Just another Manic Monday

Feb01
by Jo Tann on February 1, 2018 at 8:00 am
Posted In: Personal

Alex has a habit of having hospital worthy crises on major holidays, but when Christmas, new year and my birthday came and went with no stresses we though he’d broken the habit.
Enter the first day of school.
The morning ran smoothly but as I was collecting Jenny from her first day of school I received a phone call from Alex’s teacher. Alex had tried to climb up on a swivelling stool and had fallen off in the attempt, banging his head on the floor. What warranted the phone call was that when he stopped yelling his speech was slurring. Usually slurred speech means a shunt malfunction – given he’d just hit his head there was a real possibility he’d damaged his shunt. When he got home at 4.15 his speech was still slurred so, given he had a scheduled MRI the next day, I called the hospital since I wasn’t sure if this would mean he couldn’t have the anaesthesia. I spoke the the neurosurgery registrar Alyssa who said to monitor him, if the speech hadn’t improved or he had any nausea or vomiting then to bring him into ED, otherwise they would check him in DOSA the next morning.
His speech if anything worsened by dinnertime and he refused any food, saying he felt sick. So pausing briefly to pack a bag – a pro tip for you here, always pack for an overnight visit when heading into the emergency department and remember a phone charger! – Alex and I headed to the WCH. The wonderful wonderful folks at the little heroes foundation had a carpark set aside for us, which was one less stress, and we presented at ED at around 8pm

Alex, as is his wont, completely charmed all the nurses in ED, and Dr Sarah and Nurse Alice who were looking after us were no exception 🙂 After checking him out x-rays of his shut were ordered and we went to imaging just on 10pm. Radiologist Helen was lovely and despite being really tired Alex had his ‘special pictures’ taken. Back in ED blood tests were required and a canula inserted – terrific fun when Alex was tired and grumpy. He didn’t want to have a bar of it, got himself so worked up he was a little bit sick, so I channelled my inner Skye (Alex’s school teacher who is awesome and doesn’t take any mucking around from him!) gave him a little pep talk and the nurses got the job done.

We were then settled in the temporary ward just off ED. Alex went to sleep and I waited for the x-ray results. The neurosurgery registrar Dr Gareth came in around 11.30 and told me the shunt looked fine, so what Alex probably had was a concussion. Given his history it was likely that the symptoms were more obvious, and the symptoms of concussion were pretty much the same as a shunt misfire.
He gave us the option of either going home or being admitted, given it was 11.30, if we went home Alex would have to be woken up (never a good thing!) have the canula removed, then we’d have to walk back to the car, drive home, get in and unpack then be up again at 5.30 to drive back in for the MRI. So I elected to stay! The only downside for me was that there wasn’t any room on the ward for us until 1am, so I couldn’t settle down and go to sleep. We got the call a spot was ready but unfortunately we had to wake Alex to transport him since he had to change beds. It took a while to settle him back down, then I made my bed and fell into it, until 3am when the nurse woke me to wake Alex calmly so we could do obs without waking the rest of the ward, then again at 5am and then at 7.30.
On the plus side though, it’s much easier to wait for an MRI on the ward than it is in DOSA and we got to sleep until 7.30 instead of 5.30!

We smelt the colours, sang the song and 90 minutes later Alex was back on the ward feeling grumpy. It wasn’t the worst wake up ever, he was quite grumpy and cross but only for 10 minutes, then asked for a cuddle and all was well.
Alex is usually a bit emotionally fragile after anaesthesia so the reset of his shunt was tricky since it took Dr Chris 4 tries to get it to work – the machine has to be in the *exact* right spot and Alex wasn’t a fan of the gel that had to go on his head to make the connection.

THEN we had to get the canula and the tape holding it in place removed, and THEN I had to take Alex downstairs to get his two last immunisation shots!

Alex didn’t like the numbing spray Dr Ian used and he let everyone know it! LOUDLY! and <spoiler alert> he didn’t like the needles either!
These shots, however, have brought Alex up to date with his immunisations for the first time since he started chemo at age 3.

Finally we were all done and headed home – we arrived just as Phil and Jenny were arriving home from her second day of school.

Jenny had a ball on her first day btw 🙂

└ Tags: , ,
Comments Off on Just another Manic Monday

Nothing to be sanguine about

Oct04
by Jo Tann on October 4, 2017 at 7:45 am
Posted In: Personal

On the 20th of September Alex had a neurosurgery checkup. Because he’d been admitted for odd episodes a while back he had been scheduled a checkup appointment six weeks or so post discharge, so we dropped Jenny off to Grandma so she could still get to her ballet class (thanks Fran!) and Alex and I headed in. Luckily, though I didn’t know it at the time, I had parked in a regular 2 hour park and put Alex’s disabled pass up, which meant I had a four hour park.

We got to the neurosurgery clinic space and it was jam packed. This was unusual, every other appointment we have had with neurosurgery has been on time and fairly in and out. I know people don’t like waiting, though it’s generally expected to some degree when you have a doctor’s appointment, but in this particular case I was more than happy to. It turned out that the clinic was running late due to two of the four doctors meant to be there having been called into emergency surgery.
We have been the emergency surgery. Given the choice, I’d most certainly rather be waiting 2 extra hours for a checkup.

Of course sitting there for a few hours I’d started chatting with some of the other parents, and when I needed to quickly visit the toilet 20 meters away I was happy and confident that Alex would be fine, and that there were other parents and nursing staff there to keep an eye on him. He was curled up, lying across two chairs with blankie and seemed perfectly fine. I told him where I was going and how long I would be and he was fine with it. However, in the literally 2 minutes I was gone he sat up, announced to the world he was feeling sick and started in on one of his episodes! It followed the same pattern as all the others, although this one was a very mild version, he felt sick, lost his balance, slurred his speech, didn’t vomit, felt fine again, and then had a 10 minute nap.
It was, in a way, kind of handy that he’d done this in the waiting room so the nursing staff could see and report back to the doctor.

When we did get in to see the doctor she went through all of his recent scans, he’d had pretty much everything during his admission – CT, MRI, two lots of x-rays, and a subsequent EEG, and all the results were normal.
The only thing which was out of the ordinary was a marker in his recent blood tests. As of June a marker called C reactive protein, which is usually point something or at most 1 micro grams per litre, was measured at 56 and subsequent tests showed it rising past 90. Unfortunately this isn’t a marker which gives you a diagnosis, as in, if x is raised then it’s y problem – it merely shows that something is amiss, without really giving a huge insight into what that something is.
The doctor we spoke to did say there was the possibility that the raised level was linked to an immune response of some kind, which would fit it well with our own personal theory that these episodes only seem to occur when Alex is unwell, and the timing of the raised protein level coincides with the onset of these episodes.
We both agreed that another blood test would seem to be in order, so after we finished with the doctor we headed upstairs to IMVS for a finger prick test. Alex was very brave and picked up a new word – phlebotomist – after asking if the lovely man taking his blood was a nurse or a doctor.
A quick stop in the cafe to get his reward (a chocolate frog) we headed back to the car with about 4 minutes to spare on our park!
We are waiting on the results now, and are not really sure if they will clarify anything but <touch wood> Alex has remained healthy and episode free ever since!

 

 

└ Tags: , , ,
1 Comment

EEG

Aug21
by Jo Tann on August 21, 2017 at 11:57 am
Posted In: Personal

 

The Friday after the MRI Alex was given the all clear to come home. We had a referral in the works for Neurology and were told we would be informed of our appointment time very shortly. We kept an eye on him obviously, but no more episodes occurred and the gastro symptoms went as well. A week or so later we had a letter in the post telling us Alex had an appointment for an EEG on August 14th.

Phil went in a little late to work and dropped Jenny to kindy and I took Alex off to the WCH. We hadn’t a long wait once we checked in at the Neurology clinic and were soon called by a very nice doctor – Dr Alex :). The process of getting an EEG isn’t the worst thing we have ever had to put Alex through, but since it involved someone touching his head I was expecting some resistance from him.

First Dr Alex had to draw marks on Alex’s head with a special pencil to mark out the placement of the electrodes, unfortunately this meant we had to remove Alex’s hearing aid headband, so communication got just that bit harder. Alex was pretty good through this bit – mainly because the pencil was in his favourite colour – red!
Then Dr Alex placed the electrodes. The end which goes on your head is cone shaped with a hole at the top, about half the size of your little fingernail, and to attach it to your head the little bowl is filled with industrial strength hair wax and then pressed very firmly to your head until a little bit of wax pokes out of the top.
It took a great deal of fast talking and some distractions in the form of adding up puzzles to stop Alex from pulling them off as soon as they were placed! Once they were all on he was quite calm about the whole thing however, and we settled down to read a braille book I had brought with us.
The test itself only lasted around 20 minutes and Alex was then able to help pull the electrodes off, the hair wax didn’t come out easily so we ended up getting the worst of it off and deciding to leave the rest for bathtime! After that it was off to the cafe for some milk and a chocolate frog, and then back home.

We weren’t given a time for a follow up appointment to review the results, again, we would be sent a letter, but the results would be in the system in a few days, so at Alex’s next oncology review on the 21st, the doctor seeing us would be able to access them and let us know.

This proved to be a fortuitous arrangement as about a week later we recieved a letter from the Neurology department which ran as follows.

“Our medical staff have assessed your referral and based on the information provided to us, we are unable to allocate an appointment at this time.
Alexander wil be placed on the Neurology clinic waiting list. The anticipated waiting time due to current demand is likely to be greater than 6 months”

It does you good to laugh doesn’t it 🙂

Still, there have been no more episodes, Alex is back to his usual self and is even putting on some weight! So (touch wood) everything is back to normal, or at least as normal as it gets around here 🙂

└ Tags: , ,
Comments Off on EEG