8:15am he's gone under. Now we wait

4 hours in still waiting

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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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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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19 December - 3 weeks post discharge

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So quite a bit has happened in the last 2 weeks but I'll try and do a brief summary... Alex's recovery continued: - walking improved with the assistance of Physio Julie and Kangaroo ankle-foot orthosis  - Appetite improved and he was eating well again - Seizures were almost non-existent except for the occasion 'mini head-drop' often around the time medication was due Matt's father came to visit from the UK which was lovely as Alex has a special bond with his grandad And then on Sunday night Alex became very unwell with Covid. For the first day he had a temperature, shivers and was pretty unhappy. On day two the temperature had gone but the vomiting commenced.  We called an ambulance on Tuesday as we were really concerned about him. They offered to take him in to hospital but as his observations were fairly normal we decided to persist at home for the next few days. We used a pump to administer a slow rate of feed or hydration via ...
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