Its been an extremely busy 8 weeks since my last post with some highs and lows but overall some very special, memorable and amazing times. I think I can say that overall there have been many more highs than lows now that the sleep deprivation seems a distant memory. But trust me there were some very tricky, sleep deprived days in the beginning from this Mumma and times when I would have been more coherent and together having drunk a bottle of wine than trying to operate in such an exhausted state. Allow me to take you back to where I left off as we’ve almost come full circle for the time being.
Back in April, we remained in ICU for another 10 days after his Partial Lung Lavage, which equated to a 3-week stay in total. On the 25th of April (which is ANZAC Day for our northern hemisphere followers), he was discharged home directly from there without any day time oxygen, and like many things with this guy this is not a common practice as in most cases you get downgraded to a ward before setting off for home. Meanwhile, on this morning at around the very same time, in a nursing home over in Miranda my 93 year old, fun loving, WW1 Fighter Pilot grandfather, Sidney Thomson passed peacefully away which was a very suitable and fitting time to for his departure.
Edward managed to stay well and at home for approximately 5 weeks, which is the longest he’s managed to stay away from Club WestMed since his ALL diagnosis in February 2013. As to be expected it was not without the odd sleepless night and adjusting to being a family of 5 again, all under the same roof for extended periods and getting back into the daily grind. I’m yet to actually be able to put my finger on it but when Ed is in hospital this extreme sense of clarity and calmness is instilled in me and when it comes to domestic living and family life at home with the other kids nothing seems to phase me. It’s like you step up a gear (I’m pretty sure that’s called operating on adrenaline and stress) and most things are put in perspective in a calm and ordered manner. But the minute that hospital stress is gone somehow you manage to replace that stress with more boring, mundane things that really don’t and shouldn’t matter. I’m guessing if I’m able to bottle that calmness and clarity without the hospital stay and on sell it I’d stand to make millions- there’s a whole self help industry out there in search of this I know. In the meantime I’ll just try to keep calm, carry on and try not to sweat the small stuff within myself before I take on the world.
The first week at home is always the biggest adjustment for all and this was the same week as Pa’s funeral. It was very special Ed managed to attend and participate in such a beautiful funeral. It was also the week Mum and Dad finally managed to take off on their much deserved and long awaited trip to Europe. Our little guy was also very obliging in managing to stay away from the hospital for the most part of their absence since they offer 3 nights a week overnight stays at Club WestMed.
It took sometime to adjust to the swing of being at home 7days a week caring for all 3 children for the entire time without a break in routine to the hospital. We managed to get into the swing of it and have arranged a carer, the lovely Janine to play with Ed for 3 hours a day, 2 days a week so that I’m to get out by myself to the gym, for a surf, and work on St Leonards Physiotherapy affairs. It was during this time that the commercial suite next door to the current St Leonards Physio was settled, expansion renovations completed in preparation for an additional 2 more physiotherapists to commence later this month so things have been very busy to say the least on that front.
The week after we arrived home little Tom had croup and I was prepared that one whiff of that bug for our little guy was more than enough to land him back in ICU in hours but somehow he managed to fight off. Another runny nose came and went from Tom and Ed managed to soldier through it supported by some home oxygen for a few days. Things were good, he was in great spirits and we were busy filling our lives with some fun “normal” family stuff of visits to the beach, park, family restaurants and dinners out. Our little guy even managed to make a guest appearance for at the movie night and draw the winning raffle ticket for the Magnum of Veuve Cliquot- congrats Glynnis. Pete and I also had a beautiful evening at my cousin Brad and Katrina’s wedding- things were returning to some sense of normality for the time being.
About 2 weeks ago, we went to the Oncology day clinic to have another infusion of bisphosphonates to help his bone weakness. These infusions seem to be having a positive effect, as he is no longer on any form of pain relief, which is great to see. He doesn’t seem to be in any pain and is very keen for hugs and cuddles which is lovely. One of the side effects of these infusions is a temperature and so it was decided they would take a blood culture (sample) in case he should spike a temperature within the next 24 hours and we would know if it was just a side effect if the infusion or a true source of infection.
The following evening, having putting him to bed in cheeky and fine spirits and just poured another glass of wine to sit down and catch up on an episode of “Breaking Bad” (yes I know how behind we are but hey we’ve been in a media bubble for 2 years) the phone rang to say that Edward had tested positive to an infection in his Central line and we needed to bring him straight in for IV antibiotics that evening. I managed to convince them that since he was so well and without any fever that it would be better for all if I bought him back in the morning. Initially they were unsure as to whether it was a true infection as they’d grown some Staphylococcus bacteria or whether the blood sample was contaminated but either way they needed to treat him on IV antibiotics to be sure. It was a very frustrating situation as he was in great spirits and spent 6 very healthy and well days in hospital bored and wanting to get out and be home. It was when he started throwing pencils at the wall out of boredom that I realised how frustratingly well he was. At one point I had a virus for 2 days and was way more unwell than my hospital roommate despite his 2 diseases.
In the meantime plans were being made for him to be admitted to hospital to have full Lung Lavage to be conducted on Friday 13th of July. This procedure involves 7-10 hours in theatre cleaning, washing and flushing out his lungs in the hope of washing away the cholesterol build up in his lungs. He will be intubated in ICU for 2-3 days and will more than likely remain there for about a week whilst he recovers. It is hoped that once his lungs recover from this wash he will no longer require oxygen during the day, C-Pap at night and that his lungs will remain well and strong through winter to give him some better quality of life. That’s the plan in theory.
Last weekend our little guy finally succumbed to one of Tom’s snotty noses and he spent the weekend fighting out a good old common head cold. Unfortunately by Monday afternoon he was pretty unwell and he spiked a temperature. And so we spent the Monday night at the end of a long weekend in the Emergency Department, which was absolute bedlam. Fortunately we were relatively fast tracked considering what was going on and were back up on our Variety Ward by midnight.
The common RSV virus was identified and he’s spent this week trying to recover with respiratory distress and fevers. It’s been questionable all week as to whether he would be well enough to tolerate the Lung Lavage procedure but fortunately this morning he woke up well and happy in time to be carted off to theatre at 8:00am this morning to spend the day having his lungs washed. Depending on how he tolerates the wash will determine how long he will be there for and hence how long the recovery will take but either way he’ll be intubated in ICU for a while.
Here’s hoping for lots of positive energy and thoughts for today and I promise to keep you updated with his progress. In the meantime here’s some highlights of our brave and gorgeous little man from the passed 8 weeks. As you can see his hair is growing at a rapid rate and he’s really working on his fro!!