Alex's Callosotomy Journey

There's no doubt it's good to be home and back with family.  The first week at home however was not without it's challenges and a hefty workload which I had to face on an empty tank. Besides being exhausted following a number of intense weeks even prior to the lead-up to Alex's surgery I also managed to get sick with a virus that knocked my energy levels to the ground. In amoungst this were the usual challenges of daily life but I suddenly found myself managing a whole lot of other things; many of which I hadn't bargained on such as: - working through complex new medication and feeding regimes - supporting the support wokers with all the medical, equipment and functional changes - arranging the December and January support worker rosters...and then realising that I'll be loosing 80% of my workforce in the new year 😳...enter slight panic mode and re-evaluating my entire life! - loosing my shit with one of the support worker agencies who really doesn...

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...