Week 1 post discharge (3rd December)

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't understand Alex or our situation at all and created a mini nightmare this week
- arranging, ordering and coordinating various equipment needs such as pump tubes, a ramp, shower commodes, a hospital bed for respite care, walking belts/harnesses, ankle-foot orthosis etc
- coordinating and attending various allied health and medical appointments required as part of Alex's discharge follow-up
- Chasing Department of Education about a crucial piece of equipment Alex will need next year which was submitted in April
- Spending over 3 hours sorting out an issue with NDIS
- Chasing Assistive transport about Alex's request for wheelchair accessible transport next year (approved but currently no aide available)
- Emailing Royal Carribbean who are still yet to give me an answer regarding my request for a refund on the cruise that I had to cancel as a result of Alex's surgery...

....so yes, I was feeling frazzled to say the least

In amoungst this process however we experienced absolute joy in seeing how incredibly well Alex was recovering. His seizures have settled down almost (and I barely dare say it) to the point where we don't see a seizure all day! And when we do they are so mild and short that don't really impact him! AMAZING!!! He is more focused, interactive and too as a result

He has started eating to the point I'm wondering what the heck I'm going to do with all those Ensure Plus feeds! 😂
He's getting stronger on his feet everyday and so we're needing the stroller less indoors. He is starting to take a few steps on his own and attempting to get up from the floor without support. The increased clonus in his right foot following surgery is slightly problematic at present for mobility and transfers. We have strategies to manage however and are having regular Physio input to support. 
Bowels continue to be a bit of a problem but again we are dealing with it...

We have also been so touched by the continued well wishes, offers of support, donuts...
and a visit from Alex's school principal to pass on a card from his class and gifts for Penny and Alex!
I've taken Penny away this weekend as a bit of a mini-break for me and to give her some quality time. I don't know if 'break' is the right word for this weekend but it's definitely been nice to focus on her without all the distractions of home.
So next week I am meant to start my new job after delaying my start date for the past month. Matt has just rung to say our main support worker (who worked with Alex today) has just tested positive for Covid....

So we'll see what next week brings us 😊 
Keep smiling 

Comments

  1. Mandy MarksDecember 12, 2022 at 2:43 PM

    Glad to see that Alex is looking bright and healthy. The photos are lovely, all of class one had a look at them this morning. We wish you all a very merry Christmas!
    From all your friends in Class 1

    ReplyDelete

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