Aside from routine check-ups we have managed to avoid the women’s and childrens hospital (aside from a quick visit to welcome a friend’s new arrival, benvenuto Santino!) Alex is day by day visibly coming back to “normal” singing when he gets up, bouncing around the house, playing toys and going to his playground. He still has patches when he asks for quiet time, and curls up on the couch with blankie, but they are getting fewer and fewer.
We managed to get to the slowdown game on the long weekend, it was a long day but a really good one – one of the first family outings in a long time that didn’t involve going to grandma or nanna’s house.
We did have a few bumps in the road recently though. A routine eye and ear check up ended up with me in a bit of a mess when out of the blue, after a half second look in each eye, the optician told me that Alex would never regain his sight. This upset me as you might imagine but it also surprised me since the reasoning for his diagnosis was that when optic nerves repair themselves they go quite pale, Alex’s were a normal shade of pinky red, and it had been 8 months ergo that was it. The surprise was due to the fact that from the start of this nightmare we had been told that his eyes were ok and the problem was in the connection between his eyes and the visual processing areas of his brain, now all of a sudden the optician, not the neurologist, was telling me that there was no hope. What made it worse was that this news came hard on the heels of the audiology department telling me that since the test he had that day had the same results as the previous 3 tests they were fairly confident in saying that Alex has permanent hearing loss and will need a hearing aid.
I went up to see the oncology team after both these appointments to say Hi and oh and incidentally could I borrow a tissue or twenty, and Dr Ram and the other nursing staff who were there were as surprised as I had been to hear of the optician’s diagnosis. Ram checked into it for me and a few days later Phil had a call from the ophthalmologist. It turned out that the optical department wasn’t fully aware of Alex’s situation, they were looking at his eyes and optic nerve and hadn’t factored the potential for a neurological cause. In fairness it should be said that Alex’s patient notes comprise of about 7 very full manila folders and given the number of patients the ophthalmology department see on a daily basis it’s not terribly surprising that they didn’t sit down and read them all.
In any case a new set of tests were organised for Friday the 11th of October – an Electro-retinogram (ERG) and a Visual Evoked Potential (VEP). These tests both involve having electrodes sticky taped to various places on your head and you can imagine how well Alex took to that. He wouldn’t have a bar of it. Never mind getting the electrodes stuck on – he wouldn’t let us even put the gel on his skin that gives the electrodes a better contact. After 20 minutes worth of cajoling, imploring, begging and even attempts at bribery had failed Dr Paul said it wasn’t worth continuing since even if we did manage to keep the electrodes on he wouldn’t get an accurate result as being upset messes up the data readings. The only way to get the tests done was to sedate Alex. The problem with that was he was going on 5 weeks leave as of the end of that day, and that since we would have to come in through DOSA (day of surgery admissions) to have the sedation done it would depend on when they had a free space. He rang DOSA and told us the earliest space was mid to late December.
Then fate/serendipity/luck/random chance, call it what you will, intervened. Walking out through the corridors on our way out we ran into one of the registrars from the oncology ward, she recognised Alex and stopped to say hello, took one look at me and asked what was wrong. We told her, and she asked if we could wait where we were for a minute, she went and spoke to Dr Paul, came back to us and told us that the Michael Rice ward was quiet today and that they could organise the sedation for us right then!
The amazing staff up in MRC shuffled their patient/nurse organisation and freed Carla to come back downstairs with us to give Alex a dose of Midazolam Giving him the drug wasn’t the easiest thing in all the world, but when it kicked in we were able to distract him enough to get (and keep!) the electrodes on his head. Dr Paul ran his tests which involved a very bright LED strobe light flashing in Alex’s eyes. Unfortunately for me since Alex was sitting on my lap it was flashing in my eyes too!
The ERG tested to see if Alex’s retina was responding to light stimulus, generating the electrical signals which the brain then translates into an image.
The VEP tested to see if Alex’s optic nerve carried that visual information to the visual processing part of his brain. We haven’t had an official report with all the long medical words in it, but from what Dr Paul told us the results are essentially that Alex’s retinas are working properly, responding to light stimulus, but that the signals generated by his eyes aren’t getting to the visual processing centres.
So the testing has essentially confirmed what we thought we already knew – Alex’s eyes are fine, the problem is neurological. We have a neurology appointment booked for after his next MRI, I’m not sure if they will be able to tell us any more than what we already know, but we’re hoping so. While it’s hard to not have a definite ‘the problem is exactly here and will take x time to repair itself’ the fact that there is still hope of some sight returning is a lot easier to live with than no hope at all, and we are daily, hourly grateful that Alex is still here with us at all.
Thankyou all once again for the love and support, it really is a big help.
