Day +21: 4 Weeks Ago...

4 weeks ago, we entered the doors of Ward C2 West, nervous and anxious about the journey ahead. As we settled into the room that housed Bed 17, a million thoughts rushed through our heads, trying to reconcile with the reams of information we had been given by our medical team.

4 weeks ago, we were facing an unknown number of weeks in hospital. We were staring down the barrel of chemotherapy for Sean that would prepare his little body for the cord blood transplant. I was an emotional wreck, crying all the time, because I couldn't stop crying. Jonathan was the glue holding us together, but he too felt scared and lost.

4 weeks ago, the nurses hooked Sean up to all the machines and pumps needed to deliver medicines and other vital fluids to Sean. Sean would spend these 4 weeks tethered to a single pole, and later to a giant heavy pole that housed 7 pumps. It seemed like we would never leave hospital.

Today, Professor Marshall all but threw us out.

During rounds this morning, Professor Marshall told us again how well Sean was doing. Everything was tracking according to plan. The morphine was to be switched off today, meaning Sean could be completely disconnected from all the pumps during the day. Sean needed a blood transfusion today as his red cell count was low. With Sean eating fairly well, and tolerating the continuous tube feeds, we just needed to tweak a few things to make sure Sean was getting all the calories he needed per day. One solution was to feed Sean from 1pm to 5am. This meant Sean would be tethered to the feeding pump from 1pm to 5am, every day, for the foreseeable future.

No. No way. Not a chance. Never ever ever.

Simply not feasible.

How the hell was I suppose to look after a very active toddler, who was going to get free reign of the house once we get home, if he was hooked up to a pump from 1pm to 5am every day? I mean, sure, it would be fine when he was asleep from, say, 8pm to 5am, as Sean would be in his room, where we had the pump sitting on the change table, and a hook hanging from the top of the change table to hold the milk pouch. But from 1pm to 8pm, it was not possible for me to be running around after Sean holding the milk pouch and the feeding pump with the world's longest extension cord.

Luckily, Laura piped up and said we could shorten the continuous feed, and introduce boluses of milk to Sean at regular intervals during the day. I had never given Sean a bolus of milk before, so Laura arranged to have our day nurse Chrissy show us how to do it.

Professor Marshall kept talking, and the more he talked, the more it felt like he was throwing us. It all felt very rushed, and even though going home was something I desperately wanted to do, I wasn't quite ready yet.

For 4 weeks, help was only a call button away. Medications, nappies, everything was just a call button away. If the nurse assigned to us wasn't available, another nurse would come in and look after Sean. If the nurses needed a doctor's opinion on how to treat Sean, a doctor was always on hand. Sean was monitored frequently - his temperature, his blood pressure, his heart rate - if any of these became irregular, Sean would be treated straight away.

At home, we will be 45 minutes away from our medical team, and that is if the traffic is free flowing. There is no call bell, no nurses station, no never ending supply of nappies and coban and other supplies. At home, it's just me.

I wasn't ready to leave. I didn't want to leave. I needed a few more days to adjust to our new life.

After the team left the room, I had a mini meltdown. Chrissy was in our room, armed with Sean's medicines, and I broke down to her. I told her all my fears, and she was very sympathetic, and told us that although Professor Marshall's version was quite cut and dry, there was a good transition plan that had been devised for families going home post transplant. Much much much more about baby steps than one giant leap.

First step: get Sean disconnected from all the medications. Next step: take a trip out of the hospital for a few hours, during the day, and return for the night. Next step: leave the hospital and go home for one night. If all goes well, the final step: pack our bags and be formally discharged.

Today was the first step. The morphine stopped. The lasix stopped. And once the blood transfusion was over, that line was off too.

Chrissy turned off the feeding pump and disconnected that line too. And Sean was free. We were shown how to give Sean boluses of PediaSure - we connect a big syringe to Sean's NG tube, pour in the formula, hold it higher than Sean, and let gravity feed the milk into Sean's belly. The process looked easy enough, and both Jonathan and I took a turn in giving Sean these supplementary feeds.

This happened late in the afternoon, so as much as everyone else was telling us to leave the hospital, it wasn't to be, so we let Sean run loose in the room. He loved it. Round and round, up and down the couch, he had so much fun. In fact, he had so much fun he didn't want to be back in the cot. Our little 15 month old son could throw a tantrum to shame all 2 year olds in the world!

My parents came by to visit us, having returned from their overseas trip. They were very pleased to see Sean so well, and up and about and bouncing in his cot. We told them the news about our impending discharge, and they were thrilled for us. Tomorrow, we are going to head to my parents' place for our trip out of the hospital. Not only do we get to go on a field trip, but my folks won't have to drive out to us.

I am feeling more comfortable about going home. I am also looking forward to going to Dad and Mum's place tomorrow. The end of our hospital stay is nigh!