Archie’s Great Adventure

Archie's Great Adventure

When you spend every single day for just over 5 months at the hospital, with every single day being virtually the same, you begin to believe this is how life will be forever. I would ask myself every day, will Archie get any better? Can we do anything differently for him? Will we ever get him out of here? The story of Archie is one we will never forget.

When we found out that Archie wouldn’t be coming home, that this disease was beginning to win the fight, we thought Archie’s last days would be spent as every other day for the prior 5 an a bit months. I can’t describe how sad that made me feel… To be surrounded by medical staff, in a room that was so sterile, monitors, alarms and equipment beeping. Other families just outside. How is that a way to spend Archie’s final days. How is that fair?

Archie had fought so hard, every single day of his life. I didn’t want for him to never experience the things that most people take for granted.

The question that changed our lives

Then, Karen from the Palliative Care Team asked us one question…

If there is one thing you want to do for Archie, what would it be?

When we responded with something we thought was impossible like wanting to bring Archie home, even for a few hours, Karen looked at us and said they will do their best to make it happen. She then asked, is there anywhere else you’d like to take Archie? Of course, our initial thought was the Botanical Gardens. We walked the gardens every day for nearly 100 days going to and from NICU at the Mater Mothers prior to moving to Queensland Children’s Hospital.

We were asked this question on Sunday and by Monday night, the plan was just about in motion with final logistics being sorted for what was dubbed Archie’s Great Adventure which would take place on Wednesday, 16 January 2019.

We couldn’t believe it. The thought of being able to take our baby home, even for a few hours, was a dream we never thought possible. Finally, that daily ritual of being inside the hospital walls every single day was about to come to an end.

Archie would lay in his cot for the first time. Archie would see his toys for the first time. Archie would see where he was supposed to grow up, for the first time. The first and only time.

This is a short highlights video of our day. Full videos are linked below.

The logistics

Logistically, it was very difficult to arrange. Firstly, they had to arrange the Queensland Ambulance Service (QAS) and retrieval team to agree to help with the transfer to and from the hospital. Then a portable high flow and oxygen had to be sourced not only for the transfer to and from but also for our apartment. A team had to gain access to our apartment to ensure the medical equipment was set up correctly, that the power boards were plugged in the right spot in the apartment… apparently, they have to be a certain number of meters away from the kitchen.

Nothing about this was simple. We weren’t even sure how Archie would cope with the transfer. If Archie was showing signs of not coping with the move, the whole thing would need to be cancelled as his health was our number 1 priority.

In addition to the multiple teams getting us ready to get on the move, the nursing staff had to put together bags of medication for us to administer for Archie throughout the day, including morphine. We were shown how to give this to him and we were to use our judgement on whether he needed some or not.

This video is about us getting out of the hospital! Part 1…

The morning of Archie’s Great Adventure

The morning had arrived… this was it. It was Wednesday, 16 January 2019, I arrived at the hospital, only to find that our wonderful nurse, Vanessa, had made onesies that said Archie’s Great Adventure and also ones that had the boys names on them. It was amazing.

thewelltravelledfamily Archie's great adventure

Steven and Henry waited at home and I came via Ambulance with Archie.

From the moment we got to the ambulance from the hospital room, Archie was distressed. I thought right away that they would call the whole thing off and we wouldn’t get our day at home. The staff gave Archie some additional medication (morphine) to help calm him down and I gave him some sucrose with his dummy. Thankfully, after a few minutes, it did the trick and he slept the whole way home.

Our time at home

Archie’s journey started with an ambulance ride from Queensland Children’s Hospital (QCH) to home. We were able to take Archie to his room, he had a play in his cot and the moment he was put in the cot, the smiles were there. He was so happy to be at home.

I can’t describe what it felt like to have Archie laying in his own cot, how he must have felt being outside of the hospital. I would have loved to have known what he was thinking. He looked so happy.

From the boys room, we moved into the lounge room. Archie had a lovely time playing chimes with his brother, laying under his activity centre and reading a very special book to Henry.

We were given three books to help talk about grief with Henry when he grows up and one of the books, titled “In My Heart” is a book that Archie was to read to Henry. We took our time and read the book as a family.

The other two books, which I would highly recommend for young children is “The Invisible String” and “Beginnings and Endings with Lifetimes in Between”. They talk about death and feelings in a very appropriate way for young children.

Steven and I were able to spend quality family time together, without any doctors and nurses in sight. The staff who were assigned to us for the day went downstairs to ensure we had our time together as a family without staff standing next to us. Because we had spent so much time at the hospital, we were confident with the high-flow machine and administering medication for Archie. If we ever became uncertain, they were just a phone call away.

Our first family lunch was of course Nandos. As most of you probably know, we love our Nandos and we would have normally gone to Nandos for any special occasion so thanks to Deliveroo, we ordered some Nandos to have at home as a family (of course the boys just had their milk!).

The time for pick up in the afternoon came around so quickly. Thankfully, it took the ambulance crew a while to find the extra large ambulance so Steven and Henry could ride with us, so we got an extra 1.5 hours at home. Because we had a little extra time, we then moved into our bedroom where Henry visits each morning and the boys had a lovely sleep and playtime.

This video is our Part 2! Please excuse some of the sound issues!

A memorable trip to the Brisbane Botanical Gardens

It was then time for Part 2 of Archie’s Great Adventure. A trip to the Botanical Gardens. This was the most special part of the day. Henry and I walked this path well over a hundred times going to and from seeing Archie in the hospital. We always talked about how much Archie would love it in the park, watching the trees, birds and the water. To be able to show Archie these things was the most special moment we could ask for as parents. 

We weren’t expecting the level of emotions we experienced when we got to the park. Whether we knew it was the last stop before the hospital, the thought of it being Archie’s first and only time visiting a park or the first time we had the boys in the double pram, regardless of what it was, it was a really difficult time for us as parents.

Archie seemed to really enjoy his time. The wind blowing in his hair, the birds chirping and his brother next to him. It is how it should have been. But for us, we had an oxygen tank being carried by an amazing Queensland Ambulance Officer, a portable high flow machine which was partially on the pram and Steven had to carry the other component, which was around 12kg. All of this as well as a half dozen staff surrounding us for just in case. Although we had so many people around us, we felt like we were the only family in the park. It was a moment we will never forget.

Part 3 – the gardens! Please excuse some of the sound issues!

The time had then come for us to head back to the Ambulance and be on our way back to QCH.

We felt like everyone had worked so hard to ensure we, as a family, had the most incredible day. I would never have dreamed that after being asked that first question about what we would love to do for Archie, that it would end up being such an amazing, emotional, yet incredible day.

Although we knew it was nearing the end of Archie’s life, we made the most of our time with Archie out of the hospital. Despite the smiles in the photographs, there were certainly plenty of tears shed as well.

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