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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Day 3 - Light at the end of the tunnel

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So the last 24 hours have been tough. Alex's recovery felt like it took a backwards step. He was either extremely drowsy or agitated and in distress. I felt helpless watching him, unable to alleviate his discomfort and not knowing what to do except to buzz the nurses and work through the situation with them. Knowing exactly what the problem was became a process of elimination, educated guess-work then trial and error. Alex can't tell us and sometimes despite our best efforts to figure it out, we get it wrong. He stopped eating after breakfast yesterday. He was upset, his eyes started flicking up and down, he started shaking and vomited twice over the course of the evening needing full bed and clothing changes. The senior on-call doctor was paged and arrived at midnight prescribing an increase in IV fluids. The 6 bedded ward which has been home for the past 3 days was as busy and noisy as ever with multiple very unwell and distressed children. There was little sleep. Needless to...
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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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