New chapters and big milestones

The next chapter in our medical adventures started on Thursday the 13th of September with an appointment for Jenny with nurse Kate of the endocrine department. I was to be taught how to administer an injection of growth hormone, and to give the first shot under Kate’s expert guidance. Intellectually I didn’t have a problem with any part of the procedure, it’s straight-forward and relatively simple, but actually administering an injection to another person (particularly one I love to bits) was just a little confronting. However it did get easier, and the subsequent injections in the days following were much less fraught.
Growth hormone (GH) is administered in the evening before bed and as I was the one who had been trained, I had to instruct Phil before he could join in the fun. However Thursdays are my nights to head to yoga class, and since training in a hurry and then not supervising the result of said training seemed to both of us a poor idea, we decided to start Alex’s injections on Friday night instead.

Over the years, and particularly because of chemotherapy, Alex’s body has adopted the policy of ‘when in doubt, vomit’. Two days after starting him on GH, that’s exactly what he did. We, of course, rang WCH on Monday to let them know, and they decided that, given he had surgery scheduled on Thursday, to stop the treatment, let him get through the surgery and recover, then start again on a lower dose. The current theory is that his body was just adjusting to something new and went with the tried and true response, so resuming with a lower dose for a week will allow him to adjust more gradually to the hormone and – fingers crossed – lower the possibility of the traditional response.

On Thursday the 20th we headed in to WCH for part one of the cochlea implant surgeries. I managed to stuff everything needed for a one night stay into a backpack and we set off bright and early for DOSA. Driving along Kermode street past the hospital and Alex remarked on the snacks he would have post surgery. It was at that point I realised I had left the bag containing said snacks in the fridge at home.

I rang Phil in a mild state of panic – those snacks are part of Alex’s post surgery routine, and Alex is a boy who takes his routines VERY seriously! Disaster was looming, but Pete aka Grandpa, stepped in to save the day, dropping by the hospital to deliver the all important snacks.

Alex was the only child on the list, I’m not sure but I think his surgeon, the inestimable Dr Sonja, had added an extra surgery day to her schedule, just for him. So after the usual paperwork in DOSA we headed off to theatre, by 9.30 I had donned the outrageously fashionable gown and cap that only the most stylish of people who want admittance to a surgical theatre get to wear, and by 9.45 we had all sung the rainbow song, with a special guest artist – Dr Rowan came by specially just to see Alex and sing the rainbow song.

One of the main concerns with these surgeries is Alex’s ability to heal. Irradiated tissue is in general slower to heal, and with this in mind Dr Sonja and her team went very delicately about their work, taking extra care to try an minimise the trauma to Alex’s ear, and ended up spending 3 hours or so operating where they would usually only take 2.
At 1pm I got called into recovery to discover a very sleepy but chilled out little man. They had given him morphine at the end of the procedure and it engendered one of the most relaxed wake ups from anaesthesia that I’ve ever witnessed. He came out of the anaesthesia and very politely asked for his headband, when he encountered the bandage on his head he did try to remove it, however when we said no and stopped him he just sighed and stopped pulling at it. Normally he’d dig his heels in and we’d have a grumpy fight on our hands while we physically stopped him taking it off for 10 minutes, so it was a very odd experience to say the least.
The downside of the morphine was that it made him very very sleepy for the next 4 hours or so until it wore off, and while he was sleepy and not moving his O2 sats – the saturation of oxygen in his blood – were quite low, dropping to the high 80’s and low 90’s. The nurses set up a mask for him and while he kept it on or near his face, having the O2 wafting did bring up his levels, but as soon as he moved it away they dropped again. As the morphine wore off his levels rose gradually, but he was monitored fairly closely overnight, and fortunately they rose high enough that we were allowed to go home the next day.

Dr Sonja had come to speak with me while Alex was still in recovery, she said the surgery had gone well, there had been quite a lot of skin in his ear canal which is unusual, so she’s planning to keep a close eye on his left ear in the future.
The operation removed 2 of the 3 bones, the tattered remnants of his eardrum and quite a lot of “gunk”. Dr Sonja told me that the middle bone of the 3 had actually started to die (something I wasn’t aware was even a possibility!) but seeing the look of horror on my face hastened to assure me that in this particular case it was actually a good thing. Separating the second and third bones can sometimes cause damage to the third bone which is left in the ear, but because the second bone was dying it came away from the third bone easily and caused no damage. The best news of all was that the auditory nerve appears to be completely fine, so the implant should work perfectly.
Touch wood!

We made it home on Friday around 11am and Alex promptly went to sleep on the couch, waking at 2.30 when Grandma and Grandpa came to visit so I could collect Jenny from school without having to make Alex come along!

In the days following I had expected Alex to have noticeably less hearing than prior to the surgery, but in fact we have seen very little difference. The BAHA unit (bone anchored hearing aid) is doing a terrific job, Alex recently had an upgrade and now has a more powerful unit attached to a very stylish band which has jungle animals on it.

Alex is due to start his GH treatment on Tuesday, given he’s been exposed to the procedure we are hopeful it will go smoothly. Jenny has been amazing, now she’s used to the routine she is quite calm. We carefully explained every step of what we were doing to her so it wasn’t scary, and she has paid close enough attention that now (under supervision of course!) she is cleaning the surface of the ‘pen’ we use to give the injections and attaching the needles to it.

We see Dr Sonja again on Thursday, and will hopefully get a date for the second surgery then, most likely in a month or so, but we have a more important date in our calendar before then – Alex’s 9th birthday!
We have never forgotten the horror of being told Alex most likely wouldn’t make it to his 4th birthday, so we celebrate each and every birthday with great joy. This year also marks 5 and a half years post diagnosis which is an amazing milestone.