceful, slow and peaceful,
Under the water it legs are frantically moving in kind of panic.
So we calmly entered his room, staying relaxed and at ease, which was pretty difficult when our son is frothing at the mouth.
We held him knowing that he was in a coma like state.
We glanced over to each other knowing that we both were not calm, collective and at ease.
We called the paramedics as this this what were told to do after every seizure.
This breathing was very loud not a snore just like he was very very asleep.
We were told that one seizure in teenage boys is really common but now he was having another one, this was a game changer.
The paramedics came, who were amazing people and checked Mikey over.
He was awake now and was very confused, as you would.
He was very quite and this really frightened us as we thought he had lost his voice.
He slowly came around and back to normal.
He was checked over and he was OK.
The paramedics took me to one side and said that two seizures is still quite common which put my mind at ease.
He advised me to take him to the children’s hospital as this was the procedure.
We both agreed that it would be a long weight and probably nothing will be found.
Mum and I decided not to take him but to take him to his GP the next day.
The paramedics stayed for about another hour making notes and waiting to see if he was OK.
We sat in the lounge with them trying to understand what is causing the seizures and how frightening they are to us and Mikey.
He came down the stairs and was quiet, not quite himself but OK.
As he came into the room, his internet based speaker had lost connect and randomly said “I’m sorry but I don’t know what’s going on!”
Me neither.
The Very Delicate Operation
Mikey isn’t a newbie when it comes to operations, there was another operation that was, shall I say interesting.
I had been working for a company where every two years the public were allowed to roam around the factory to see how their precious caravans were put together.
This is great for the consumer but for the members of staff this means having to present a well rehearsed speech highlighting the virtues of their particular section of the caravan construction.
Having not wanted to give up a Saturday with no pay, the scripts were ‘improved’ and certain random words were added to the speeches to enhance them.
By the end of the long relentless day, the random words had now become sentences.
It was my turn to try to squeeze the sentence ‘I recently had a very delicate operation’ into my speech.
I managed it perfectly without the unsuspecting public ever noticing.
I was a god, it was brilliant, friends were impressed as it was so funny. I mean, just image having a very delicate operation, that’s hilarious!
It wasn’t long after that Mikey had a not so funny delicate operation on his penis
He expressed some discomfort when passing water, so this meant whipping it out for the female GP to examine.
She noticed there was something not quite right but this could easily be rectified with some cream.
The cream had been lathered around the nether regions probably twice before we were hurriedly advice to take him to the the A &E department for the first time, on the advice of the out of hours GP.
A friend of mine once had to glaze the windows of an abattoir and was put off meat for quite a while because of the hollowing noises and screams.
The screams, screeches coming from Mikey were I’d say right up there with the pork production area.
I’m not one to make a fuss so we sat patiently as we were told to wait our turn.
It wasn’t long before I was back at the reception desk stating that that Banshee like sound was in fact my son.
I accepted that the waiting area was full of ill people but I was pretty certain Mikey was in more pain that most of them.
An actual trained professional had heard the noises and agreed that Mikey was in pain and action was needed to be taken.
His Corpus Spongiosum had narrowed and he was unable to wee.
He was given some gas and air and told to lie there and just wee.
All done, all sorted. That’s all it was, off you go!
We were back the next morning!
The screams were louder this time and more gut churning than before.
This is where I should introduce Peter!
When I was a child my Mum needed a name for my appendage, so she opted for Peter.
So ‘he’ was referred to as my Peter.
When Mikey was born along with him Peter was born too and has played a very big part in his upbringing.
So much so that he is no longer Mikey’s Peter, he is just Peter.
I remember being at some party discussing this subject and having too many wines, I asked Mum’s work colleague if he had a name for his Peter!
So, Peter was in trouble.
He wasn’t working properly.
The noise was so bad that Mikey was removed from the waiting area and asked to wait in a room with a bed not to disturb everyone else.
We thought this was great, as surely by given a room he would get treated soon. Right?
The screams continued, the tears kept coming, but I had a plan.
Just outside the room were the gas and air canisters.
I would creep out and swipe the bottles, bring them into the room, work out how much to administer and get Peter to work properly.
The time had come, even Mum backed up my plan. I opened the door and grabbed hold of the trolley that held the canisters.
It was at this exact same time that a doctor required the same pain relief.
I had to explain my actions like a guilty school boy, only to be told that the gas and air was needed for a seriously ill child with a life threatening condition.
Peter had to wait!
Peter was seen, examined and reassured that an operation was needed immediately.
So the operation went ahead to cure Peter’s problem but we were told that the possibility of it not working the first time was very high.
So, we were back again to have the operation again, but in the meantime it was discovered that one of Mikey’s testicles had not descended.
Anything else we asked, as there couldn’t be anything else, could there?! Not really we were told but he will have to be circumcised!
The operation was fine Mikey was OK and we were home in no time.
The only problem being was that Peter was scared to wee.
The memories of the pain were still with him and Mikey.
A hot bath did the trick and this was the only place were Mikey could relax and wee.
This though was the only place where Mikey could wee for a few weeks!
Mikey isn’t a very good patient to say the least.
Maybe it’s his special needs that affects his senses and he isn’t able to process pain properly, I don’t know.
When the pain got too much for him, he would scream, shout and tell be he hated me.
I know he didn’t mean this but it was very hard to hear as we were all doing our best to help.
What didn’t help were all the bandages and scars around Peter, it was carnage down there.
Being a bloke this made my eyes water just thinking about it.
Apart from the scar tissue occasionally getting stuck to the dressing and having to prise them apart, things were looking up.
We decide we needed a short break away to cheer us all up and as Peter was better it would be fine.
By the time the excursion was upon us, apart from the scar tissue having a tendency to stick to Mikey’s pants, things were fine.
Mikey was now able wee without the need for a bath and was very please with himself.
We would cheer when he needed to go.
We got to the hotel and Mikey was ready for a wee, hurray we cheered.
The trousers were off, thumbs in the sides of the pants ready to remove them in some dramatic The Full Monty kind of way.
We had all kind of forgotten about the scar tissue sticking to the pants in all the excitement.
The screams, the shouts, the blood, the mess was almost too much to handle.
We got through it though and had a nice day, we just needed a late lunch.
Mikey wanted pizza, so pizza it was.
We were given a table near the toilets, I would normally complain about this but if Mikey needed to go, he didn’t have far to hobble.
The time had come for Mikey to wee.
He was going to need some help so off we went, neither of us not looking forward to what we were going to find.
Yes you guessed it, Peter was stuck to the pants again!
I had a job to do but with the acoustics of the toilet, this was going to get loud.
Mum and Lucy were sat in the restaurant quietly waiting to be served whilst I was trying to decide if a quick yank or a slow peel would do the trick.
Mikey’s screams echoed through the pizzeria along with ‘Don’t you touch me there’
‘Get your hands off me’ and ‘ You’re hurting me’ and ‘ Leave me alone’ and ‘I hate You’
I didn’t need to be told the whole restaurant had heard everything, it was their looks and stares that gave the game away.
We ate quickly and silently and left, never to return.
Mikey and Peter have both made a full recovery.
A Grand Entrance
Mikey’s birth was traumatic for everyone involved.
Mum had gone backwards and forwards to the hospital with blood pressure issues before hand, so I suppose we should have known.
Now, Mikey has only ever wanted to do things in his life in his own time, this does include coming out of Mum and saying hello to the world.
The only way he was shifting himself from his cosy cocoon was to induce his Mum. Cool right? Not!
We didn’t know what inducing was really all about, I suppose this is a good thing because we would have thought twice about it if we knew.
We thought it would be a gentle persuasion just to encourage him out.
Unless you call utter shock, panic, pain with a big dose of ‘What in the world is going on’, a gentle persuasion, then you must be a weirdo.
They started the insertion of the pessary on Valentine’s Day but I think Mum would have preferred a more romantic night.
Several insertions later on the next day, he was ready and I mean ready.
Never has a child ever been so ready.
None of this, asking them to hurry up as you want to go out and still sitting there an hour later.
Oh no no no. He had his shoes and coat on and was storming towards the door.
Now, there is a reason why babies don’t come with a manual, the simple reason is, every birth is different and obviously he was different.
Nobody would dare write a manual about the possibility of a Mikey birth because the world would cease to exist. No one would risk the possibility of having that kind of birth. They would be crazy to even consider giving birth.
What started off as a very quite evening in the hospital ward, occasionally uttering ‘Anything yet, as I have to leave soon?’ To stomach churning screams and ‘ I don’t care about my birth plan stating no epidural, I want every type of pain killer NOW!!!!’
As Mum’s screams started to ignite other births on the ward, my job was to hunt down the ward nurse and get help.
I found the nurse, quietly sipping on her last cup of tea before she clocked off at the end of her shift.
Politely I highlighted that my wife may be in some discomfort and could she have something to ease her pain.
As the ward shook with screams, profanities and Exorcist type of thrashing, Mum was allowed a Paracetamol!
Within a minute I was back at the nurse’s station bravely telling the now half coat on half coat off nurse that I’m no nurse but that noise tells me that a baby is a coming.
She now agreed!
There was a short discussion about who was going first as Mum wasn’t the only screamer on the ward now.
Then off we went to the delivery suite.
Delivery suite, it sounds so sophisticated, perhaps it normally is.
I was loaded up with bags, coat, shoes, drinks, magazines, snacks and Valentine’s Day flowers, following a very scared Mum being pushed in a wheelchair.
Now Mum is a very well educated polite LADY
Mum was no longer a LADY but a screaming, swearing thing!
She would have fitted quite nicely into an afternoon episode of The Jeremy Kyle show.
Mum was scared, I was scared but we didn’t know any different so we both thought this is normal.
We made it to the delivery suite swiftly and mum got onto the bed and was handed the gas and air tube to inhale.
She stated that it wasn’t working but was told to relax and try it again.
She tried again and as before said it wasn’t working. A few knobs and gauges were adjusted and Mum was asked to try again.
Now, Mum didn’t mean to shout and swear but she wanted to highlight in her state of shock and pain that she wasn’t being administered any pain relief.
Having wanted to try the gas and air for a long time, I tried but unfortunately Mum was right.
As Mum was being made ready for the birth she turned to me, looked me in the eye and uttered “I love you”.
Followed by ” Now get out!”
I did as I was told not to cause any more stress to my frightened wife and stood outside the door.
I was quickly spotted by one of the nurses and asked what I was doing. I said I was ordered out and was doing what my wife asked me to do.
She smiled and said I should get back in.
Reluctantly I peered around the door and was greeted by a paradox!
Mum was radiant, full of smiles and pleased to see me. Huh!
Mikey’s heart was monitored and I felt useful letting Mum know how many beats there were and informing her what the read out looked it. Mum thought I was annoying and told me so.
Things had calmed down a little until I noticed the look on the ready to go home nurse’s face.
I hadn’t noticed the heart beat monitor was now silent at first, I wasn’t even sure how long it had been silent for.
The nurse said that she needed to pop out and would be back soon.
Mum started to panic a bit and wanted to know what was going on.
I couldn’t answer honestly because I didn’t know.
Things were just a bit of a blur then super Mid wife appeared!
The handover had finally happened and we were in the hands of a energetic refreshed nurse.
She wasn’t having any of this messy around, she wanted him out there and then and she did.
There was this tiny, tiny feeble little baby boy who was the strongest sperm in gang and the one who made it.
As I gazed into eyes planning his life out for him, there was a faint voice in the background but was drowned out by the dramatic movie music in my head.
If I had listened to the faint voice in the background I would have realised it was Mum’s voice.
She was letting me know that she had a retained placenta and was off for a serious operation.
I’ve had a Frank Spencer moment
As Mikey is recovering from his operation, fresh air and a family day out is what he needs to feel better.
We decided to have a nice stroll along the sea front but as it could be too much for him we took along a wheelchair.
His Sister had also decided to bring along her skate board to get some practise in.
All was well, Mikey being pushed along by mum and me running along beside Lucy to ensure she didn’t run anybody over with her clumsy skateboarding.
I few times the skateboard shot out from beneath her and ran towards unsuspecting people also enjoying their stroll.
Mum had gone ahead with Mikey leaving Lucy in her capable hands of her father.
As Lucy is probably the most clumsiest person alive it was only a matter of time before an incident would happen.
Lucy was heading towards the sea wall and was in trouble, so as the concerned, caring father I am, I ran to save her.
Just as I was able to reach her, the skateboard shot out backwards beneath her, sending it in my direction.
Before I had change to know what was going on, my foot came down onto the skateboard, sending the skateboard and me up into the air.
I landed mostly on lower back (bum) and my wrist.
Lots of very concerned people hurried around and believe it or not, done of them were laughing.
Mum had heard the commotion and spun around to see me flat on my back in full view.
Her first words were, “You were not on the skateboard were you?”
People soon realised that I was with the lady with the child in a wheel chair and utter the words, “You poor woman.”
I was still on the floor, being told not to move and I was beginning to feel sick.
I was helped up and sat me down on the wall whilst I composed myself.
Lucy commented on how green I looked.
After a few minutes I was able to make it back the car but had to sit in the back as this didn’t hurt so much.
I’ve left it three weeks before I went to get it check out by on GP, you don’t want to rush these things!
Our GP is very matter of fact and when I said I had a Frank Spencer moment she wasn’t interest and sent me on my way.
It still hurts now but certainly no way near as painful as Mikey’s spine problem.
Four month later update:
Pain beginning to go.
Copyright © 2018 Jason Perkins