Ed's Daily Progress

Calmer Waters and Happier Days

It’s hard to believe that it’s been almost a month since my last post and what a month it’s been.
I’m very pleased to report overall our little guy’s condition has been more stable and generally speaking he’s in a pretty good state of mind with just the odd average or bad day thrown in the mix. But I’ll rewind to where I last left off.

The investigations into his lungs did not reveal anything too remarkable other than there was no obvious infection or fungus causing the respiratory distress. His lung condition was more chronic than acute and a confirmation that these problems were more likely associated with his NPC. They did however confirm that he had Rhino Virus (again) and that this may just have been enough to push him over and explain the sudden increase in oxygen requirements. I am pleased to report that whilst he is still on oxygen for most of the time, it is much less and at times he is able to have some time off.

Last week he had a milk feed scan to establish if there was any reflux or aspiration that may be causing the daily morning vomit. This came back negative so the daily morning vomit remains a mystery. Perhaps it’s just the maintenance Chemo drugs he’s on that are causing him to feel nauseous.

The day he went down to theatre to have these lung procedures he was in flying spirits, full of fan fare, meeting and greeting all of those he met along the way. I think he was just happy for a change in scenery. Whilst we were waiting to go into theatre there was another girl in the bed next to him who was crying and very distressed about having a colonoscopy. She was around 16 and definitely on the very larger end of the scales almost bursting out of her bed.

fortunately she was too distressed to be able to hear the words of wisdom coming from our one of a kind, pocket sized 3 year old in his giant bed next to her who was literally shouting at her to sit up and stop crying. When he realised he knew the Doctor who was going to perform the procedure and the humour he was creating it only urged him to continue louder with his soothing words of wisdom. I can tell you he was at risk of being KO’d by her in one foul swoop.

As I mentioned previously he has began sleeping with C-Pap at night. When we finally finished prancing around the edges and trying to desensitising him from the mask it actually went on with a minimum of fuss. So much so that after having worn it all weekend, day and night and we were able to establish that he only needed it at night our dedicated little patient was very unkeen to have it removed assuring me that he needed to wear it. Once the guidelines established that the big mask was for night and the little for the day he’s been very dedicated and committed to the cause. It’s hoped that once they get the pressures levels right he may not need oxygen through the day but at the moment he is still requiring small amounts.

In terms of the overall treatment plan he’s currently still on oral maintenance chemo and his Doctor is currently putting together a more individualised and gentler treatment protocol in the hope that it’s enough to eliminate all of the Leukemia cells without him becoming so toxic and therefore hoping to avoid the prolonged hospital stays. We are still waiting to know as to when they are planning to start.

The past 3 weeks have seen him recover from his Rhino virus and continue to become generally stronger, healthier and happier, even sporting a thin layer of hair. It took 2 days and one false start but he was actually discharged from the hospital last Saturday, only to be re admitted on Wednesday.

The not so little brother has been doing it a bit tough at the moment being a bit clingy and extra snuggly. A few weeks ago he was unwell himself and it was the first time I’ve ever had to take him to the Dr’s who suggested it was viral. The following morning he woke with a raging temperature which wouldn’t go down with Panadol and Neurofen. So after having spent Friday night at Club WestMed, Saturday morning at the Dr’s and Sunday morning in ED at Royal North Shore you can imagine my tolerance level when as soon as I walked through the hospital doors all of a sudden he was fine. Fortunately it was a short wait for a script for antibiotics as I chased him around the Emergency Department desperately trying to stop him from terrorising other sick kids and climbing all over the equipment.

Last week, which was the week leading up to the discharge we had some long gate passes during the day and an overnight one on the Thursday evening. We had to return to the hospital on the Friday for his Milk Feed Scan and was aiming for the final discharge. In the afternoon he had a 30 min period when he was quite unwell and his temperature went up to 37.9 (38 is enough to put you in when you’re an Oncology Patient). The Doctors were keen to keep him in overnight to keep an eye on him. As the afternoon went on he bounced back as he often does and I asked if it was possible for another overnight gate pass and a possibility of keeping our bed overnight should we need to return. I realise Club WestMed is no hotel but we have been here for pretty much the entire year. It came back through the nurse that permission was granted to keep the bed overnight. So at 6:00pm on a rainy Friday night I transferred my sleeping prince from the bed to the pram, with his feeding tube and oxygen attached. Proceeded to the car, unloaded about 3 months of “stuff” from his room in order to get the double pram in, reloaded the “stuff” transferred the guy into car, (still sleeping), reconnected the oxygen and feeding pump and drove down 3 levels of the car park only to be called by the Team Leader on The Variety Ward to say that they really want him to stay in the hospital to keep an eye on him. You can imagine how I felt. In the big scheme of things another night in hospital after all of this time was no biggie, it was the thought of moving all of the “stuff” again and another transfer of the sleeping prince that was enough to almost push me over the edge. So I had another alcohol free night at Club WestMed whilst Ed had a wow of time having totally rejuvenated himself with a big afternoon nap. I guess it was his last night in hospital for……well 4 nights at least.

He was in great spirits for the first 3 days and very happy to be at home. I will admit there were moments of adjustment for everybody in the house but this was always going to be expected since it was the first time in over 4 months that all 5 of us has had spent the night under the same to roof. It was also the first weekend of our new doors and windows having been finally installed so it was nice to have the opportunity to enjoy those. The little guy gate crashed a 6-year-old birthday party, enjoyed the fresh air at the beach, proudly watched on at his little brothers swimming lesson, attended his sisters jazz concert rehearsal and even managed a session at Kinder Music.

Last Tuesday we spent the best part of the day at the hospital having a check up and he was a bit flat. On Wednesday morning he woke up quite unwell and I dragged him along to the jazz concert rehearsal of the year as he vomited his way through and sat quite listlessly. By the afternoon he had a temperature and was quite sick so we headed back out through emergency. Fortunately it was a fairly painless experience and we were back up on The Variety Ward by late evening. I did mention a number of times about his running nose and previous RhinoVirus in the hope they would agree we need to be isolated- fortunately they did.

On Thursday they established he has an infection in his Central Line which means he’ll be in for at least 7 days on IV antibiotics from when he tests negative from the bug. They are still trying to establish the exact strain so that they treat it with the correct antibiotics. Once the antibiotics started to kick in he was on pretty good spirits on Thursday and Friday although today he’s more tired, flat and unsettled. Here’s hoping it doesn’t linger too long so we can get back into it at home.
Some pre home coming nutrition
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Final Checks on the discharge medication
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Welcome Home Cupcakes
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Our very own quality controller
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Happy Days at the Beach
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The toothless Dancer

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Ed's Daily Progress

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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