Leaving a response on the Blog

Hey guys, in regards to being able to leave a response on the Blog, I believe you have to create an account in Blogspot but skip the bit about creating a blog. Hope this helps

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Day 8 - Smiles, walking and discharge planning

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Another early start to the day. Despite ceasing overnight continuous PEG feeds at 4am Alex wasn't interested in breakfast at all. So we've decided to cease overnight feeds all together in the hope it may stimulate his appetite 🤞 After transferring back to bed I received my first smiles since surgery which was just lovely! Hello Alex... Nice to see you again 👋 He was then hooked up for a 1 hour PEG feed via the pump which currently occurs after every meal if he hasn't eaten followed by 3 hourly water feeds.  Neurosurgery are happy with our plan for discharge Friday. The wound is healing well although I literally have to be on constant guard as Alex takes every opportunity to get his hands in his helmet to scratch at those stitches! The Rehab team reviewed us. They were slightly concerned by our decision to discharge Friday but I assured them we have a good team in Newcastle and I felt Alex would improve best at home. He had a small focal seizure while they were...
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Day 2 - Baby steps

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Progressing slowly but in the right direction. Nil further vomiting and managed 5 crackers at breakfast. Enjoyed a short story. CT scan was clear so we have moved from 2 hourly to 4 hourly obs which is particularly good overnight. Alex will be commenced on steroids to assist the nausea which may be a result of swelling on the brain. Skull dressing to be removed today and he will be transitioned from IV to 'oral' (PEG) pain control. This should particularly help to maintain a more consistent pain control as we have been very up and down to date.  Unfortunately our day didn't end as well as it began. Alex was either drowsy or agitated/distressed for the remainder of the day. He didn't eat any more food following the crackers at breakfast and vomited twice in the evening loosing his anti-epileptic and anti-nausea medications. We are currently awaiting a medical review (10:30pm) It was lovely having a visit from an old friend this afternoon though 🥰 Lovely to s...
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Week 1 post discharge (3rd December)

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There's no doubt it's good to be home and back with family.  The first week at home however was not without it's challenges and a hefty workload which I had to face on an empty tank. Besides being exhausted following a number of intense weeks even prior to the lead-up to Alex's surgery I also managed to get sick with a virus that knocked my energy levels to the ground. In amoungst this were the usual challenges of daily life but I suddenly found myself managing a whole lot of other things; many of which I hadn't bargained on such as: - working through complex new medication and feeding regimes - supporting the support wokers with all the medical, equipment and functional changes - arranging the December and January support worker rosters...and then realising that I'll be loosing 80% of my workforce in the new year 😳...enter slight panic mode and re-evaluating my entire life! - loosing my shit with one of the support worker agencies who really doesn...
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