Disability Diaries : The Spine

Back in some part of 2014, my son - J1 - who suffers with quadriplegic cerebral palsy, was referred to a spine specialist with suspected scoliosis.  This completely threw me through a loop and I seriously went into melt down.  After the first appointment, when we were given a very thorough and clear talk about why he had been referred and what they were looking for, what could potentially happen and the probable timescale of this, I did what any self-respecting special needs mother does.  Went home, had a little cry about the unfairness of it all and then pulled myself together by processing the information.

A special needs mother doesn't get long to linger and wallow in self pity - there is too much to do.

For the last two years we have been back and forth for check up's with the spine surgeon and true to what was predicted in the first appointment, they have been just that, monitoring appointments.  He has X-Rays taken (never easy when a child can not sit up unaided), the specialist looks at them on the computer screen, feels down his back, spine and ribs, looks at him sitting in the chair from all angles, then addresses us, the parents.

"It's definitely getting worse.  Would you agree?"  Begrudgingly, we do.  At this point he usually says it's still not imminent for surgery and he will see us in six months time.  We leave the building and breath a huge sigh of relief, while the only thing J1 is concerned with is whether he can have a sneaky McDonalds for lunch.  But we do understand it is only a short term reprieve.  Just another chance to come up to the surface of the water and grab another mouthful of air.

Only, last time the Specialist diverted from script.  This time he 'hmm'd' more than normal, looked at the X-Rays more frequently and for longer.  Checked J1's age - twice.  As he ran his hand up and down the spine for a third time, he said "I think it's time for J1 to go on the surgery list.  Don't you?" 

It was like the air had been sucked out of the room and I what I wanted to say very petulantly was "No, actually, I don't think it's time, you are not going anywhere near my son's beautiful spine.' and knock his hand away. 

But I didn't, because I am a grown up and after two years of processing the information I have finally and rather ungraciously accepted the fact that my son is going to need spine surgery. 

Nevertheless, the specialist ploughed on warning us there is a fairly long wait list (about a year) and lots of appointments and check up's to go through at the hospital before it would happen.  Plus he would be seeing us again for another check up in six months time.

Six months time is now here.  The appointment is in two weeks.  Sleep is harder to come by all of a sudden, it feels like our grace period is coming to an end.  J1 is completely oblivious to the enormity of it and I am torn if the best thing to do would be try and tell him about it, to explain or not.  Sometimes I wonder if he could comprehend it and other times I think, not a chance.  He is such a worrier.  He can fret about something as small as a change in school bus pick up time for a month before it happens.  Would I be crueller by putting this into his mind, or keeping him in the dark?  How can I expect a 13 year old with delayed learning to process it when I am still not sure I am ready to face it?  You see, nothing prepares you for this shit. 

As a parent of a child with special needs you have to be accommodating in who you put your trust in.  Most of the things your child will go through within their life you start off having no idea is going to happen.  When you get a diagnosis, you think you are in the know, but you aren't.  They don't warn you about the weird and wonderful consequences of what not being able to walk creates - deformed hips, collapsed ankles.  They don't tell you that because your child has no trunk control his body weight will pull the spine out of shape and crush his pelvis. 

I guess they don't because it would just be too overwhelming.  Who could cope with finding out all of that?  They let one thing come at a time so you can digest it, process it and accept it.  They give you that chance to get to the surface for air. 

I guess at times like these, with the spine surgery, there is just one thing to do.  Prepare ourselves for it.  We are going to have to take a bloody great oxygen tank down with us and make it last.  Be strong, get through it, be the voice shouting in the corner for our child - because as a parent of a child with severe physical disabilities and special needs it's what we have to do.  There is no other option.

But sometimes, you do need that good cry first. 

   

What Has Made Me Cheerful This Week

It was my intention to do lots of writing this week, posts and otherwise but unfortunately I have had no time to do so - best laid plans and all that.  However, no time like the present and I like to think about the positives of my week, even if it is the only thing I get to blog about.

 

This week Reasons to be Cheerful is being hosted by Becky at Lakes Single Mum so hop on over to see her if you want to read posts from other cheerful souls.

 

After another week has sped past in the blur of an eye, these are my reasons to be cheerful :

 

* Pregnant friend number two has delivered a little boy safe and well.  The fabulous couple now have a daughter and son and are very happy.

* My brother and his wife were part of a wedding party at the weekend so I got to spend time with my beautiful nephew SJ.  It was extra special this time because it is the first time J2 and SJ have really played together nicely.  I think SJ has been too little before now so to see them interacting was great.

* I have seen two of my best friends this week.  Monday was spent hunting for Halloween costumes and having lovely coffee and cake with Mrs B-R and today was spent visiting one of my oldest school friends and her baby boy JK and discussing (very excitedly) wedding plans.  Thrilled that I will be Bridesmaid for her next year and we booked a date in our diaries for her to go dress shopping.

 

* Hubby had his tummy assessment.  Although it isn't great that he is having the issues he is having it is good that they are being taken seriously and investigated.  The horrible part is now out of the way and we just have to wait for the results.

 

* I had two treats this week.  The first was a long overdue hair appointment.  It was lovely sitting in one place for more than 10 seconds, being brought coffee, biscuits and magazines.  The second was a surprise from the Hubby - a copy of the new Masterchef Food Bible.  Just having the page of weights / measurements etc in the front is worth its weight in gold.

 

* Even though I can feel a cold starting to break out I am happy it is this week and not next, when the Hubby and I have a night away in Portsmouth so I can participate in The Great South Run.

The Disability Diaries (The Life of J1) : The Operation Part One

This particular 'Disability Diaries' post has sat in my drafts folder for some time.  This, I know, is going to be one of the hardest posts I have to cast my mind back over to write.  But it needs to be written.  I daresay I am going to have to write this in portions, in order to cope with reliving this period as it was one of the most traumatic of both mine and J1's life to date.

The first indication that something was happening with J1's leg, was that whilst laying flat his left leg would 'scissor' across the right one.  We would constantly uncross it, but it would fly back almost immediately.  The next happened whilst undertaking our physiotherapy regime.  When it came to exercises on his left hip we would hear a very distinctive 'click'.  After a little while J1 started to wince.  When this happened I knew we had to report it.

We were referred to Orthoapedic department for further investigations when J1 was three.  The Doctor did a thorough examination and requested some x-rays.  I was told that J1 would require surgery and that an appointment would come through to us.  Fast forward about a year and we were still waiting for an appointment.  Not being thrilled at the idea of him having to undergo surgery I had not pursued it, but as the discomfort for J1 because clearly more painful I knew I needed to take action.

After numerous phone calls it was established that J1 had 'slipped through the net' and that he would be put at the top of the list.  An appointment promptly came through for while we were on holiday.  After more phone calls a date of 4 July 2007 was confirmed.  I sailed along to this date, trying not to think about things too much.  I had no idea of what J1 was about to face.  J1 had no idea of what he was about to face.  In this case ignorance was bliss.

We arrived at the hospital early and I was told that J1 was first on the list so would be going down to theatre around 9am.  It had been difficult to ignore J1's indications for food and drink, so I was glad that he would be going fairly quickly.  If only that had been the biggest difficultly, we would have been laughing. 

J1 was only four years old.  His only words were 'Mumma' and 'Hello' so communication was mostly guess work.  He had no clue about what was going on.  The Doctor came to see us and noted that since the X-Rays were over a year old he really had no idea what he would be facing until he started the operation.  Firstly, he said that the 'scissor' effect was being caused by the muscle on the inside of the thigh tightening and shortening.  He would need to open the thigh and cut the muscle to try and release it.  Secondly the hip, because it wasn't being used for walking, was growing in the wrong way.  The bone was forming out of shape.  Therefore he was going to have to break the hip, put in a metal plate and reset it.  The third thing that may have occurred, I was informed, was disintegration of the ball socket. If this was the case he would have to try and rebuild it.

But it was all an unknown quantity as to how 'bad' all three of these issues had developed.  I curse myself to this day for being a coward and not chasing the operation date sooner.  Of course at the time I nodded and agreed with the Doctor pretending I fully understood everything he was saying.  The only thing I really understood was that it sounded horrendous.

As is standard procedure for operations I had to sign a consent form.  The Doctor rattled off all the things that could go wrong, reactions; infections.  Words swarmed around my ears as a pen was pushed my way.  I looked at the signature spot.  I had no option but to sign it, but felt I was signing to say 'Yes, do these awful things to my baby.'  I asked the question of 'What if we didn't have it done?' and was told that the hip would continue to deform to the point where even sitting would be extremely painful let alone any type of other movement.

As I signed I realised the true enormity of being a parent.  I had to see my child through this.  I had to be strong and let them take him down to theatre, happy and smiling clutching his 'Brown Bear'.  To hold him while they tried to get a line into the tiny veins in his hand to administer the 'magic sleeping milk'.  To be strong enough to let him be whisked off of my lap and ushered out of the door the minute his eyes closed.

I was told to expect to wait about two hours.  I would then be informed when he had been taken into the recovery room.  As I sat on a plastic chair where his bed would reside on the ward, with my mum for company I felt the sensation I had only felt once before.  One of complete and utter helplessness.  I had to entrust his life in those of the Doctors hands, just like when he had decided to enter this world eight weeks early.  There was absolutely nothing I could do but wait, and hope.

As time approached the three hour marker a nurse finally poked her head in to me.  I was expecting her to tell me that I would be taken along to the recovery room but instead she informed me that he was still in theatre as the operation was taking much longer than expected.  I was told he was doing well and they would keep me updated.

As the clock slowly proceeded on a further 60 minutes, I was again updated that although still in theatre they didn't expect things to take too much longer, but because he had been under anaesthetic for a long time he may take longer to wake up in recovery.  A painfully long four and a half hours after they started, I got the green flag that he was out of theatre.  I was asked to go straight along to recovery because unusually he had woken up very abruptly - just ten minutes after arriving - and was in extreme distress and very disorientated.

I was not prepared for what a sorry state he would be in.  As I walked in the door I had a sharp intake of breath.  Both of his legs were in hip to ankle plaster casts.  A pole was attached into the cast across his knees, so his legs looked like an 'A'.  Tubes and wires seemed to be coming out from everywhere with various bags of clear liquid hanging from the IV stand. 

 

The nurse got me straight to his bed asking me to let him hear my voice in the hope he would become less distressed.  It didn't seem to make any difference.  He should have still been coming out of the anaesthetic, it was like he was doing so but in a conscious state.  His cry was like nothing I had ever heard him emit before.  Pure pain.  Pure distress.  Pure horror for me as his Mother.

 

We were in the recovery room for almost two hours before his stats settled enough for us to be released back to the ward.  I had been informed, by a visit from the Doctor who had undertaken the surgery that things had been very bad.  He had performed the surgery to the muscle on the thigh (incision / scar one).  He had broken and reset the hip with a metal plate (incision / scar two) and unfortunately massive disintegration of the ball socket had taken place, much worse than anticipated.  Bone graphs had to be taken thus needing a further incision.  The Doctor told me that Bone graphs are extremely painful and this would cause J1 probably the most pain in the first few days.  Because of this the Pain Relief team had prescribed an anaesthetic drip to be delivered straight into his back for 24 hours.

 

By the time we reached the ward it was quite late in the afternoon.  J1 was still very upset (understandably).  I can't begin to imagine the pain and, more over, confusion he was in as I had not been able to explain to prepare him for what he was experiencing.  The same could be said for how I was feeling but that was not important at the time.  I knew it was going to be a long, slow recovery.  J1 could not really talk, he would not be able to tell me where it hurt or how he felt.  All he would have was tears and I would have to hope my Mothers intuition would know what to do to help him.

 

As shots of morphine were administered every 15 minutes, he would doze for about five minutes.  I prayed that in his drug induced sleep, at the very least, he would get some relief from the hell he was in.  In those few minutes of quiet my thoughts ran wild.  I wondered if being under anaesthetic for that length of time could have caused him more brain damage?  I wondered if the powerful drugs they were pumping into him would cause damage anywhere else, he was still so small?  I wondered how we would change his nappy without causing him excruciating pain?  I wondered how he would ever forgive me?  I wondered what I had ever done in our lives, that was so bad, that he deserved this?

 

I wondered those thoughts every time those quiet five minutes happened, for the duration we were in the hospital.  In a zombie, sleep deprived state, J1 and I suffered through what seemed like the longest days and nights I have ever known.  The make shift bed was never slept in.  Most nights I would pass out hunched over the bed stroking J1's hair because it seemed to be the only thing that calmed him.

 

Recovery had only just begun.  

Dear Boys - Letter of Life 2 (Family Friday)

Dear Boys

October / November 2011


These last few weeks have been very hectic and your normal, calm, perfect (I know, I joke) routine has been knocked out of kilter quite dramatically.


It all started when we were excitedly watching Aunty Marina on TV - Yes!  TV.  Aunty Marina was on best form when she was trying to win money for a fabulous charity called Bullies Out (and let's hope and pray that by the time you are grown up and reading this you will never have had to use them) on a game show called Holding Out For a Hero.  J1, my dear sweet boy, this made you happier than if Father Christmas had appeared himself at our door and we have watched it every day since it has been on!


However it was at this very moment that poor Daddy was very unwell and we had to take him to hospital.  Daddy had gone and got himself a strangulated hernia and had to have an operation on his belly and a stay in hospital.  This meant, J2, that you had to have frequent visits to Nanny and Granddad's (yes Nanny is much stricter than Mummy) which in turn made you extremely clingy (but still very cute) and J1, you got to stay at Nanny and Granddad's like a holiday visit, and you loved it.

Another exciting thing for your boys to have happened over the last few weeks is that we had our very first Halloween Party.  J1, you were 'Chair Charging Dracula' a great idea for you as the cape went right over your whole wheelchair and did not make you too hot (my little sweaty betty) and J2, I told everyone you were going as a little devil, for which I did have a costume, but then I found an even better one and we surprised everyone at the last minute...

Yes dear baby boy, to my unashamed pleasure I got photographs of you in this for the sole purpose that they will be gracing your 18th birthday board in 2028!

J1, what I am learning about you mostly at the moment is that you have so much character and are really quite cheeky, but all in a fabulously good way.  Your ability to drop a one liner and have us in stitches is becoming a common occurrence and for this my heart swells with pride, it is not something I thought would ever happen, let alone at age 7.  You amaze me everyday.  What I would really like you to try and learn for mummy now is to blow your nose into a hanky and not your hand as it really is gross.

J2, your development has me in wonderment, as every milestone you reach on 'normal' time is a great sense of relief and again achievement.  Your little mind is working overtime at the moment, and you are trying (and mostly succeeding) in saying new words everyday.  Your most used one at the moment (as it has just been Halloween) is 'Pooky' [spooky].  You are learning Twinkle Twinkle Little Star at nursery which is lovely, especially when you wake me up singing it in the morning and kissing my eyelids.  I am just not so keen on when my eyes don't immediately open you try and stick your fingers in them and force them apart, we need to work on that...

With J1's 8th birthday approaching fast (Sunday) we have lots of fun activities and eating to look forward too and then it will be full steam ahead for Christmas, which as you are both getting older is just getting better and better.

Until the next time my dear boys.

I <3 you.

Mummy.xxx