Thursday, April 18, 2013

When F-I-T is not desirable

We always talk about keeping fit and staying healthy. Recently, I had an experience which made f-i-t totally undesirable. And I hope it never happens again.

One fine Tuesday
On this fateful day, while at school having a meeting, I received a phone call which I never expected, never wanted.

'AA had a fit!' said my mother-in-law.

I can't quite describe the shock I felt then, the worry and fear that gripped me. I remember uttering 'oh no!', and bringing my hand to my lips. My reaction got the attention of my team mates, though. AA had a fit about 15 minutes before the call. My helper rushed him to the nearby GP, but halfway there, he recovered, and they returned home. What was perplexing was there was no known trigger. He had no fever, and was playing with his grandmother when it happened, though he was having a cough and had a lot of phlegm.

For the next one hour, while the team mates continued with the meeting, I was making calls to the KKH Ask-A-Nurse hotline and my mother-in-law, trying to get a better picture of the incident, and getting advice on what to do next. Because AA had recovered, the advice as to monitor him and if another incident occurred, he was to be sent to A&E immediately.

Five days later 
Early in the morning, AA was playing with his toy truck. The truck slipped, and he bumped his head on the floor. It wasn't from a big height, but it did hurt a bit, so naturally, AA cried. He got more and more agitated, and then it hit again. He recovered again, and it was off to A&E at Parkway East, near our home. AA was admitted to hospital and tests were done. These included a blood test and a Electroencephalography (EEG) which measures the brain's electric activity. The results were normal, but because there were two attacks, the pediatrician prescribed prescribed medicine for it. I stayed with my baby at the hospital and he was discharged the next day.

By this time, everyone at home was on high alert. No one wanted a third incident. The big question on our minds: what was the trigger? We needed a second opinion, but did not know where to start. Luckily, my sister's friend's parents are doctors, and they were able to recommend a few neurologists, most of them situated at KKH. I tried calling, bit the earliest appointment was in May. Hubby and I made a trip down and managed to get an appointment two weeks later, which is today. In the meantime, we set an operating procedure at home, I put all of AA's medical documents and test results in a file, along with $50. If he should have a relapse and hubby and I are not at home, the helper or my parents-in-law are to immediately give him a medicine through the backside to help him recover, gather the important stuff and send him to A&E at KKH. Then hubby and I would rush down from wherever we are. 

I also wrote an incident report detailing exactly what happened during the two attacks, the duration, how he looked, the medication he was on and so on, so that when we finally see the neurologist, we would have everything down, and we didn't have to worry of forgetting anything.

So, fast forward to today. The last week or so has been nerve wrecking. I've tried calling KKH everyday in the hope of getting an earlier appointment with any neurologist available, but well, that wasn't successful. Everyday I leave home worried. Everyday I would constantly check my phone, hoping and hoping that I will not receive a call from home. Everyday my heart will only be at ease when I get home and see my dear AA happily smiling at me and saying a musical 'haaaiiii'. 

We met the neurologist today, a nice lady. She did a quick assessment and said AA was fine, and his development is on the right track. The worry, of course, are the fits, and what triggered them. There is no family history of epilepsy, so that also seems unlikely. Fever was also not the cause. She also shared with us that for babies of AA's age, they can get into breath-holding fits, during which their lungs reflex involuntarily when they are feeling extremely angry, frustrated or uncomfortable, affecting the breathing pattern. Whatever it is, further investigations needed to be done, and this included another round of blood tests and EEG. We will be seeing the neurologist again next week, so hopefully, everything is ok.

One thing I found out from the doc today: during episodes of fits, NEVER put anything in the mouth. There's the common misconception that something like a cloth should be put in the mouth to prevent the person from biting himself. But the doc said that is not right. Doing that may end up hurting the person who's having a fit. So we've modified our standard operating procedure at home now, and it goes something like this.

1. Prevention is better than reaction. So every time AA gets angry or upset, we would try to distract him by singing, clapping, anything. Even opening the refrigerator comes in handy. The point is, make him relax.

2. If he does get another attack, make sure the area is safe, or bring him to another area.

3. Lie him down on the side and keep his airways clear.

4. Do not put anything in the mouth, as forcing open the mouth may break teeth and cause oral injuries. 

5. Observe and record, being as precise as possible, and noting the duration as well. Make a video recording if possible.

6. After he recovers from the seizure, let him rest.

7. Rush him to A&E.

I knew my babies are my everything, but this episode more than reinforced that. I found myself wishing it was I who was going through the ordeal, not my darling AA. And I would do anything for him to be alright. At the same time, I had to be strong and happy and make sure I don't neglect EV. During the two days that AA was in hospital, I only saw EV for barely an hour, but every time I do, I give her a hug and kiss. She was wonderful too, extremely understanding, and gave AA a big hug when he came home. Such a great sister, I'm so proud of her.

The extended family were so supportive too. The parents-in-law stayed home to look after EV. My mum stayed over at the hospital with me. My brother gave me a virtual hug as he's living in Melbourne, and my sister helped find recommendations for neurologists. They were wonderful, and it made the whole ordeal a little easier to endure.

Did I become stronger? Perhaps I have, in some way. What really hit me is the heartache I felt, and how much sacrifice I am willing to make for my babies. Hubby and me both.

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