Part 3 of Joshua's Journey
Joshua David Chalmers HeartKid Journey
Part 3: Life In Hospital (March & April 2019)
March was our third month in the Royal Children’s Hospital. We were pretty much just stuck in a holding pattern, waiting until Joshua’s next surgery scheduled for the start of April when he would be three months old. Joshua managed to stay in Koala Ward for the whole month and continued to grow and progress. Sharon continued to build connections and relationships with the other Heart families in the ward.
As Joshua got stronger, during this period we started seeing a lot of ‘firsts’ and milestones. When you’re robbed of ‘normal’ and living day-to-day and even hour-to-hour, when the milestones happen it’s extra special and we made sure to celebrate everything as a family. Late February saw Joshua’s first proper bath and tummy time. At the start of March we were able to leave our room, put Joshua in his pram and go for a walk around the ward. Toward the end of March we were allowed to go downstairs and outside for the first time. All such simple things, but for us they were huge and we were so proud of our boy and the progress he was making.
As April approached, Joshua’s second open-heart surgery, the bidirectional cavopulmonary connection (BCPC), was confirmed for the 1st of April. During the days leading up to it, the nerves began to build as we emotionally and mentally prepared ourselves. This surgery was not as complex or risky as the Norwood and we were struck by the confidence and nonchalance of the surgeons every time they discussed it with us, but it still didn’t make us feel any less nervous.
The surgery ended up getting postponed two days in a row, which was frustrating and emotionally draining, as on both days we weren’t given a time and were just sitting around waiting until the postponement was confirmed in the mid-afternoon. It did mean that there was a child who had a more urgent situation than Joshua did, but honestly we just wanted to get it done.
The BCPC finally happened on April 3rd, the day Joshua turned three months old. He was wheeled out at 8.30am followed by cameras and ‘paparazzi,’ as the Sunday Herald Sun were doing a story about his journey to promote the Royal Children’s Hospital Good Friday Appeal in mid-April. We want to thank Brigid O’Connell and photographer Jay Town for doing a great job. We then had the fun task of packing up all our clothes, toys, books etc. in preparation for moving back to Rosella Ward. As the room in Koala Ward had basically been our home for two months there was quite a lot of stuff, so I had to take most of it back to our room at Ronald McDonald House since we couldn’t stay over in Rosella Ward and could only keep minimal possessions in the room.
Sharon and I had talked about what we would do to keep ourselves occupied for the day and decided to go and see a movie at Crown Casino. In three months Sharon had only left the hospital a few times, so it was good for her to be able to get out and about. At 1.45pm (during the movie!) we got the call to say that Joshua’s surgery was successful. After the movie we rushed back to the RCH but ended up sitting around for a few extra hours as Joshua’s recovery was delayed. When we finally got to see him it felt like a step backwards, even though it wasn’t. He was once again on breathing support and covered by tubes and wires, but he was also older, bigger and stronger than he was at the beginning.
Moving back to Rosella (PICU) was a huge adjustment, particularly for Sharon, after two solid and largely positive months in Koala Ward. We had enjoyed the freedom and bigger space of our room. Now we both had to leave each night and the harrowing memories of Joshua’s first month were all brought back.
Most babies who have the BCPC aren’t in Rosella Ward for very long as the recovery time is a lot quicker. Joshua ended up staying for a week and was not in a good way. Febrile temperature, low SATS, high heart rate, urinary tract infection, diaphragm concerns and another collapsed lung made it a difficult time. But like every other obstacle to that point Joshua, with God’s help, managed to overcome it and we made it back to Koala Ward on April 10th, exactly one week after his second open-heart surgery.
On April 9th we were interviewed by Brigid O’Connell from the Herald Sun for the Good Friday Appeal story. Being able to tell our story and what we’d been through from the very beginning was really quite cathartic and made me realize how much I was holding in and not processing very well.
On the day we moved back to Koala Ward, we walked in in the morning and something about Joshua was different. He had no breathing tube in, and was breathing on his own for the very first time! This was incredible and we were so proud of our boy. Once we were back in Koala Ward and Joshua started breathing on his own, the main focus shifted to when Joshua would be discharged. Before this could happen he had some health goals and targets he needed to meet, but the medical people were confident we would be out by the end of April.
The events of the middle of April centred around The Royal Children’s Hospital Good Friday Appeal. It is a massive event in Victoria that raises millions of dollars for the hospital every year and overshadows, even replaces, the traditional religious focus of Easter for most people. As much as I wanted to be able to take Joshua home, secretly I also wanted to still be in the RCH so we could experience the day.
In the lead-up, as well as getting an amazing double page spread in the Sunday Herald Sun, we were visited by Essendon Football Club players Andrew McGrath and Mason Redman. Essendon and North Melbourne were playing a fundraising football game on Good Friday, so as part of the promotion for that players from both teams came to visit the hospital. I made it known to the right people that Joshua was an Essendon supporter (he’s also a Kitten Crew member with Sharon’s team Geelong) and would love a visit. We also featured prominently on Bomber TV, the video that the club made about the day.
Good Friday was on April 19th and I got my wish, as we were still in the RCH. It was a magnificent, magical day. We received visits from Elmo, Dora the Explorer, the Easter Bunny, Frozen characters, Princess Belle, Melbourne Vixens netballers, football players from Richmond, St Kilda and Hawthorn, and dancers from the Australian Ballet. Joshua did really well the whole day. He was awake pretty much the whole time and didn’t cry or vomit once (which was a big deal since, on top of everything else, he suffered from severe reflux). We were able to share his story with lots of people and even got a short interview with Channel Nine News as part of their coverage of the day.
The reality of our situation as the parents of a child with an incurable heart disease was made clear to us. Quite a few of the families in Koala Ward while we were there were waiting for a heart transplant for their children, and their kids were on a Ventricular Assist Device (VAD) machine. Toward the end of our stay, in the space of a few weeks four of those children received heart transplants, while another four families we got to know lost their children. Life and loss in equal measure.
Discharge day finally arrived on Wednesday April 24th,, 2019. 111 days after Joshua’s birth and three weeks after his second open-heart surgery. It was tough saying goodbye to the staff and other families who we had become close to. We knew how it felt seeing families come and go, so we were careful to do it in a way that was sensitive and not seen as ‘rubbing it in’ that we were going home and they weren’t. Joshua was still being fed through a naso-gastric tube and was on four medications several times a day just to keep him going, so while we knew it would be tough we still celebrated this next big step in Joshua’s progress.
Unfortunately our joy was shortlived. After three days at home we could see something clearly wasn’t right with his breathing and temperature and when we notified Hospital-in-the-home they advised us to take him back to the RCH, just to get him checked out. He ended up being admitted again for another three-day stint.
One thing that was disappointing about this for us was that we were all ready for the special occasion of taking him to church for the very first time. Our church family is very significant to us and they had being praying and providing for us right from the start. We let our Pastor know and they very kindly arranged to livestream the service so we could watch from Joshua’s hospital room and gave him a nice shoutout.
On April 30th we were discharged again, ready to re-start the next step of our new life at home as a family. We are indebted to our cardiac surgeons, the medical staff in Rosella and Koala wards at the Royal Children’s Hospital, Ronald McDonald House and HeartKids who helped us during our stay. We are committed to raising ongoing support and awareness for these amazing organizations.