Special K for the very Partied Out Ed

It’s been a busy few days here on the Variety Ward. Our little boy is still in a fair amount of pain but it appears he may have turned the corner. His recent blood tests have indicated that he may be on the improve, though the doctors are suggesting this may take up to 10 days.

After spending most of the last part of last week either in pain or zoned out on Morphine it was decided to introduce some Ketamin into the cocktail mix although I’m not sure how they fit it on the IV pole. This was just in time for a Saturday night in hospital with his Gramps first night’s stay. As the lovely Belinda pointed out, Gramps was the “Variety Ward Virgin”.

Ed is still on the Morphine as this can be called for when required and the Ketamin runs in the background. It appears that the Special K has bought him back into the land of the living a little more and he appears a little more alert, though still in pain when not sleeping.

As I’ve mentioned before they’re waiting for his Neutraphils (the White Blood Cells that fight infection) to return. Yesterday there were cells in the bloods indicating that these would be made and today there were Neutraphils so the doctors are confident that we should see some improvement in his overall health.

After many different scans, x-rays, ultras sounds and tests it appears that the pain he is experiencing is a severe bout of Mucositis which is inflammation and ulcers caused by the Chemo. As my Mum said, if he gets pregnant they’ll blame it on the Chemo. There are many of these ulcers visible in his mouth and around his lips. Apparently these will be coated all the way down his gastrointestinal tract to his poor little bottom causing pain at every bowel and bladder movement. His doctors have acknowledged that Edward appears to be experiencing the very severe end of the spectrum with the side effects of Chemo and are going to perhaps alter slightly the plan for the next Part of the Protocol.

As Ed’s VIP Gold Card continues to earn the miles we too are receiving some more assistance. We now have access to a closed, single private room at the end of the ward near the parents kitchen making things a little easier for the overnight stays and have been appointed a Ward Granny who is available to sit with Ed between 9:00 and 14:00 3 days a weeks- Monday, Wednesday and Friday.
We have also been given permission to call our own Rapid Responses should we feel we need to.

Whilst we wait for Ed to improve it’s been a busy few days. We’ve had Elissa and Minty up from Melbourne which was fantastic and a welcome relief for all. Minty was very impressed with the off switch to Ed’s little air bed as she watched him slowly sink as it deflated.

Today I managed a quick yoga session at the hospital, followed by some songs to the boys from the Music Therapist. The Easter Bunny hopped on by to deliver some Chocolate and a couple of the Parramatta Eels stomped in. I thought Tom was pretty excited to see the Easter Bunny as he started to make rather loud growling noises but his excitement at seeing another couple of big, buff, muscly Eels was by far the best moment of the week for him. I’ll leave it to the other League lovers in my family to discuss that part of Tom’s development with him.

Here’s hoping the next post brings a continued improvement in his bloods and a happier little Ed.


4 thoughts on “Special K for the very Partied Out Ed

  1. That Tom is a star! Well, all 3 are & I’ll be more than happy to hang out with Issy @ the library, Eddie @ the ballet & Tom @ the footy. Hugs to all 3 & of course you & Petie! See you in a few days, I’m already getting psyched up for a couple of nappy changes xx

  2. Thinking of you all, and am pleased to hear that you are getting looked after also at the hospital. Such a brave little soldier this little Ed of yours.
    Love from us all. xxxx
    Mandy and the boys

  3. Three cheers for the ‘Variety Ward Virgin’ – not many blokes have that honour – and to all the family. Love to all.

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