Day +22: Our Big Day Out

Guess who had a day out today?
Go on, guess.
Any ideas?
Ready to give up?
OK, I'll give you a hint.
Three people had a day out today. Their names begin with J, G and S.
Yay! Congratulations! You guessed correctly! We ALL had a day out today.
Together.
At the same time.
Away from the hospital!

Whilst Jonathan and I have had time away from Club 2W17 @ La SCHotel Randwick, individually and together, Sean had yet to step foot outside of the hospital since the admission date of 20 March. Almost a full month later, he was granted "day release", and we went out for a few hours in the afternoon.

Earlier in the day, Jenny came by to sit with Sean while he was sleeping. We'd arranged with Jenny to drop by, so Jonathan and I could go out for a nice meal of sushi. My friend Danie had recommended Sushi Fusion as THE sushi train to go to in Randwick, so even though the weather was inclement (to say the least), we planned to head up there at lunch time to sample their wares.

The doctors continued to be amazed by Sean's recovery, and strongly encouraged us to go out today. We wanted to go somewhere close to the hospital, but with the weather being so foul, we needed to go somewhere indoors, and decided to go to my parents' place for a couple of hours in the afternoon. Too many things were happening in the morning, and we generally had more time in the afternoon anyway, now that Sean was only sleeping once a day, starting from between 11am and 11.30am, and sleeping until 12.30pm at the earliest.

Verena and Kylie came by to spend time with Sean, playing music and dancing. Sean just loved these sessions, and we were so lucky to have the play therapy and music therapy services available to us. With Sean disconnected from all the machines and pumps during the day, it was a lot easier to do fun things with him without worrying about Sean getting tangled and caught up in all lines.

Jenny was very punctual, as always, and arrived at 11am. Sean was getting tired and he drifted off to sleep within minutes of being wrapped in his blanket. Just as we were about to head out for lunch, Dr Gray stopped by for a visit, and it was lovely to see him. We caught up with Dr Gray on Sean's progress, and like all the other doctors, Dr Gray was amazed by Sean's improvement. We talked a bit about doing genetic testing on me to look for the mutant gene that caused SCID in Sean, and he told us that he had been talking to and working with the Genetics Department to get some tests happening. This was something Dr Gray had raised around the time when the transplant team thought they had found a cord blood match for Sean, and it was something both Jonathan and I were keen to see happen, as soon as Sean was well enough for us to contemplate these tests.

With all the doctors so pleased with Sean's recovery, Jonathan and I were keen to get the ball rolling on the genetic testing. Megan was chasing people for us, and then Dr Percival paid us a visit on Monday, just to see how Sean was. During her visit, I asked Dr Percival about the genetic testing, as I was getting rather impatient to have the proper discussions with the right team of people. Dr Percival promised to talk to Dr Gray, and also to liaise with the Genetics team. This led to Dr Bernadette Hanna paying us a visit late yesterday afternoon to have a preliminary chat with us.

Dr Gray assured us that he had put the ball in motion with the Genetics team, and was pleased to hear that we'd already been paid a visit by Dr Hanna. Dr Gray said that some other people from the Genetics team would be paying us a visit soon, so we hoped to hear from someone soon.

We had some excitement en route to the restaurant. Jonathan wanted to show me the "secret squirrel" way we would need to enter and exit the hospital with Sean to avoid the construction works that were currently taking place. Half way there, we decided that since we were going to be using that route later in the day, we should head straight to lunch instead of taking the scenic route.

We headed towards the exit of the Prince of Wales Hospital, and heard some shouting. The shouting became very intense, and the man doing the shouting was using very colourful language. He was favouring the words starting with F and C a lot, and in a number of combinations. He was surrounded by hospital security, and was yelling about someone taking away his pills and that he needed them. He was clearly distressed and needing help, but he was also very scary.

As this very disturbed individual was blocking the exit, we were scratching our heads wondering if we would make it to our lunch date. Just as we were thinking of turning around and heading back towards the "secret squirrel" way, we overheard a passing staff member offering to take people out of the hospital, so we followed and exited the building.

Such excitement every time I venture out of the hospital for lunch!

Lunch was lovely. The restaurant was a good 10 minute walk away from the hospital, and it was great to get some fresh air and a tiny bit of exercise, even if the weather was less than wonderful. There were a few other diners in the restaurant, and we were greeted warmly by the staff behind the train. We sat down, and looked at all the yummy dishes of tasty morsels in front of us.

While the service was a bit patchy - we looked to a waitress for some water, and she stood about 1m away from us, too busy playing with her iPhone to wait on us. The food was excellent - the raw fish tasted fresh and we watched the chefs make the sushi and rolls in front of us. We picked out some plates and tucked in. Oh, sushi, how I've missed you.

We ate so much sushi, and really enjoyed our meals. It was nice to sit down to a meal with Jonathan, just the two of us. When we'd had our fill, we went to Best & Less and bought a couple of beanies and a hat for Sean. By this point, it was time to back to the hospital room.

Sean was still asleep when we got back, so we waited for him to wake before getting ready to head out. We bade a fond farewell to Jenny, who had been such a help over these last few weeks.

Once Sean was awake, we got ready to head out. We put a mask on Sean, and walked out of the hospital. Down to the car park. Strapped Sean into the car. Drove out of the car park and headed over to Dad and Mum's.

Sean had a great time tearing the place down. There were so many toys to play with, and Sean went to town. Mum had a great time playing with Sean, and Dad perked up to see Sean so active and happy.

With a planned gate leave for an overnight stay at home tomorrow, and with no food at home, we arranged to have dinner with Dad and Mum tomorrow night. Time flew and we had to leave to get back to the hospital for Sean to get his medications and for his afternoon weigh in, but we were certainly looking forward to returning for dinner tomorrow night.

There was a lovely surprise waiting for us in our room when we got back. A new sofa bed had been delivered and installed in our room, and I was looking forward to trying it out tonight. The old sofa bed was well and truly past its use-by date, with the once comfortable mattress now only centimetres thick. One question remained - why couldn't this have been delivered 4 weeks ago???

We had a visit from the Genetics team very late in the afternoon. We met Dr David Mowat, who is a Clinical Geneticist and Bec Macintosh, the Genetics Counsellor. They went over the same information as Dr Hanna did last night, and gave us written information too. The first step was to get me tested to make sure that I was the carrier of the mutant gene. Bec promised to drop by with consent forms and the paperwork for the blood tests before we were discharged.

The only down side to our day was Sean's increasingly red and sore bottom. As he was eating solids again, he was also pooping a lot more, and this has caused his bottom to become very very red, and very very sore. Jonathan and I are going to try our best to prevent the skin from breaking, as this could cause a lot of problems for Sean, and delay our homecoming plans.

Tomorrow night, we go home to sleep for the night. We all get to sleep in our own beds tomorrow night, and I cannot wait to fall asleep next to Jonathan!