Day 5 - Starlight Room outing

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 efforts!
We had Alex's support worker Julia help us out over the weekend which was great. It's a maximum of 2 adults per patient on the ward so Matt and I could be in and out during the day while the other was with Penny. Julia's daughter made Alex an adorable lion which is super cute ❤️
Alex was allowed out of the ward for a short period today which coincided with a suprise visit from Uncle James! We visited the Starlight room as a family which was really special
We had some issues with constipation (not surprising given the number of drugs put through his system) but after two Microlax and a Fleet enema we eventually got some relief.

We've noticed a HUGE reduction in seizures. I know it's early days and Alex hasn't been very active but this is such a positive result!! Fingers crossed it continues.

We're a bit agitated tonight so we will see how the night goes. But looking forward to moving forward with our recovery journey tomorrow

Comments

  1. John FisherNovember 20, 2022 at 11:47 AM

    Hopeful!

    ReplyDelete
    Replies
    1. SarahNovember 20, 2022 at 3:27 PM

      Thanks grandad! Lovely to receive your comments

      Delete
  2. Linda WadsworthNovember 20, 2022 at 6:10 PM

    I’m so pleased everything is progressing in the right direction. Happy you also got some time out. Today is another day and hopefully it will be positive.

    ReplyDelete

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