Alex's Callosotomy Journey

Hi guys,  I missed updating yesterday's entry and wanted to add some noteworthy news - Alex had his first shower yesterday which he enjoyed and felt like a big step in the right direction. He was re-cannulated (the previous two had to come out) to ensure he is receiving adequate fluids in addition to his continuous PEG feeds. This is to avoid something called re-feeding syndrome. Refeeding is the process of reintroducing food after malnourishment or starvation. This has occurred following a bout of gastro in the week previous to the surgery after which he has been too unwell to eat. Refeeding syndrome is a serious and potentially fatal condition that can occur during refeeding. It’s caused by sudden shifts in the electrolytes that help your body metabolize food. But the team are on top of it and he is having daily bloods to track his levels.  The ward is being decorated in a magical underwater theme which Penny absolutely loved and congratulated the staff on their ...

Enjoyed a beautiful sleep last night and some morning rays with a coffee at Ronald McDonald House. It's McHappy Day today so make sure you grab a Big Mac and support a wonderful organisation. Received a gorgeous bunch of flowers last night from the Desparate Housewives crew which has brightened the room up - thanks ladies ❤️💕   And Alex looks in good form too so we're kicking goals today 💃💪🎉 We will attempt his first shower in a bit on the commode. He will need to be re-cannulated today for ongoing IV fluids and regular blood testing. He is yet to have food orally but the continuous PEG pump feeds are giving him a good kick start

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...

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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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 🙌

So we're all ok but I discovered that the red emergency buzzer works really well! Alex has been quite violently ill twice this evening. The second time I yelled for help and a parent hit the emergency button. Needless to say we've been well seen to now! Poor chicken, I didn't think you could vomit that much when you haven't eaten for a day! They've given him anti-nausea medication, antibiotics and anti-epileptics will be staggered to reduce the chance of them coming back up. He's also developed a sporadic tremor in his legs. Neuro have reviewed and will monitor