(Dexter had seven surgeries in his first three years.)
We are scared and anxious, because we know how hard it will be be. We know what can go wrong.
Last time, we watched as crash carts were raced to Dexter's bed. We watched as they fought to keep Dexter alive. They were close to stopping, but Dexter stayed with us.
Here's the post we wrote on October the 21st, 2014.
Four years later and we are having to do it all again, but one both legs, this time.
Two weeks ago, we split our little family up, with four of us driving to Sydney and one staying behind. We were headed back to hospital, for more surgery.
We don't take Dexter's sisters to the hospital, while Dexter is there.
They visit, but don't stay.
Andrew and I feel incredible guilt, at leaving the girls.
Their life isn't easy. They are often forced to wait, as we tend to Dexter's needs.
The girls know he needs more time and assistance, and for the most part, they wait patiently.
When Dexter is not with them, they worry.
(At the time of the surgery, the oldest sister was not yet two.)
Had the surgery been postponed, Dexter would have been in his brace over summer... we would have lost another summer of swimming. We've lost the last two summers; Dexter had his central line in (for his chemotherapy treatments) and the following year, he had the purple leg plaster on, after his hip adduction surgery. The thought of losing another summer of swimming, was heartbreaking.
Dexter loves the water and it is wonderful physiotherapy for him.
When Dexter undergoes any form of surgery, it is stressful.
There have been too many bad times associated with surgery, and the recovery - times when we have seen his little body limp and pale and being brought back to life by a handful of medical staff. That's not something anyone should see.
I've blown in Dexter's mouth, and I've rubbed his chest. The nurses have shown me, over time, what to do.
So we were surprised when Dexter was allowed back on the ward, following this procedure. Normally, Dexter would be sent to the Intensive Care Unit.
Twenty four hours later, it was a different story. Things turned bad.
Dexter had had a bad first night, he had experienced a lot of pain and they didn't know how to effectively handle this. Normally, children receive an alternate pain relief, to help with the bad pain, but Dexter stops breathing when he receives this, so that wasn't an option for him.
He was given the maximum amount of morphine and ketamine to help counter the pain.
Unfortunately, this almost lead to an overdose.
A code blue was called.
A crash cart was pushed to his bed.
The ICU team were summoned.
Dexter's little body was floppy. He was cold.
Not for the first time, we thought we had lost him.
We stood together, and watched... and waited. Helpless.
If it had not of been for his very determined nurse, the outcome may have been very different and for her, and the team, we are incredibly grateful.
If it wasn't for them, we might not have Dexter with us today.
When we should have been celebrating being a family of five, we were pulled apart and spent these nights, split, under three different roofs. Our family was broken.
We were frustrated. We were cranky. We were confused.
We were physically and mentally beyond exhausted.
We cried. We felt helpless.
We didn't sleep.
All we wanted to do was to make Dexter better and we couldn't do this.
We couldn't explain to him what was happening.
We couldn't explain to him why it was happening.
We couldn't even pick him up and hug him.
We felt defeated.
Again.
We heard his gut-wrenching sobs and wiped the tears from his eyes. We held his hands and kissed him. We cried with him.
He is getting stronger, his pain is becoming manageable and we are much more confident in handling him. We have to be careful, each time we move him. Carrying him is difficult, but it's amazing how quickly you learn to adapt.
We see his muscle tone deteriorating. We see him struggling to hold his head up and we watch as his torso strength diminishes and he can no longer sit without falling to the side. We know he will have no muscle tone in his legs.
We've been told he will be set back at least 18 months in his physical development. And that, that breaks our hearts!
We've tried so hard, to get where we are... for it to be all taken away.
We struggle to make him eat, but the energy this takes makes meal times a slow, frustrating and often, frightening experience. We know, if Dexter does not eat, he will end up, permanently, on a gastro feeding tube... the feeding tube that goes down into his stomach. If that happens, he will never be able to pull it out...
He will be stuck with it, and will no longer be able to enjoy ice-cream or a biscuit.
We hear Dexter, when he sobs and cries and cries. He doesn't have the words to tell us the pain is worsening, so he has to wait until it brings him to tears.
Hearing Dexter cry... that breaks our hearts.
We can't even cuddle him... the brace is in the way.
People ask how we get through these things.
We have no choice.
It's hard; heartbreakingly hard and beyond difficult.
So, we look at Dexter, look at his strength and determination. Look at his inability to give up. That's how we get through.
And, we're lucky, because we have each other.
Andrew and I have always been able to share our worst fears, and our worries.
We comfort each other, and against all odds, have become stronger, as a couple.
And, we have our kids, our gorgeous three kids.
That's how we get by.
To read more about this, here's the link: We Nearly Lost Him
Family of Five
My Sister Knows I have Cerebral Palsy
Dexter's Days
Today, I Just Want To Be A Mum
Brain Damage Doesn't Mean I'm Not Clever
Brain Damage – Finding Out
My Birth
See the Cancer?
Little Fingers Reaching
Something to Say But No Words to Say It
And Then, They Whispered about Me
Dexter’s Femoral Osteotomy
When Your Heart Aches with Sadness
Dexter's Cancer
Dexter's Vision
Dexter's Cerebral Palsy
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