The Day Our World Turned Upside Down

On 5 January 2011, our world was turned upside down.

Life as we know it would never be the same.

Over the course of the next 12 days, we were to find out that our perfect little man was even more special then we already thought.

After months of being a bit "off coloured", it took an early childhood nurse 5 minutes to confirm my observations - that Sean was sick; not just plain sick, but very sick. Jonathan and I had notice a change in Sean since around mid October, after we returned from our holiday in New Zealand. Sean's appetite was slowly disappearing, and he was steadily losing weight. By mid December, Sean had changed from our happy, active, engaging and sociable little boy to a clingy, listless, easily irritated and sooky baby, who needed to be held 24/7.

Sean's rattly wet cough seemed to be getting worse, and no amount of medicated spray would abate Sean's runny nose. He was also waking every night with a coughing fit, and his skin was always patchy and didn't seem to improve, no matter what creams we use.

Sean became even fussier with his food, to the point where we would only feed him breakfast, because he was fighting the solids at every other time of the day. It would take 45 minutes to feed Sean a small amount of food, and often, if he got upset, he would bring it all back up again. The only thing he wanted was milk, and even then, it was struggle to get him to drink his formula 4 times a day. As a consequence, Sean's weight plummeted and his whole body became gaunt, to the point where his vertebra was painfully visible and his baby face was rapidly losing the baby roundness.

We took Sean to see doctors - our GP didn't think there was anything wrong, and our paediatrician prescribed medication to treat reflux, which he thought was the cause for Sean's loss of appetite. Another medical professional thought Sean had asthma, so our GP prescribed Ventolin. Thankfully, we didn't outlay the money for these expensive medications, because Sean didn't have either reflux nor asthma. As it turned out, we now need every penny we can save for much bigger things.

A chance meeting with Margot from Camellia Family Care Cottage at the shops just after Christmas led to her paying us a visit on 5 January at home. After chatting with us, Margot felt compelled to drop by to see how things were with Sean, and within 5 minutes of her home visit, she stated in no uncertain terms that there was something wrong with Sean.

I felt vindicated, exhilarated, and more than anything else, relieved that someone finally believed me. But the urgency in Margot's voice also made me fearful. At her insistence, we called our paediatrician, and Margot explained the signs and symptoms Sean was exhibiting - the shallow fast breathing, the listlessness, fatigue, elevated pulse. All this led to an urgent appointment to see our respiratory specialist Dr Hugh Allen later that afternoon.

Dr Allen examined Sean for a little while, and 10 minutes into the consultation, he declared we needed to go to Sydney Children's Hospital. Right away. Tonight. Do not pass Go. Do not collect $200. Dr Allen told us to go home and pack a few things, and to head straight to the SCH Emergency Department, and he called the ED Registrar to alert him of our impending arrival.

Jonathan and I looked at each other, and I think I blacked out a little after Dr Allen said "hospital". In a blur, we drove home, packed a bag, sent an email to everyone we'd invited to Sean's birthday party (scheduled for 8 January) to say it was postponed to a later date, got back in the car and headed as quickly as we could to SCH.

The ED doctors and nurses were great, but we were there for hours and hours waiting for blood test results to come through. Sean had an X-ray for his chest, and bloods were drawn and a cannula was inserted into Sean's left hand. Just before 1am, we were finally told to head to our room, and both Jonathan and I were allowed to stay the night, much to my relief.

Below is the email that we sent on the night of 6 January to Jonathan's mum, with a copy to other family members and worried friends who contacted us after receiving the "party is cancelled" email. This is the start of a new journey for us. One that we never expected to embark on, but one we will bravely face. Or at least face with as much bravado as we can muster.

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Hi Mum,

Looks like we're going be here for another week.

After being admitted last night at 7pm, we finally settled into our room at 1am, and it took another half hour before Sean fell asleep. Jonathan and I took turns sleeping in the bed, the other option being a very uncomfortable recliner that's well past its use by date. We woke at 8.30am, with Sean sleeping in till 9am.

Almost as soon as he woke, Sean was subjected to many visits from doctors and nurses who poked and prodded him all day long. On top of the cannula they put in to draw blood and the X-rays of his chest last night, today he's had more blood drawn, his snot sucked out of his nose for tests, swabs taken from a patch on his neck, his lymph nodes prodded and checked, his skin looked at by a dermatologist, an ultrasound on his belly, and his obs done every hour. Sean is now on a drip and is using oxygen to help keep his saturation levels up.

What we know so far is that his blood work looks normal with the exception of a high white cell count. This means he is most likely suffering from an infection of sorts. The snot test came back negative for some common viruses, and the chest X-ray shows some signs for concern. The ultrasound shows a slightly enlarged liver but nothing to really worry about just yet. We are still awaiting an echocardiogram which was suppose to happen today but didn't. The surgeon has decided to take a lymph node out of Sean's neck, so that means surgery on Monday. The earliest we can expect to go home, at this stage, is Wednesday next week.

Jonathan has now gone home for the night. He wants me to take turns with him to go home, but I don't want to leave Sean. We'll see about the rotation.

Jonathan is going to take some time off work, and I've let my work know the situation and have put back my return to work date by 2 weeks. We were going to have a party for Sean this Sunday, but that is now on hold.

I'm hoping and praying that Sean is OK and there is nothing wrong. I'm so scared and so is Jonathan, but he's trying to be brave for us.

We'll keep you posted on things as we know more. As tomorrow is a Saturday, not much is expected to be done over the weekend.

Sean's fast asleep now and Jonathan should be home by now. I'm going to make a move to bed. We'll keep you posted as we learn more. Love to Dad too.