It's a matter of perspective

I remember having a pity party for myself because my child needed spine surgery at just 14.  Feeling so injured that all this anguish had been visited upon us.  Hadn't we had enough misfortune yet?  How much more were we expected to take?

On the evening of "the longest day" I passed another harassed mother in the passage - not sure which of us looked more stressed.  We had a very brief conversation along the lines of: "What surgery did your child have?" I asked.  "Major surgery on his leg, and yours?" she enquired.  "My daughter had major spine surgery!" I replied and made my way back to Megan with a sympathetic smile and a wave.  At the time I remember ignorantly thinking, "Just his leg - she has nothing to worry about."

It is with both shame and humility that I think of that moment now.  A few days later Anna and I got a chance to talk.  Her son Liam had a part of his leg "replaced" with a donor leg, as if that is not bad enough the reason for this surgery was not some stupid stunt on a skateboard or bike, no... Liam had a cancer, a malignant bone tumour in his knee, he had already had 3 months of chemotherapy in preparation for this surgery.  Liam is only 13.  He and Anna, his mother, have been at Starship Hospital for over 3 months and would be moving back into the oncology ward once he is well enough.  There they will nuke him again to make sure that there are no cancer cells left to mount a fresh attack on his young life.

Anna is the strongest person I have ever met.  She did not wallow in pity or bitterness but rather told me stories of children they had met in oncology who could not be cured.  She felt, as I do, that they were luckier than some.  Her son had not lost his leg to cancer and would not lose his life either.  There are so many other children who are not as fortunate and I salute them and their families.  This character building crap that we as humans endure is really not for the feint-hearted.


Another child was there for over 3 weeks as she had to have her half her pelvis reconstructed - also because of a tumour.  They (Mum, baby sister and Dad) had to stay at the Ronald MacDonald house because they were from Tauranga (where there is no children's hospital) which is a few hours away from Auckland.  The mother had to stay with their baby at night as she was still breastfeeding and so Dad was on night duty.  He was always working on his laptop - trying to get his work done while his 11 year old daughter slept.  I never saw her and while we shared a couple of coffees and smiles in the passages, I never learned any of their names.

Next door was another child, 12 year old Hannah who also had scoliosis (her curve was worst in her neck and progressing fast).  Hannah was put into a halo that was attached to weights (to straighten her out for 3 weeks) before the surgery so that the surgeons would be able to get the best possible outcome for her.  A halo is a scary thing to see on an adult, on a child it is terrifying!

Staying in Starship for that week was a very humbling experience.  I met people who were going though stuff that was even bigger than Megan's major spine surgery, some were fighting for their lives.

You see the world with fresh eyes when you consider how much worse things could have been.  I can honestly say that I even began to feel grateful that scoliosis was our only problem.  We were lucky. Lucky that Megan's spine could be straightened, lucky that there was nothing more sinister afoot.

Now, two and a bit months later, Megan is doing so well that you wouldn't even know what she has been through.  Well, not unless you see the red line that divides her back.  She is my amazing daughter who has fought a battle (that most adults don't even need to consider) and has won!  She will go from strength to strength and within a year she will be back to normal. 

Megan being completely back to normal is my my fondest wish.  Nothing will make me prouder than the day she can play netball again or scale a wall or simply do whatever else she wishes to do. Then I will know that we did the right thing.

Alive and well...

Sweet jubilation, we walk into the recovery room only to find our baby - so out of it that she's still not entirely able to open her eyes.  She was under for about 8 hours and has tubes and wires everywhere.  The room is bright and there is a flurry of activity but I am only aware of one little body, in one big bed, looking tiny and vulnerable.  Mine.

This time, remarkably, I am able to stem the tears and find that inner strength that I was certain had been eradicated from my being; (welcome back Mrs Sensible!) Within minutes we are rolling her along to her new room in the ward.  On arrival she is swarmed by buzzing nurses and we are forced to step back and let them buzz.

Time again becomes fluid and is no longer relevant to my returning sanity.  Meg is awake and talking.  Boy oh boy, is she talking!  Her first request, "can I have my iPod?" sends me into fits of laughter (perhaps not all that funny - more response of relief that she is still the same kid, a Gen Z who cannot function without technology at her fingertips). With stoic interest she asks me if she looks taller, "Meg, you're lying down, I can't really tell..." I explain with a smile.  "Well, why don't you measure me then!" she suggests, really put out that I did not think of this obvious solution.

She wants photos of everything that she can't see, from her back to her neck, to anywhere that has a pipe, tube or wire.  At this point my darling daughter looks at the nurse and asks, "what are all these pipes and wires, what is going on?".  The nurse, professional in every way, begins a long explanation of each object, describing what it is and what it is for.  This detailed explanation takes a minute or three and Megan maintains eye contact the whole time.  Once the nurse stops talking she replies, "Thank you but I don't really need to know all of that!" and promptly falls asleep. This naturally once again sends us all into hysterical fits of laughter.

It's dark now, she wants to phone her friends and family, so we let her; she wants water, the nurse suggests ice blocks (ice-lollies for the South Africans) - she has four lemonade ice blocks before she is satisfied.  

She wants and so... she gets.  She is queen of all she surveys.  At about nine that night, it's just the two of us, she has been in and out, awake and asleep.  I am once more stable, lucid and calm.  Her eyes open, Megan looks at me and says, "Mum, I can't believe that I am having surgery today - I really should not be drinking!"  Clearly the morphine is keeping her happy...

It's 2am and Megan is crying, not because she is in pain but rather because I am being so mean!  I won't let her phone her friends and I won't let her phone her Dad, but most of all, I won't let her phone anyone!  She does not believe me that it's 2am.  I am lying when I explain that she called them all hours ago because she would remember that!  To appease my little savage I go and get her another ice block and now she also cracks the nod for some fruit juice.  Distraction is key to getting through this night, sleep - not so much!

Night blurs into day, with nurses in and out checking her every half hour, there has not been much sleep.  That was the longest day.

Day 1 post op:

Today, Meg got up and sat in a chair.  Can you imagine, on day 1 being expected to get out of bed?  Well she did it - then slept the rest of the day away in a haze of pain and morphine.  She woke for visits from her beloved family and that was about it.  I am really craving a bit of sleep but that is not going to happen for a while.  Oh well, things less important will just have to keep.

Day 2 post op: 

Meg has developed an allergy to the antibiotic and so all drains, drips and epidural were removed today. She is in a great deal of pain but they are keeping her comfortable with morphine. She has taken a walk around the ward but after that was very tired and slept a lot.  We watched Mirror Mirror at about 11pm but I am sure Meg won't even remember it!  She faded in and out the whole movie but would not let me switch it off.

Day 3 post op:
Megan  is doing really well - had a pretty good night and so far has had 2 big walks around the ward.  Her back is very sore so still quite doped out on morphine but she is resting comfortably. Probably will be able to go home on Monday - then friends can visit :) Allergy is still bad, now they think it may be the Morphine...maybe.  We bought Meg and her neighbour Liam MacDonalds to entice them to eat.  Sleeping at home tonight as I can no longer function, Haydn will do the Hospital Shift.

Day 4 post op: 

Slept a blissful 6 hours and came back to Starship this morning with more food and a smile. Her pain levels are still pretty high and she is frustrated because she has to wait for the nurse to bring medication now, instead of just pushing a button and getting an instant dose.  She is walking remarkably well.  I am so proud. 

Day 5 post op: 

Meg had a bad "trip" last night with a Morphine build up, had nightmares, twitching and hallucinations so they are trying new pain medication - will have to stay another day to make sure all okay. Slept about 2 hours - feeling wrecked!

Day 6 post op:

Well we are home now... 6 days at Starship Hospital - finally over, had my first full night back in my own bed - bliss. Now if I can just catch up on some sleep, I'll be rocking. Started working from home today - lucky me.  Meg is still doing very well but this is going to take some time...

I have so much more to say but now we are almost 2 months post op and Megan is great.  She is back at school part-time and rocking the Mall with her friends.  It is a long road and she still has a way to go but it is all good.

Thanks to everyone for your support and encouragement.

Trace

Part Two of the Roller-coaster...

Okay, so grab a glass of wine, water or whatever; settle in and let me purge my demons...

The longest day of my life...

Have you ever felt each second of every hour sawing through your raw emotions with no reprieve or release for the mounting tension that consumes you?  This is how I felt for roughly 8 hours, I didn't count them, my brain function was reduced to breathing and wiping my eyes.

We were sent up to the Ronald MacDonald family lounge* for the day.  The room is too bright and too open.  I want to huddle in a dark padded room and rock or maybe bang my head against a padded wall until they call me to say the surgery is finally over.   I want to go down to surgery and wait outside the door.  I want to rewind the last 3 years and keep her spine form curving.  Nobody cares what I want.

Like robots, we go through the motions of making coffee and sitting down.  The second I think, I hurt.  I ache with tension; my eyes burn and my throat feels inflamed and swollen.  Haydn sits beside me, his arm wrapped around me - holding me together and the tears flow again.  I can't verbalise my feelings I am too raw and broken.  Hours pass but I remain in my vacuum, inconsolable and lost.  I feel like such a baby but I can't make myself behave how I thought I would.  I am not strong, I am weak and scared and... crying again!

Oh God!  I thought You would never give me something I could not handle.  I. Can't. Handle. This!  Please God, just make it stop! This is where the bargaining began - in my head I was offering God my last breath if she would just be okay.  I was trading my life, my soul - my everything - just so she would be okay. Just let this day be over.

But, when I looked at the time it was only 9am.

I could wring every tear from your eyes, I could drag out this torture - for hours - as it was dragged from me but I will fast forward.  By about 11am I was so exhausted that I could not keep my red, swollen eyes open.  The reception lady offered me a pillow and I tried to lie down on one of the couches.  They were uncomfortable: just too short with arm rests that were too square, too hard and too high.  I lay there for some time just staring at nothingness, battling my emotions and waiting, just waiting.  Haydn was in his own hell and I could not offer him any support because I was a wrung out wet, limp rag of uselessness.

In the afternoon we went for a walk outside, trying to make the stubborn clock tick faster, it didn't work.  We then went to the ward, Megan's stuff was in the nurses office as they were moving her to a high care private room from surgery.  One good thing... no more Sponge Bob.  We collected her things and sat in her new room, Room 8.  It felt so empty, no bed, just two chairs to visit with a patient that was clearly not there. 
The beast within screamed in anguish and the tears continued to flow.  What the hell - how can I still have any moisture in my body for tears?  We waited and waited and waited some more.

Eventually Dr. Ferguson walked past our room, I immediately set out after him and he dutifully turned back to tell us that the surgery had gone very well but that she was still in recovery.  We would be called when she was awake. Half the world tumbled off my shoulders at his words as relief flooded within, like warm honey.

Some more time passed and we went to the nurses station to ask if we could go down to recovery and wait there (this is what we had been told would happen).  "No, I'm sorry..." was the reply, "they have not called us yet, she may take some time to wake up."

So we waited some more... time still dragging itself around the clock without any consideration for my lack of patience.  The anxiety began to build again with each tick, tock on the clock.  Why was she taking so long to wake up?  Why cant we just sit there with her?  I want to see my baby!  Another hour passed before we finally were told we could accompany the nurse to fetch Megan and bring her back to the Ward.  At that moment I wished I had the power to teleport, instead we followed the nurse to the elevator and walked at a unreasonably normal pace.

Footnote:

*In retrospect I can say: the Ronald MacDonald family lounge is amazing!

It is a tastefully decorated lounge that can accommodate many people - maybe about 80 or so?  There is a reception desk where you sign in with your child's name and Ward.  Comfortable looking sofas, set in small groups or clusters with little coffee tables between them.  A bookcase (holding reading for young and old) is filled to capacity and there is a children's corner that has toys and block and things to keep little sibling entertained.  There are magazines all over.  The kitchen area has a large fridge, stove and counter, there is also an island counter that is stacked with fruit, and various meals and snacks.  The outer wall is floor to ceiling glass windows that overlook Auckland City making the room bright and light.  There are coffee and tea making facilities and the staff prepare meals and snacks the whole day, until 5pm.  The most incredible aspect... there is no charge and no limit to how often you visit or how much you consume.  This is all based on donations from MacDonald's and the kindness of the staff who service the facility.  So, next time you pass that box on the counter at Mac D's, pop a coin or two in the box!

The Roller-coaster...

11/10/2012: Time has slipped away, taking without asking and yet still somehow drawing things out like pus from a wound.

Let me begin with a very brief recap of the last month...

Tina from Starship Spine Service rang to discuss Megan's first appointment scheduled for about the first week in November.  In our conversation I mentioned how eager Megan was to have the whole thing over and done with.  On the 18th September 2012, I received a phone call from Tina again, she said that while a bit out of the ordinary, a child that was booked for surgery next week was unwell.  The usual process for them to follow is to then begin with the most severe case and ring patients to find out whether they wanted to take this earlier and now available spot.  Our conversation was still fresh in her mind and so she rang me.  "Would you like to take the surgery spot on Wednesday, next week - the 26th September?" said Tina.

After discussion with Meg and Haydn we decided that we would go ahead.  Gulp!

(You know the initial jerk you feel as the roller-coaster begins to move?)

Friday 21st September (Megan's 14th Birthday) we headed off to Starship Spine Service for our pre-op consultation.  First Stop, x-ray... we were there for about 45 minutes and then went to the day clinic rooms where we waited over an hour to be see by the Doctors.  Matthew is young, but professional he is a surgery resident and examines Megan prior to her being seen by Doctor/Mister Ferguson.  During his examination he thinks he feels a lump behind Megan's knee.  Since we are here anyway, he decides to get the knee x-rayed too, so back down we go... another 30 minutes pass and we return to the day clinic rooms and wait another 20 minutes, tick, tick, tick...

(The climb up to the precipice of the track is slow and tedious, clickety, clack)

Finally we are called back into a consulting room where Matthew assures us that there was nothing on the knee x-ray and hands us over to Dr Ferguson.  He briefly discusses the surgery and introduces his little team of students that hang on every word like gospel.  I feel my stomach tighten as they explain how they will straighten her spine.  All too quickly for me to process, the surgical team are gone and the anaesthetist arrives to explain his bit.  He puts us at ease with his professionalism and kindness, he does not talk down to Megan and explains to her all the needles and tubes that she will be subjected to, he does not miss anything but delivers the information in such a way that we are confident in his ability.  He is also the head of the pain team who will see and treat her after surgery, we all agree that he is very nice.

(The first dip is so quick that before you realise you are afraid, you are going up again and taking a deep breath to reassure yourself, that was not so bad!)

It is at this point that the team realise that today is in fact Megan's birthday and so they insist that the rest can be done next Tuesday when she is admitted and that we should go and enjoy what is left of our day.   It is 16h30 we have been there since 12pm.  What a fun 14th Meg is having so far... The weekend passes in a blur of birthday activity and shopping for hospital attire, etc.  Before we realise it is is Tuesday and Megan is to be admitted at 2pm to Starship hospital.

(A couple of twists and turns, ups and downs and one loop de loop, yeah we can do this!)

Ward 24 A, Orthopaedics
Room 11 is a 4 bed ward, there is a chubby boy, same age as Meg across from her, he has a drip in his hand but all in all looks well enough.  Beside him is a younger boy - Jack who has a broken arm - so far he has had 2 surgeries to fix the damage that a fall out of a tree will do.  He is 7 and full of beans - seems quite happy and perhaps a little bored.  The bed beside us is enclosed with curtains - no sounds emerge...

Megan feels silly being forced to sit in a bed when she feel fine, soon enough things begin to happen.  The nurses take some personal info and then put some special creams on both her arms to numb them as she will need bloods drawn.  Meg is afraid - her aunt and father have managed to convince her that needles are the most terrifying thing on this green earth.

When the bloodsucker arrives I tell Meg not to look, she pops in her earphones and listens to music on her iPod looking out the window, her face is scrunched with fear.  She looks at me nervously and asks if it has started yet, I smile and say, "No, not yet, keep looking this way".  A moment later the blood has been taken and the needle is out.  I tell Meg and she turns her head - disbelief evident - she felt nothing at all, "Wow, Dad and Neen are real wussies!" she laughs.  My brave girl.

The day passes in a haze of Sponge Bob and other awful shows blaring from the TV mounted on the wall.  I feel as though my head will implode, just to relieve the frustration, how I hate Nic TV.  I am aware that this is an unexpected reaction, I can still, very clearly, remember a time when I thought I would always love cartoons.  That was before Sponge Bob and other such crap!  Bring back the Gummi Bears and I'll watch, okay? Parents are invited to room in with their children and so I get to "sleep" on a plastic covered sponge mattress on the floor beside her bed that night.  Sleep is as elusive as the Yeti, I read until about 3am and finally succumb to slumber.

(Jerk, we are approaching another really steep incline.  I am afraid!)

It's 6:30 am and the ward is bustling.  Megan is given a special bar of soap and told to go an shower, making certain to wash her back with the antiseptic bar.  I am not invited.  My stomach churns with dread, it is today.  Haydn arrives and at 8am we are wheeled down to the pre-op room where Megan is already buzzing from the pre-med that she swallowed down at 7:45, the lure is put into her hand with almost no fuss, she is a happy little cloud.

My heart is thumping in my chest, my hands are cold and I taste bile at the back of my throat, it is hard to swallow past the lump in my throat, my eyes ache with unshed tears.  I know that I am not going to be able to hold it together much longer.  Tears roll as I give her a hug and say, "see you later".  Haydn and I have already discussed this and he will go into theatre with her, he is my mighty oak.

As the bed carrying my precious baby is wheeled away my strength and courage are purged like they never were.  I go back into our little room and the floodgates burst!  I have the unnatural feeling of a mother bear who has not only let them take her cub but also knows that she is in harms way - even if it is to heal and not to harm.  The primal scream in my broken and fearful heart is anguish like I have never known and never want to know again - not ever!  It is 08:37am on Wednesday the 26th of September, this is the start of my longest and hardest day.

(The roller-coaster is on a downward spiral that feels like it will never end!  I wish I could stop this thing!) 

To be continued..

The passage of time...

I am really frustrated with how variable time seems to have become over the last few weeks.  At work each minute ticks by slowly, like a sluggish snail dragging it's shell.  Then the weekend begins and I blink, just once, and it is Monday again!  Curse you perception, curse you!

Megan has been referred to Starship Spine Service and we are waiting for our appointment so that this can progress again.  We are really hoping that she will be able to have the surgery before Christmas so that we can be with her at home while she recovers.

Jenna has put in an application to the performing arts class and we are optimistic that she will get in.  She really is a mini me, a little drama queen that can dance!  Antithetically, she does really well in Maths.

My writing course is almost complete and I am feeling really pleased with my progress and with what I have learnt.  I fear that I will always have a few grammar gremlins chomping at my words like ants at a picnic.  I am still uncertain as to where my writing is going to go and how but perhaps I just need a break.

Spring arrived a few weeks ago and flirted mercilessly with us.  She flashed her sunny smile and made us think she was here to stay.  Sadly on the weekend Winter slammed her foot down and showed us all who is boss.  The old wet and windy hag will not let go her grip and Spring is just going to have to wait in the wings for Winter to get bored with us.  I really hope this happens soon because we didn't really have a Summer to speak of last year.

Straighten things out...

We saw the specialist yesterday and the prognosis is not great.  It seems as though surgery is imminent and since our health insurance does not cover it we will just have to go through the NZ public health system.  Thankfully, this is not awful news - the level of care in NZ is very high.

Her curves are both over 45 degrees and the concern is that with another growth spurt imminent the curve will continue and reach 60 degrees, if that happens then it will continue to curve for the rest of her life and end up incapacitating her.  Scoliosis is much harder to correct beyond the "growing years" and so treatment is recommended before age 15.

The next step is a full spine MRI which will take about an hour and a half, next week Thursday.  They will be investigating the possibility of Arnold Chiari Malformation (unlikely), syringomyelia (unlikely) or tethered cord (I am hopeful, but unlikely).

Once this has been established then we will need to decide when, rather than if, Megan will have the surgery to straighten her spine.  The implication of not having the surgery is that the curve will continue and she will (and I quote) "not get a date to the ball".  She will also "grow" 7cm on the operating table when they "straighten things out".

Megan is dealing with all this incredibly well and she is keen to "get it all over and done with".  

We will get a second opinion before we consent to surgery and so I am looking for an alternative specialist to make comment on her condition. 

I will keep you all updated as things progress.

For more information, you can have a look at : http://www.wheelessonline.com/ortho/idiopathic_scoliosis

http://www.wheelessonline.com/ortho/scoliosis_in_juveniles

http://www.iscoliosis.com/

http://www.srs.org/

 

Writing from the heart...

My latest writing assignment ended up being based on a real story.  The assignment was "Pick a day that didn’t end that way you wanted it to and rewrite the ending".

Megan had x-rays 3 weeks ago and we are seeing the specialist on 8th August 2012.

Body and Soul

The shock of seeing the x-ray crashes over me like a tsunami. I drag air into my lungs doing my best to mask the panic that is rapidly swelling within.   My heart thumps its way right into my throat and my eyes burn with unshed tears. I swallow down the barbed urchin that has invaded my throat.  “Dear God, no…”  

Inside, my inner goddess is annihilated.  Her limbs flail, thrashing in the darkness.  Consumed with agony and terror, she is rips out clumps of hair while bleating out animalistic cry of devastation. 

Hidden within my stricken mind rage surges and desperation mounts, “No, no, no!  This cannot be my daughter’s spine?  This cannot be!  There must be some mistake.  Please!” 

My soul tries to claw her way out of my chest and decimate the radiology rooms.  She is a fierce warrior that lies within.   We are both fully prepared to fight, but reason overcomes resentment.  Impotent, her arms fall to her sides as she crumples to the floor, a convulsing blob of misery. 

I take a deep, shuddering breath that stutters in and out like a scratched CD.  Replacing my grief wracked face with a mask of serenity; I calmly walk back into the room.  Megan’s eyes meet mine with a curiosity that begs for explanation.  For a second the mask slips but I quickly force it back and aim for a reassuring smile. Uncertainty flickers across her face but she remains pliant as the radiographer moves her into the next position.  I step back outside.

In the flick of a switch, my goddess has struck a bargain, we shall not accept this.  Her knowledge passes to me is a single breath and I understand.  “No, we shall not,” I agree and the surreal quality of my world expands.  “I have the power to undo this, to change what is?” I ask with wonder. My goddess nods sadly, the price is high.  There is no need for consideration.  The deal is struck - the terms are readily accepted and agreed to.

Body and soul collide as my metaphysical world interweaves with reality. With determined resolve I focus on the deformed s-bend that is my daughter’s spine.  With immovable concentration, I stare until my eyes burn, until I find the tremble.  The world flickers and time distorts. 

With every ounce of inner strength, I focus. Pressure builds and my head threatens to implode; but I will not stop now.  The thumping in my ears is like a jackhammer that has found my eardrums and had babies.  For each degree that the spine on the screen straightens, I feel the pop, rip and tear.  Bit by bit her curves are bartered for my own straighter alignment.  My body screams in agony, but I make no sound, “I don’t care, I can take it.  For my child I will take anything!”

The world wobbles once more and the warp shreds like gladwrap that has pulled too tight.  Energy surges from me with the force of a tidal wave and I collapse into a nearby chair.  Slowly the room comes back into focus. 

The tick of the clock replaces the void of silence.  With trembling hands I wipe my face.  Meekly, I lift my eyes back up to the image on the screen.  It is done.