Daily kms + some updates on dad's journey
Friday 30/10/20 : 11.8km today.
Saturday 31/10/20 : 14.6km today. Thankyou to everyone for following our journey and for the continued support. Today was a tough day for us all. May tomorrow be better.
Sunday 1/11/20: 17.1km today - many, many laps around the hospital waiting for news.
Monday 2/11/20 : 10.7km today. Dad has been off sedation for a while now, but has not woken up. He is scheduled for a CT brain tomorrow to ensure there is nothing sinister. Dad still has high oxygen and ventilation requirements, so will have a CT chest at the same time.
Tuesday 3/11/20 : 15.9km today. Dad's CT brain showed no abnormalities, which is excellent news. We are just hoping he wakes with more time off the sedation. We will get the formal results from his CT chest tomorrow.
Wednesday 4/11/20 : 10.3km today. Dad is very slowly showing some signs of waking. He is able to obey some commands like squeezing hands and shaking and nodding his head to questions.
Thursday 5/11/20 : 13km today. Dad is doing much better. He is waking and only requires enough sedation for tolerance of the ventilation tubing. I cannot believe he is 'back with us'. He is planned for extubation tomorrow.
Friday 6/11/20 : 11.1km today. Dad was extubated today. Mum was visiting dad today and through loud speaker on mum's phone I head dad's voice for the first time since he went into the hospital on Friday 23/10/20. I heard him say my name. I will see dad tomorrow afternoon. Thankyou to everyone for the continued support.
Saturday 7/11/20 : 14.9km today. The team have discovered a lump on dad's liver, his kidney and his lung. We are hoping these nodules are nothing sinister that will inhibit his ability for further treatment including LVAD.
Sunday 8/11/20 : 11.9km today. When I asked dad 'Are you ok dad? He replied: "Yeah, I'm just worried about you guys". This shows exactly the man my dad is - a wonderful one.
Monday 9/11/20 : 11.5km today. It is sinking in that dad's heart fails him and he will require heart transplant. We understand that this is not a simple procedure that will happen tomorrow, rather he will need to tick a lot of boxes and reach a lot of smaller milestones before he is considered a candidate and appropriate for surgery.
Tuesday 10/11/20: 9.3km today. Mum and I both got to see dad today after a family meeting to discuss dad's progress and future treatment plans. I was so happy to hear the team talking about my dad in such a positive way. I could tell that they truly have gone above and beyond to understand who my dad is, and what he is like. Dad has been accepted for an LVAD (left ventricular assist device) as long as his PET scan is clear. We can only hope.
Wednesday 11/11/20 : 17.7km today. You can tell which days are the most stressful for me by the k's I clock up to keep myself busy. Dad should be out of his PET scan by now. I am extremely anxious for the results and praying that whatever the mass is on dad's lung (as the other 2 lumps; liver and kidney have been given the all clear) is nothing which will exclude him from being a future transplant candidate. I saw dad this morning and he said to me 'it is what it is'.
Thursday 12/11/20: 12.7km today. Dad's PET Scan was clear which is excellent news. He is planned for theatre for the external LVAD tomorrow. We are all extremely worried but hopeful that this surgery will be a success and the right side of dad's heart can cope with the new workload.
Friday 13/11/20 : A smaller day today - 8.5km Dad went to theatre for his external LVAD today. The surgery went to plan, he is intubated and the plan is to see how his heart can cope and gradually wean him off supports to be extubated in the coming days.
Saturday 14/11/20: 11.7km today
Sunday 15/11/20: 14.9km today
Monday 16/11/20: 10.9km today. I saw dad this afternoon. He has been extubated for a couple of days but is struggling from a respiratory point of view. We are really just hoping at this point he won't require reintubation. He is exhausted and it is difficult to see him struggling. He musters up SO much energy however to interact with us when we visit.
Tuesday 17/11/20: 18km today.
Wednesday 18/11/20 : 10.9km today. Dad's respiratory function has definitely improved since I saw him 2 days ago. He is alternating between the non-invasive ventilation and the high-flow nasal oxygen.
Thursday 19/11/20: 9km today. Dad is struggling from a psychological perspective. He is extremely anxious.
Friday 20/11/20 : 18.1km today. Dad looked so bright today. He was still tired (post physio and multiple visits from multiple teams throughout the day). From a strength perspective he is doing so well, and has been able to sit on the edge of the bed with assistance during physio sessions. He was able to be pushed to the window today to look into the garden. Dad has been visited by the psychologist and I feel a lot better knowing his mental health needs are being taken care of during his most difficult time to date. I asked dad today what he would like me to download onto his iPad for him to watch, I was hoping something simple like 'Netflix' or 'abc news', but he made a very specific request for 14ft single hull fast sail boat races... so I know what I will be busy googling tonight. Dad has a passion for sailing and it was lovely to hear this spark reignited.
Saturday 21/11/20: 15.6km
Sunday 22/11/20: 12.6km.
Monday 23/11/20: 13.5km. Dad was amazing today. He was so bright. He was waving his 2 thumbs up all over the place and so excited to chat to a few people on the phone. He is in very good spirits and managed to walk his first few steps with physio. He remains with the external LVAD, some supports for blood pressure and other bits & pieces but overall is doing well.
Tuesday 24/11/20: 17.6km today. Dad didn't get a lot of sleep overnight but was still doing really well today. Today marks one month of dad being in the Alfred hospital - I got him a celebratory "happy one month" card, and a real cappuccino that he has been requesting for a long time but unable to have due to a lack of thickener (and he is on thickened fluids for his dysphagia). I managed to order in some thickener so got him a surprise cuppa - which he couldn't stand the taste of ! Looks like his taste buds have forgotten what quality coffee tastes like and developed a liking for artificial thickened juices ! haha.