19 December - 3 weeks post discharge

So quite a bit has happened in the last 2 weeks but I'll try and do a brief summary...

Alex's recovery continued:
- walking improved with the assistance of Physio Julie and Kangaroo ankle-foot orthosis 
- Appetite improved and he was eating well again
- Seizures were almost non-existent except for the occasion 'mini head-drop' often around the time medication was due

Matt's father came to visit from the UK which was lovely as Alex has a special bond with his grandad
And then on Sunday night Alex became very unwell with Covid. For the first day he had a temperature, shivers and was pretty unhappy. On day two the temperature had gone but the vomiting commenced. 
We called an ambulance on Tuesday as we were really concerned about him. They offered to take him in to hospital but as his observations were fairly normal we decided to persist at home for the next few days. We used a pump to administer a slow rate of feed or hydration via the PEG but the vomiting continued. And despite phone and video support from the Virtual Kids medical team, by Friday morning we realised we couldn't manage him at home any longer and called the ambulance to take him to John Hunter Hospital.
Alex was commenced on IV fluids but the vomiting initially continued. An abdominal x-ray and brain CT were ordered but both were clear. Blood tests revealed that his electrolytes were out of whack along with potassium, nitrates, ketones etc as a result of the vomiting which they felt was simply due to the Covid virus. Unfortunately Alex's body just wasn't in a good position to fight the virus following the surgery.
On Friday night I started to feel rubbish and surprise surprise tested positive for Covid too. 

Hydration was slowly reintroduced via the PEG and feeds are currently being gradually introduced. If all goes to plan we should be out before Christmas... 🙏🎄

Comments

  1. Lizzie RufflesDecember 19, 2022 at 1:31 AM

    So sorry Sarah!! Covid last thing you all need. Hope Alex is feeling better very soon and you're all home for Christmas. Lots of love xxx

    ReplyDelete

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