Day 10 - Homeward bound

Heading home for phase 2 of our recovery and a good sleep in our own beds!

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Day 1 - A bit rough

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Alex is a trooper. The poor guy has been frequently vomiting since yesterday afternoon. He has been unable to eat. Anti-epileptics, anti-nausea and pain relief drugs generally come back up. He looks miserable but remains pretty calm. We are awaiting review by the neuro team but the current thinking is that it's a result of surgery to the brain and should soon settle. Alex may need to have another general anaesthetic today for CT scan.  Visit from Dr Silly and associate Letting the pain meds do their thing CT done without sedation 🙌
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Background

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So most people who know us also know about Alex. They know that he is incredibly sweet and loves a good hug. They also know that he loves to jump on the trampoline, play in water, listen to music and has significant additional needs. Those needs are as a result of a rare and tiny chromosomal duplication called Dup15q which was diagnosed around 7 months of age. So for the past 11 years we have been heavily involved with therapies, medical teams, support workers etc. Alex took many years to learn to walk and remains non-verbal; although he has very expressive eyebrows! For information regarding Dup15q please click here Alex remained seizure free until April 2021. Initially it was just the odd drop here and there. Alex would be eating and his head would suddenly drop forwards often hitting his plate. But he would continue with whatever he had been doing at the time like nothing had happened. I had read about atonic drop seizures in Dup15q and knew it was always on the cards for Alex. I ho...
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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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