Alex's Callosotomy Journey

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

Hey there team Alex,  So we're on the final leg of our inpatient stay and plan to head home tomorrow -  HOORAY!!!🎉  Another busy day with input from multiple teams - neurosurgery, neurology, rehab, OT, Physio, Speech, Dietitian and Nursing.  I've now got my head around PEG pump feeds (I think) and have been completing these myself on the ward as Alex is yet to eat sufficiently. Alex got his stitches out today and the wound is looking good Alex had about 4 seizures today. They were all short lived (around 5 seconds) and present differently to his pre-surgery seizures. We are still trying to figure them out. The surgery has significantly reduced the atonic seizures but it won't stop the tonic ones and that's what we are seeing. They do impact him functionally for a period afterwards; especially when trying to walk. The neurology team feel that medication is the only way to gain better control of these types of seizures. So we will need to continue to play ...

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...

Had a relatively peaceful night with an early start this morning at 5am. We've stopped the morphine and will move over to Panadol and Nurofen. We will also commence reducing steroids and anti-nausea medications. This was the second round of morning meds so still on quite a bit! Nil breakfast this morning despite my best attempts at offering him a bit of everything I had at my disposal! We went for a walk in the stroller off the ward for 30min. I noticed Alex didn't look so great so brought him back. Whilst transferring him to bed he had a seizure. It only lasted about 5 seconds and he recovered quickly but I was concerned and raised it with the team.  Lunch didn't go so well...so we had to complete a feed later via the PEG The Physiotherapist arrived and we walked Alex about 10m with assistance which was fabulous as it's the first steps he's taken in a week. He is very unsteady but it was lovely to see him on his feet again. I ins...

It was a busy one today and I'm only now getting a chance to stop for a break at 9pm. The day was a constant stream of staff visits/reviews, drug discussions & administration, settling, changing, feeding, re-positioning and trying to manage the constant barrage of noise and stimulation that a room of 6 unwell children, their families and medical teams bring. So in addition to reviews from neurology and neurosurgery we were also seen by Dietitian Claire, Occupational Therapist Jess and Physiotherapist Eve.  The Dietitian has progressed Alex's re-feeding plan however he will remain on IV fluids for at least another day as his potassium continues to be low. We trialled him on some food at lunch and he showed interest and had a go at his sandwich and some chips which was a great start. The Physio and I got Alex sitting on the edge of his bed and on his feet for about 3 min each. The OT was looking at ways to get Alex out in his chair with all his leads in tow. In th...

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

Check out who's out of recovery and on the ward! And not only that, is moving both arms and legs, clapping and making some sounds! Yes it's Superstar Alex 💪. His surgeon reported all went very well with no complications 💃🎉

4 hours in still waiting

Lovely set-up here for families. And Baker's Delight donate their bread and scones which was a win 😋! Penny loved playing with all the kids in the enclosed playground and buying some crazy socks. Early start with kick off at 6:45am 😳

PCRs completed all packed and on our way

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...