Tech makes it easier
TECHNOLOGY has taken such quantum leaps in my lifetime that my wonderment at it all makes me feel like I’m a real old-school person. From no television to black and white big box television and to LED/LCD flat screens; dial-type Bakelite phones to smartphones, and of course, countless other gadgets and gizmos we take for granted today.
It doesn’t seem like it was so long ago when the fax machine was a thing of luxury that only offices had and could afford. Having a fax machine at home seemed like a luxury few people considered.
When doing research at libraries, microfiches and microfilms were the best and most comprehensive files. These are things our children and those born after 1990 would only know of if we talked about them or if they’d read about them somewhere, most likely on the Internet.
Looking back, I remember all too well struggling to find information on anything — from research during university days to when I had to learn of my son’s illness; communicating with people halfway across the world and depending on immediate responses.
We devoured books, newspapers and journals. The fastest response from anyone overseas was of course a phone call away, but it cost a small fortune if you did it too often. It was the same with faxes.
When I was told that my firstborn son Omar qualified for a radical brain surgery that could stop his countless intractable seizures and possibly save his life, we had to make many immediate decisions. We had to go to Los Angeles as soon as we could. Making arrangements through phone and fax was stressful, to say the least, but those were the fastest methods. TESTS GALORE
So many tests had to be done, which were not available in Malaysia then, like telemetry, and brain scans like the PET and SPECT scans. We needed to fly in early to do all the tests to be sure that Omar had a good chance of success with this surgery. The scheduled date for surgery could still be cancelled if Omar’s test results negated his chances for a successful operation and recovery.
Telemetry is an automated communications process, which in Omar’s case, was to see the type and pattern of his seizures physically and how it corresponded with his brain waves simultaneously. They stuck multiple electrodes on his scalp, similar to the EEG (electroencephalography) test, for the entire duration of the test, which was across 24 hours.
PET (positron emission tomography) and SPECT (single photon emission computerised tomography) scans are types of nuclear imaging tests that allow the medical team to analyse the function of some of our internal organs, in this case, Omar’s brain. These scans are so advanced that they use a radioactive substance injected into your body as a tracer and a special camera to show how blood flows to the heart, which areas of the brain are more or less active, and how the organs (that are under investigation) work.
Omar went in and out of the hospital for these various tests. Some were just daycare admissions, while others were for one or two nights because that was how long the tests took. The telemetry, for example, had to be done across 24 hours straight to see if there was a pattern or if the seizures were random. He was exposed to different things to see if they triggered the seizures while awake and asleep.
There were days Omar was sedated, and other days when he needed to be his usual self. While Omar flitted through the hazy days, we had to remain sharp. We had to pay close attention to all the instructions and take notes in a notebook. There were no such things as emails and text messages.
In between the tests and hospitalisations, we kept in touch by using the public phone booths. Those were the days before the handphone was invented. Everyone carried a coin purse for phones and vending machines. You’d be lucky to see a phone booth today.
Finally, when all the results tallied and risks calculated, Omar underwent surgery, scheduled to be an 11-hour operation. However, his surgery time was cut down to seven hours because the surgeon had used the-then pioneering state-of-the-art laser knife, which minimised bleeding and facilitated better healing.
In the 1990s, all this seemed like science fiction to us, right out of books and movies. Wide-eyed with wonder, we embraced these technologies and were ever grateful to have been there in the right place at the right time.
We have heard of many other children with illnesses like Omar’s who couldn’t receive such treatments for so many reasons, mainly because they came for help a bit too late and the child had passed the age of 2 years.
Our experience on this journey put us on a quest to find out more about technological advancements. There’s really so much out there that we can apply into our daily lives to better cope with many situations. For caregivers, there are so many things that could make our lives a little easier too. We just need to find them.