Back Home on the Variety Ward

After almost a week our little guy was transferred this afternoon out of ICU and back to his home stomping ground on the Variety Ward. I missed the homecoming fan fare as I was off transferring the tiny brother out of the hospital Creche and to his Grandmother Mops Bridge Game at Pymble Golf Club, but more on that in a minute.


In true Edward style, once he had settled into his room and the attention starting to wane he spiked another temperature, which is enough to earn at least another 48 hours on IV antibiotics in hospital. Had this not occurred there was talk of one night’s observation on the ward and a possible discharge the following day.


Meanwhile, over at the Golf Club the ever charming and so very well behaved brother was lapping up attention given by the doting Bridge Ladies admiring his baby blue eyes and charm. I’ve actually never seen him so quiet or even still……we may have a golfer in our midst. Be great if he went Pro and was able to pay us back for all of the chaos and havoc he’s created thus far.


Back at the hospital, there was still no viral or bacterial source of infection found for the cause of last week’s episode in ICU and I dare say it won’t be the last visit we have there. Despite most of his numbers in terms of oxygen saturation and heart rate being stable our little guy is still pretty exhausted and spends a great deal of time sleeping. There are however moments of our cheeky little guy when he is awake. Perhaps he’s just recovering from a busy Sunday craft day with the lovely Gail.


I have to admit that last week would be up there with one of the more difficult ones we’ve had on the journey thus far. A first time visit to ICU, discussions with new Doctors regarding palliative care plans and a fast deterioration of his lungs is all enough to suggest that we may have perhaps turned a corner, but who can tell how long that road ahead will be. To be honest, it’s the same for everybody only this guy was born with some warning signals.


I can tell you after spending two busy and very emotional days in ICU last week I was almost euphoric to return home to the tantrum throwing 1 yr old, Year 1 homework, a supermarket shop, cooking, cut lunches and 3 loads of washing- so nice to have a dose of “domestic bliss”. Trust me, next time you get a little frazzled over dirty socks on the floor, skiddies in the loo or packing the toy box away for 5th time in a day, take a moment think of those parents and kids who have spent the day in PICU. It suddenly shouldn’t seem that bad after all. I’m thinking of running workshops for those caught up and sweating the small stuff- 3 hours in PICU is certainly enough to put it all in perspective.


The week ended on a better note with a visit from his Oncology Doctor to confirm that there was going to be no change to the treatment plan for his ALL and that despite the talk from the PICU Doctors there was really no need for Palliative Care plans. I was also in contact with a parent of a 4yr old with NPC in the States who went through a very similar episode 2 years ago with their son. He was treated with just one dose of IV Cyclodextrin with much success. This guy had been on the Cyclodextrin trial but had been on hold for 6 months and was given just one dose which was enough to get him out of ICU in a day, hospital the following week and is currently using Cyclo regularly. Unfortunately this drug is not available in Australia and previously I have had some preliminary discussions with the relevant doctors about possibly using it. Last week I shared this information as a possible treatment for this acute episode and was able to pass on the contact details of the Doctors involved in the use of this drug in the States. We are in discussions regarding it’s relevance and effectiveness for Edward, but a trip to ICU might have just been enough to get things moving on with a little more haste.


I have to admit that whilst I wish our little Ed didn’t have to go through any of this there are certain aspects of my life that have never been better in terms of relationships; physical, mental and emotional health and the clarity gleaned. I have one person to thank for that, and that’s our little Ed and I suspect that there are others reading this that have a learnt a thing or two from such a special little guy.


I’m off to get Tom on the putter, until next time stay calm and think of those in PICU.


6 thoughts on “Back Home on the Variety Ward

  1. You bet our delightful little man Ed has taught us a thing or two Al. The roller coaster continues. Beautiful words as always, written with love, care, wit and a splash of humour for good measure. Tom is quite the showman isn’t he. A pro golfer in our midst… another charmer in the family it seems! Ange xo

  2. you are a very strong lady and these post put all our health issues in priority. my prayers are as strong as ever , never give up , lets hope there is a medication out there for the future xoxo Wendy and Phil Lankford xoxo

  3. Thanks for the post Ali, it must have been a horror week. I really appreciate your comments in the 6th paragraph. Ed’s challenges should help all of us to keep things in perspective. Our love and prayers for all of your family. Trevor & Carmen

  4. You are truly inspirational, Ali – a special mother, You write with great clarity and a dose of wit about a situation that many would have great difficulty with. Thank you for sharing with us. Ed, yourself, Pete, and those close to you are in our thoughts and prayers as always.

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