Hospital Update 2

We are currently in day 3 of ICU and couldn't be more thankful for the care that we have received and the efficient nature of all of the procedures that have taken place.

Cha has had her bone marrow, blood, saliva, stomach bile and bowel movements tested. At this stage, there are no signs of infection or anything to suggest that there is anything more sinister going on. Phew! She has spiked a few temps and kept the nurses on their toes with her heart rate and BP.

Our little Cha has likely had a cold a few other things occurred over the last few weeks that have snowballed into hypertension, low HGB (Haemogloben) and her heart working extra hard. For most people we would fight off any serious illnesses creeping in but as she is 'fragile' she is susceptible to things escalating quickly and this is likely what we have seen here.

The nurses have had to give her extra sedation medication at times as she wakes up and in her truest nature wants to tell them to 'go away'. She also opened her eyes and pulled a few funny faces which is cheeky! The nurses washed and braided her hair, cut her fingernails, washed her down and gave her toy cat to cuddle.

This afternoon we had a family meeting with the medical team to discuss how we work together as Charlotte's shared care in the future, it can be really difficult at times when you just want to be a parent but are also your daughter's primary medical carer. The team were really open to hearing our feedback and listening to what is most challenging for us at times on the day-to-day.

I think we will be in the ICU for this week and likely head to the ward early next week to begin Cha's recovery. I would say we will be here for a few weeks.

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"Are you sitting down?"

Charlotte and I had just got back from our monthly clinic appointment at SCH Randwick and I'd just given her some meds and food when I received a call from an unknown number. It was Dr Spicer, our regular renal doctor, and she said, 'Scott, are you sitting down'? She told me the news that they have a suitable kidney donor for Charlotte. I am normally calm but I just started shaking. As most of you know, our journey here has been challenging but Charlotte has always taken each moment as it comes. We were told this was not going to be a normal transplant and could run into complications but after the 8 hour surgery Charlotte has been showing lots of signs that her new kidney is working well. **Warning** Some images could be confronting to view. 16/10/25 - The day before 17/10/25 - Post Transplant 18/10/25 - The next day

Hospital Update - Week 4

17.05.24 On Tuesday this week, Charlotte went under general anesthesia to have a scan done for all the different teams to discuss her kidney transplant. We won’t, however, know the information until the 11th of June so you can imagine we are both excited and anxious. Charlotte’s potassium has been higher than normal over the last week so medication was given and several ECG’s done to monitor any issues which all came back fine. The renal doctors are fine-tuning her medication and dialysis regime for us to hopefully go home soon. Charlotte still gets her observations (blood pressure, heart rate and temperature) checked every 4 hours so they can calibrate her BP suitable for going home. This hospital visit has made me realise that having a boring home routine is a good thing. Even if at the time you think your life is not exciting, this I feel is a good thing. Getting out of your comfort zone is important but being bored is underrated. I would give anything to do 'normal...

Hospital update 1

Hospital Update 1: Charlotte's hemoglobin has been slowly declining for the last few months. Her blood test last Friday showed the levels are very low. It was yesterday (Monday the 22nd) when we noticed Charlotte's behaviour really started to change and quite quickly. Kristal took Charlotte into Sydney Children's where she was rushed into emergency. Charlotte was moved a few hours later from Emergency to ICU where she currently is now. What seems to have occurred is the low red blood count has increased her blood pressure and potentially caused liquid to fill her right lung. Yesterday Charlotte had a blood transfusion and as I'm writing this she having her lungs drained of the fluid. At 3:45pm she will also have a bone marrow biopsy. She is sedated and the ICU have been amazing. We are also ok. We are looking after ourselves and each other. We expect Charlotte to be in ICU for about 7 to 10 days and the doctors have said she is in a stable condition.

THE CHA CHI

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