HOME is a four letter word

It seems the mere mention of home for our little institutionalised guy and he moves the goals posts again.  Unfortunately Ed’s condition changed almost the moment I hit POST on the last post.  For the past 2 weeks his condition can only be likened to the weather pattern in Melbourne and yes it can literally be four seasons in one day.

He can wake up in the morning tired, flat lethargic and pretty unwell and by lunch time demanding food and firing on all cylinders full of good cheer, humour and demands to all those that dare to enter the room.

He’s had the odd temperature and is quite crackly in the chest but all of his tests have come back negative, even for Coronavirus which means we are currently at risk of being evacuated back down to the Camperdown Ward. As you can see from one of the pics below I’m madly arting and crafting with him, and swiftly adding them to his wall gallery in the hope it may deter them from evicting us from the room. Heres hoping it works.

Last Tuesday evening he had another rapid response as a result of breathing difficulties and is now on a considerable amount of high flow oxygen and still requiring. The Respiratory Team are currently exploring as to whether this is due to an acute infection or something more chronic as a result from his NPC. Next week he’s going to have a Bronchial Lavage (BAL) to see if there is any infection causing these pulmonary difficulties.

He’s also going to have a Barium swallow to try and get to the bottom of the consistent morning vomits he’s had over the past few weeks as he’s not really tolerating much of his PEG feeds. There’s a theory he may have some reflux or aspirating his feed.

They’re also going to try him on a CPap Machine at night in the hope he may not require oxygen during the day. For those that dont know it’s a Constant Positive Airway Pressure machine that assists you to breathe and is used more commonly in people with sleep apnea. It will require the little guy to wear a mask and whilst nasal prongs for oxygen are just tolerated, masks are definitely not so that’s my latest project at the moment- desensitising him to the mask. I’m not really making much headway at the moment even when placed on Elmo or Pooh Bear.
Our little guy forever keeping these doctors on their toes.

NPC or the after-effects of Chemo?? One things for sure, some days the NPC whispers through the trees and you can block it out, other days it bangs loudly on the door and its very difficult to ignore. Either way it’s a great lesson in enjoying the good times, even if they are short.

The ever growing art gallery and insurance policy to stay on The Variety Ward
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Another use for the sick bags

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Another happy Music Therapy session with Miriam
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3 thoughts on “HOME is a four letter word

  1. keep going toopers , one day at a time, god bless ,angel blessings , still prayers everynight for the little man xoxo wendy and phil Lankford xoxo

  2. Addit: I never knew sick bags were so versatile! You could almost snow ski with a sick bag body suit! I think you’re onto something ed !

  3. Than you so much for these updates Ali. They mean so much to us. Our thoughts and wishes are with you and Ed. And also with pete Isabel tom and your incredible families. All our love. The Hewsons.

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