Day 7 - Medication weaning and seizures

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 insisted the cannula come out as his potassium is now within normal levels and we are managing fluids and feeds via the PEG. The team preferred it stay in place in case he required Midazolam following a seizure. But it was aggrevating him so much so I insisted it come out.

Unfortunately, no sooner was it out and Alex had a 2 min seizure. A nurse pressed the emergency button and we had about 15 people at the bedside within seconds. Alex was monitored but the seizure took it's toll on him and he was very drowsy. I found it incredibly upsetting after everything we've been through. But after talking to the Neuro Team we've decided to increase one of the anti-epileptic medications that had been reduced. So fingers crossed we have better seizure control tomorrow.

No luck with food again at dinner. So decided to lift the mood with a nice long relaxing bath
Tomorrow's another day and a step closer to home. The Physio has said Alex won't be able to manage our internal stairs in time if we were to discharge at the end of the week. We could stay longer for rehab but Matt and I feel we could manage this at home as long as he is medically stable. So our goal is for discharge Friday. Let's see how we go

Comments

  1. John FisherNovember 22, 2022 at 1:31 AM

    What a mixed bag. So sorry to hear of the seizure.

    ReplyDelete
    Replies
    1. SarahNovember 22, 2022 at 3:01 AM

      Yep it felt like a huge blow but I'm hoping we've found a possible reason. Time will soon tell...

      Delete

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