Life in PICU was hard.
We had no diagnosis for Elijah, all we knew for sure was that he had a serious heart condition. Consultants felt strongly that there was a serious underlying condition that had caused his heart to become damaged. And whilst, I completely respect the job that they do, it is extremely hard to hear, “well…that could be due to his underlying condition.” It felt like that was the answer to everything….when he didn’t cry enough, when he cried too much, when he had loose stools, when he was constipated….
Throughout all of this, from 19th June we were determined to fight for our son, as any parent would be. I don’t think we were ever naïve nor in denial, but we did believe there was ALWAYS, ALWAYS hope. It really did grind my gears, that phrase: “his possible underlying condition.” In my heart and head I was screaming, “I KNOW! BUT WE DO NOT KNOW THAT HE HAS THAT!!!!” My biggest fear was that we would give up on Elijah, that we would lose hope, that we would ‘shelve’ him because of something they thought that he might have. And by jove did I fight that. And his cardiologist did too and we are so glad that he did.
Throughout those 3 weeks there were several times, when we were told Elijah wasn’t going to make it – at one point it was suggested that his brain stem wasn’t working and he could no longer regulate his body temperature, nor his blood pressure and was forgetting to breathe. That day, was THE WORST. I was there on my own – Ben had taken the other 3 to school and was coming to join us (Elijah and I) as soon as he could. The consultant just came to the side of the bed and told me the devastating news. He asked how soon Ben could be here…..I just couldn’t believe it….how had this happened. How had we got to this place?! I rang Ben to see how long he would be.
The physical pain at that moment. I thought I was having a heart attack. I cannot lose my baby. I couldn’t breathe. My body shook, I couldn’t stop the shaking. I remember praying, O Lord, give me the strength I need. Before Ben came, I remember leaning over and whispering to Elijah, “If you’re tired wee man, if you’re finished here, it’s ok.” Never did I think I would be saying such words. But strangely, there was that peace that passes all understanding. My body was physically crashing, my heart shattered, my brain a mess…but there was still a peace.
That day…9th September….just spiralled out of control. Difficult, difficult decisions were made and as we prepared to say goodbye to our darling wee man. A miracle happened. God stepped in. He sent our cardiologist to us, and through him, God said, ‘we’re not there yet’.
Elijah fought so hard, with God was on His side. As he came off medication, and as results came back clear, it transpired that there was nothing wrong with his brain stem, Elijah was just a little more sensitive to sedation than perhaps other little ones might be. It was a lesson to us all – when God is involved a+b doesn’t always = c. Gosh, don’t we all need to think outside the box sometimes? Every single one of us is unique. We are all our own person.
The nurses were so kind to us. They were so gentle, so caring. I watched them in awe as they dealt with horrendously difficult situations, as they cared so delicately for little ones so desperately ill. They remained so calm. They always had a warm smile, a hand of comfort, a listening ear. Nothing was ever too much to ask. They cared. They appreciated that our wee man liked to hold someone’s hand as he went to sleep, that he should always be able to feel duck up at his cheek. They came to know that his right side was his favourite and that if he was a bit unsettled he just needed to hold onto something for a bit of reassurance.
The doctors and consultants have such difficult jobs. As they make such critical decisions under such pressures of time, pressures of parents eyes watching their every more, questioning every remark. I admire their strength in being able to tell parents that their child may not make it to the end of the day, or share devastating test results. Whilst, such things are hard to hear. Parents DO need to know. We do need to be prepared. But…..
we, parents, we do need them to remember…that in the busiest of their days, in the urgency of reaching a diagnosis, we are still human. That little baby lying there, is a part of me. He’s my baby. And I will not give up, despite what tests may or may not say, I will fight for him, until he tells us ‘it’s time to go home.’
And we did. We fought on. The cardiologists, us, the church, our friends and indeed strangers,(yet brothers and sisters in Christ), we fought on. That medical team worked hard.
Elijah surprised everyone. If I’m honest, me included. There were 2 more days, 1 per week actually, when we were preparing to say goodbye.
But Elijah still had a purpose to fulfil. He wasn’t done yet.
As he came off the ventilator he was the best he’d ever been!! He was full of smiles, and from that day on he became such a chatty little boy. The nurses in PICU loved him – he got spoilt with cuddles and play time! Elijah LOVED the disco lights, (pretty sure they’re not called disco lights!!) the play specialists did little hand and footprints in clay with him. He let them know when he was less than impressed with their poking and prodding – he never did understand why the purpose of ‘obs’!!!
On 19th September Elijah left PICU and we went back to Clark Clinic. As difficult as PICU had been, looking back on it, over the next couple of weeks, we could see that it had all happened for a reason. Reasons that went even beyond the health of little Elijah. Everyone was changed….dare I say it, I think even The Royal Children’s Hospital!!
Decisions were made, we learnt more about his condition from testing that was done during his time on that ward, consultants learnt more about Elijah and how his little body worked….and we learnt….he really did NOTHING by the book. We learnt to expect the unexpected.
God was in every single bit of those 3 weeks. At times, it felt like He wasn’t. But He was. At times, we did not know what to pray. At times, we could not pray. But others prayed for us. God knew what we needed. God knew what Elijah needed. When I dared to think God did not know what He was doing and that I instead knew a better way. God graciously stepped in, “my child, I know best”. There were moments, when I despaired that God had abandoned us. But, each time, God had already something planned that would turn the situation around.
My life was changed thanks to our time on PICU. As a family we were stronger. My faith went to a whole new place. My outlook on life transformed. It’s a cliché I know. But we really did learn to live every day as if it is your last…..
Now, did someone mention the zoo?? A swimming pool??