Phil Talks Tech

It’s hard to believe that the last update here was about Alex’s birthday, and now here we are starting a new year. Tempus really does fugit.

We have in the past made mention several times of Alex’s uncanny ability to have medical emergencies/hospital visits on significant dates, the very first one he ever had was January 3rd 2013. We figure he was aiming for my birthday but missed since it was his first attempt ?.
Well, this year we have been given proof that aiming at anniversaries is a skill possessed not only by Alex.
On the 3rd of January 2022, 9 years to the day of Alex’s initial diagnosis, Jenny woke up with a tummy ache.
She was feeling off all day, refunding a bit of dry toast and not wanting to eat anything else, but perking up after some Nurofen. Once it wore off she faded and went for a nap, waking at around 3.30 in significant pain, she was curled up unable to stretch out, and her tummy ache had become a specific point of pain on her lower right side.
Phil and I, being somewhat semi-pro at this by now, exchanged a look and went to pack an overnight bag and we were in the Women’s and Children’s hospital and into an ED room by 6 pm.

Due to current conditions, the first order of business was a covid test for Jenny, then obs, a wee sample to rule out a UTI, and a blob of numbing cream on her elbow to prepare for a cannula. Because the PCR covid test results take time to come back until she’d had a negative result, everyone who entered Jenny’s room had to get fully gowned up in full PPE, and we weren’t allowed to leave the room.

We saw Dr Rachel at 7.50 pm for a quick exam and she decided an ultrasound was in order, and by 8.45 pm the cannula was in and the ultrasound was done. The ultrasound tech left the room saying ‘I think we’ve found what’s wrong but I can’t officially tell you’ which I took to mean Jenny had appendicitis. At 9 pm A large angry appendix was officially confirmed, but because of covid, unless it’s a “right now emergency” the hospital has to wait for a negative covid test before they can take a patient into surgery.

The staff said the tests usually take around 12 hours to come back, so Jenny would be fasted from 2 am with surgery hopefully around 8 am the following morning, provided that she stayed stable. In order to try and maintain said stability Nurse Sophie hooked up tasocin – which is a really really powerful antibiotic – at 10 pm and Dr Cherryl came in at 10.30 pm to run through what would happen next.

After a short rundown on laparoscopic surgery and risks associated with anaesthesia and surgery, I asked about what might have caused this, and the answer was surprising. The most common cause of appendicitis in kids is apparently poo stones – fecaliths to give them their proper name (if you want to get super technical ones which form in the appendix are called appendicoliths). They are similar in nature to kidney stones only they aren’t caused by poor diet or lack of water, they are just a thing that happens. They get bigger over time and can block the entrance to the appendix causing appendicitis. With a diagnosis in place, we were moved from ED to a four-bed bay in Newland ward at 11.45 pm and settled into bed around 12.30 am.

I was woken at 3.30 am and told that we had to be moved into a single enclosed room over on Kate Hill ward. Someone, somewhere, hadn’t been told Jenny’s covid test was still pending and so we were put into the ward. At 3.25 am presumably the same someone had realised there was no negative test on file and so we had to be put into isolation until her covid results come back. At 3.30AM.

Jenny had more tasocin at 5.30 am and at 8.30 am we spoke to the anaesthetist, but we were still waiting for a negative test. We were told that once the test came back then they would find a slot on the emergency list for her. Finally, after the staff called to chase them, at 1.30 pm Jenny’s test came back negative. She was taken to surgery at 2.50 pm and was asleep by 3.30.

I was then told we had to move again! No more cushy single room now they knew she was negative, and back off to a four bed ward I went to wait for Jenny’s return. At 4.15 pm I got a call from Ben the surgeon, everything was all done – textbook smooth. She would have to have one more dose of antibiotics, then home the following morning.

Jenny came back up around 4.30 pm still pretty woozy, but after a bit of a snooze she decided she was hungry – unsurprisingly given the last meal she’d had was dinner two days before. After a pot and a half of jelly, 2 cups of apple juice, a slice of Vegemite toast, 2 cups of milk, a final dose of tasocin and a LOT of ABC kids she fell asleep at 9.30 pm.

We were both up at 6.30 am, and surgeon Ben came around to visit at 7 am. He said everything looked great, he wanted the nurses to change the dressing and then we would be good to go home. Post-surgery he said Jenny needed to take it easy for a week or so then can start getting back to normal – no swimming for a week or so but she could shower. Dressings could be removed after a week, and as all the stitches were internal and dissolvable there was no need to come back in.

So on the 5th of January at 11 am Phil and Alex came and picked us up and we went home until the next time.

The next time was just under two weeks later, the 18th of January, but thankfully not for an emergency – Alex’s scheduled 3 monthly MRI. We were on the morning list – 7 am presentation at DOSA, but when we got there we found the door closed. A notice told us to go around to the recovery side, where you usually end up once your procedure is done.

DOSA has essentially been shut down during the current covid situation, only essential procedures are going ahead, so everyone is put in their own bay while they are waiting, rather than all seated together in the regular waiting room.

Checking in with the nurse we discovered that anyone going through DOSA was supposed to have had a covid test within the last 72 hours. As that memo had somehow missed us, Alex had to have an on the spot RAT test before he could have the scan. We got the test done easily enough – he wasn’t happy, the throat swab made him gag and the nose swab apparently hurt, but it was done and we settled in to wait. One good thing was that since we were in the recovery ward side of DOSA and in a bay there was a TV over the bed! Alex passed a happy few hours listening to ABC kids and we were called down to imaging at 11.15.

Alex had a lovely chat with his old friends Lea and Carolyn in the MRI waiting room and at 11.40 after a rousing rendition of the rainbow song with Dr Rowan I headed off to get some scripts from the endocrine department and to grab some lunch.

9 times out of 10 Alex waking up from anaesthesia is a fairly easy process, he tends to be a bit grouchy for a time, but leave him alone for a bit and he will come back to his usual self after half an hour or so. This wake up was number 10. I got called into recovery, where particularly now, parents are seldom invited.

I could hear Alex yelling from down the corridor, he was not a happy camper!

He refused to put his hearing aids on and was laser-focused on getting the canula out, but he HAD to do it himself. He was actually re-wrapping then unwrapping the bandage on his hand as the nurse who was trying to help had undone it for him. “I want to do it!” was yelled out at top volume more than once. He ended up with the bandage off and then started on the Tegaderm patch which was holding the cannula in place. All attempts at assistance were met with furious yelling and hand swiping, and he did end up pulling out the cannula himself – which the nurse wasn’t quite ready for but caught amazingly well.

I’d been trying to get him to put on his hearing aids but he kept shoving them away, only to two minutes later start shouting “oh no I can’t have my hearing aids!” He did eventually put them on and we headed back to DOSA recovery.
Many cuddles later he started to calm down, and I eventually got out of him what the problem was. Turns out he was upset about smelling the colours being over and he wanted to go back in and do it again.

He soon perked up and came back to his normal self pretty quickly after that, he had milk and all the chocolate treats that I’d brought with me but decided that he wanted to have his lunch at home. Dessert first right?

Nurse Taylor signed us out and Phil and Jenny came to pick us up.

Watching Peppa Pig with Jenny after coming home from his MRI

We got home and all was well, but I got a call that afternoon from an oncology doctor – Dr Rachel – they had seen a shadow on his lungs in the scan and were calling to check to see if he’d had any respiratory issues – which he hadn’t. She said they would do a thorough check of the scan to try and determine what the shadow was. Understandably with the scan only being done that day they didn’t have the results for us, but we had an appointment for Thursday for a checkup and she said they would let us know the findings then.

Phil took Alex in for his Thursday appointments, first for a lucarin injection with Nurse Kate, then an echocardiogram and ECG with David, who said everything was looking good, and then an oncology checkup with Dr Daniel.

The injection was tough to get through, especially as I was on the other end of the phone and not really able to do much, but everything else went smoothly. The shadow on his lungs turned out not to be a cause for concern – his lungs had partially collapsed under the anaesthesia, but apparently, this is normal(!)
We were also given the scan results, in official speak:”sustained reduction in size as compared with January last year, but no significant reduction compared to the last scan”
This essentially means that there’s been no tumour growth since the last scan, but no visible reduction either, so I suspect the next checkup will include a chat about increasing the medication dosage.

I sincerely hope that everyone else’s start to the year was significantly less hospital filled (and will continue to be so!) and wish you all a happy and healthy 2022.