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Phoebe's Journey

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Rockhampton, QLD
Phoebe's Journey

Phoebe Pie �

05/11/2025

Had a checkup yesterday! ❤️ is amazing and we are back to 12 month checkups 🥰

18/09/2025

Received the Growth Award for my hard work in Maths this term! Smashing goals everywhere!

09/06/2025

Player of the match for netball tonight ❤️

12/05/2025

Today we are officially 12 weeks post op baby!!! Received the clearance that Phoebe can now live a normal life with no limitations! So obviously joining her first team sport ever was on the list. She is now officially a Frenchville Ponies player 🐴☄️🥹

23/04/2025

Today Phoebe is back at school. She is super excited to see all of her friends and to start learning Year 2 🧡

14/03/2025

Phoebe has been in and out of hospital since Monday night with temps again. She was admitted on Wednesday and tonight we are finally back home in our comfy bed. Antibiotics for 7 days plus more bloods 🤦‍♀️

03/03/2025

Surprise we are HOME 🏠

Sorry we went mia, we wanted to come home and surprise all of our loved ones.

Phoebe is doing amazing and is soaking up all of Milly’s kisses.

27/02/2025

⭐️ Day 10 ⭐️

Today started as every other day with a visit from the doctors who were very happy to hear that we’ve had no temps overnight. All bloods and cultures came back negative so still not sure what was causing the temps. They mentioned maybe discharging us tomorrow if we continue the no temps and of course another blood test is required (Phoebe is not impressed but we will stress about that tomorrow morning)

Phoebe got dressed in normal clothes and was great to hear that nothing was irritating her scar 👏 We left the hospital for a few hours today and walked down to Southbank where we ended up at the Cinema. We got back to the hospital after lunch and Phoebe spent the remainder of the day at the Starlight Room visiting her favourite Captain Hiccup where she also got to paint his face, finished off with a Disney quiz which Phoebe came third and won a prize.

Hopefully we all manage to get a decent sleep tonight.

26/02/2025

⭐️ Day 9 ⭐️

As we mentioned this morning we kicked off today with some crazy high temps overnight which the team of doctors, surgeons, and nurses here are working hard to try find the cause. This involved a blood test being scheduled for this morning for cultures, which poor Phoebe is well and truly over! 😪
The team are very happy with how Phoebe's scar is healing up, it looks really great!
After a test which unfortunately saw multiple goes at trying to draw some blood in various locations (with some amazing support and comfort from nurse Christian), we decided to have some fun and go for a walk around. After a special treat of a chocolate from the vending machine and then a quick visit to the cardiac outpatients rooms, we visited the Starlight Room again 😁
There Phoebe giggled with a very sassy character who she first met pre-surgery, and got her face painted with flowers and rainbows. There was even a girl playing some of Phoebe's fave songs on the ukulele while Mum read Phoebe some books.
After that Phoebe spent some time with Nan (we suspect both were mostly napping) whilst Mum and Simon made the move to our other accommodation for the next couple of days. Phoebe had a visit from the hospital school who left some worksheets for her to complete.
Her temperatures have been mostly stable today, with antibiotics scheduled over the next couple of days and more investigation happening into pericardial effusion (fluid around her heart) as a cause for the fevers.
Although concerning we aren't out of the woods yet, we are confident she's in the best hands here ❤️

25/02/2025

⭐️ Day 8 ⭐️ - late posting again!

We started the day with another echo as Phoebe has fluid around her heart. We had a special visit from the Clown Doctors who made Phoebe laugh and giggle for ages. We went and collected our special heart beads, every beads means something. Last night we had special visits from some lovely ladies doing arts and crafts and they made Dugly look beautiful! We were then lucky enough to have a special visit from Radio Lollypop where Phoebe was featured on the radio and they left her some goodies. Phoebe also had a sleepover with her nanny! Overnight we reached a temperature of 38.8 which is very concerning and has now delayed us again as they need to find the cause of the temperatures.

24/02/2025

⭐️ Day 7 ⭐️

Sorry late posting- day 7 was a HUGE day for us all, especially Phoebe! 😪
We started the day with an Echo to see if she could be discharged soon- painful around the incision and drain sites but Phoebe battled through it. We got some amazing news from that- her aortic valve mean gradient (mm/Hg) has nearly halved, meaning her first surgery was a massive success in repairing her valve and improving it's function, which should buy us some time before more intervention!! ❤️
Lots of walking in the morning, watching the school kids playing soccer on the carpark rooftop soccer fields.
Next was the removal of her incision dressing 7 days post-op, and removal of her drain stitches- nurse Christian explained the process to Phoebe with a diagram. This was a VERY painful process for Phoebe as they had to pull quite hard on the stitches to get under them to cut them away. Good news is her incision looks amazing and is healing really well. Because she was a trooper Christian let her pick a prize from the ward prize cupboard! She chose a Bluey activity set 😊
10B have a pet wall so we decided to surprise Phoebe by sending them a photo of her puppy Milly to go on the wall with a label "Milly, owner of Phoebe". Phoebe was thrilled to see Milly up there 😊
Next was a visit to the Starlight Room downstairs and some story books reading with Mum.
After the ok from the docs, Phoebe was discharged after lunch and we headed back to our apartment close by for a few days to make sure everything was ok before making the trek back to CQ.
Unfortunately she ran a high temp a couple hours after settling in at home, which rings alarm bells for cardiac post-surgery patients. She also had some other worrying symptoms.
A prompt visit from the amazing Ambos and we were back in the ED at QCH, then soon back to our old room in the cardiac ward for a couple more nights. She was pretty excited to be allowed to turn the ambulance lights on as she got out 😉
Phoebe has a slight infection and has had IV antibiotics and is being closely monitored around the clock. Although back a couple steps its comforting to know she's in the best hands and we didn't stray too far with her still obviously needing some extra support.
She is feeling ok this morning, though exhausted after a big day of movement and pain yesterday and a restless sleep, but looking forward to a day of rest today around a few more tests. ❤️

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Rockhampton, QLD

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