Tuesday, July 28, 2009

Guilt and Impatience

As a mother, the two emotions that I struggle with almost daily is GUILT and IMPATIENCE. Yes, EVERY single day, I struggle with these emotions.

Patience is certainly not one of my virtues. Now that I am a mother, I struggle with not having this virtue. You need patience to deal with children. Lots and lots of it. An overdose of patience is required.

I certainly need patience in my busy, rushed world. I need it BADLY! Worse still, I see my children turning into the Impatient monster that I am. They are beggining to shout and speak impatiently and go HMMMPRH! or let our a BIG SIGH! with hands on hips and all. I tell them that its very rude to speak that way but secretly, I realise that they learned it from ME!

And then the GUILT starts to creep in. Boy oh boy. Yes, the GUILT. Am I doing too much for them? Am I too controlling? Am I teaching them the right thing? I could go on and on. There is a 101 things to be guilty about and more! As a Stay At Home Mother who is at home with the kids 24 hours 7 days a week it is very hard to distance yourself and give your children the space they need to become independant and confident individuals. It is hard not to do too much for them and be too controlling in your own IMPATIENCE and sometimes you find that you lose it and then you feel GUILTY!

Help! I think I need to loosen up a little bit. Otherwise I will be eaten up by the monsters called IMPATIENCE and GUILT!

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Thursday, July 23, 2009

Unsuccessful MRI- Part 4

I had told my girl that she could have her favourite ice-cream. I had told her that she had to go back to try again with injection this time and I had told her that she might have to miss her school trip.

What have I done to my poor girl?

She does not know why she can't have her favourite ice-cream even though she tried two times and she overheard the man say that the second time was better. She probably taught that the MRI was over.

She has never had a phobia about injections and going to the doctor before but now she keeps on saying "Mummy, I don't want injection. Can you ask the doctor whether I can drink something instead?"

She keeps on worrying about whether she can still go for her school trip. And its all my fault.

Before her second attempt, we tried to get her to fall asleep while waiting for her turn. They let her lie on a bed which didn't look very clean to me. There was an oxygen tank or something on it which was removed and we had to dust the dirt off the bed. I saw some blood stains too. Sigh. She tried but she just couldn't sleep.

The whole experience was just very distressing for our whole family. Hubby had taken leave from his work and we had spent days worrying about it and then we spent 4 hours at the hospital for nothing and now we have even more things to worry about and we don't know when we will have another appointment or how and what are its risks etc.

Anyway, for now I don't want to worry about fixing another appointment just yet. I'll just wait for the hospital to call and probably we'll fix it in 3-4 weeks time when we are not so rushed. We always seem to be rushing around all the time. Its so tiring.

I think our main priority now should be working at getting the girl more sleep and less stress. The same goes for me.

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Wednesday, July 22, 2009

Unsuccessful MRI- Part 3

It was late evening and they were unable to do any intravaneous or other sedation methods without a doctor or medical officer being present so we would have to reschedule another appointment.

In our desperate attempt to avoid another attempt on another day (and our worries about the risks of other deeper forms of sedation or general anaesthesia being used), we persuaded our girl to try again. We said all the things we should not have said.

We told her that she could have her favourite tropicana ice-cream after the procedure. (even though she had a cough!). We pleaded with her to try so that she won't have to come back another day for an INJECTION! I even told her that if she was not successful they might have to reshedule the MRI on the day of her school trip and she would have to miss it. Isn't that just horrible? Yes, it is but we were desperate.

I had felt so anxious all week. I felt anxiety just before we left and she didn't want to take the oral sedative and then she took it and said she wanted to vomit. And to go through more anxiety and worry again seemed unthinkable at the time.

So she tried again but she was restless. Who wouldn't be? She is only 7 after all. Now, the experience of the MRI depends on each individual. You can either find it very uncomfortable and unpleasant or just slightly uncomfortable. You have to be in a dark tunnel for half hour. You have to lay very still and hear very loud sounds.

They allowed me to be in the room with my girl. I saw that the even put a thing that look like a cage over her face and snap it shut. Its not really that bad actually, its just to prevent movement but in my tired mind, I was worried that she'd be scared by it. I peered over the "cage" and showed her my earphones and told her that its ok, I can hear the very same sounds that she can hear and we can talk about it afterwards. They had given me earphones to block off the sound. She was given ear plugs.

However, the second attempt failed too. By now it was so late, the doc had called to ask if he could go home. We were the last to be driven back to the clinic but no one could reschedule another appointment for us. They were all unclear about when and how? By hospital admission and general anaesthesia or how? In the end, we told them to just call us to fix another day because we were just so tired we wanted to go home.

Both the kids were tired and hungry. And on the way home, finally, she fell asleep but I had to wake both the kids up to have dinner after that. I don't know whether to scream or cry.

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Tuesday, July 21, 2009

Unsuccessful MRI - Part 2

The hospital had asked us to give the oral sedative to her one hour before the MRI. Knowing how long we usually have to wait at hospitals, we gave her the sedative just before we left the house.

By the time we arrived at the hospital, she sounded drowsy, spoke with a slur and wanted to be carried. We registered her name. Then we had to wait for an hour for transportation to another building where the MRI is to be carried out. Then we had to wait another hour for our turn.

In the meantime, we saw no one. No one came to explain anything to us or tell us whether we could be with our girl during the MRI. By this time the girl had become restless and agigated.

Finally, we were called in. Fortunately the two men in attendance were patient. They took one look at the girl and shook their heads. It won't work. They said. She's too restless but we will give it a try.

They tried but the girl kept on coughing. She coughs when she is nervous. She kept on coughing and scratching various parts of her body and face conciously.

The men said that is was not working out. The images were too blur. They said we had to come back for another try with deeper sedation. Deeper sedation carries some risk, they explained.

We were worried. I wanted to try again.

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Monday, July 20, 2009

Unsuccessful MRI - Part 1

Ever since the MRI was scheduled over a week ago, I had begun to worry. We were given an oral sedative called chloral hydrate to give to the girl about an hour before the MRI. I worried about a few things mainly about the safety of the sedative as well as whether my girl would be frightened by the procedure.

We were told to give 25ml of the sedative all at once. It seemed like a lot to me so I rang up the pharmacy to double check before giving. We didn't inform the girl about the MRI. We had postponed her piano class which she was looking forward to because she had learned to play her song really well and she "wanted to surprise teacher".

Finally on the day of the MRI, I told her. I tried to make it as lighthearted and casual as possible. I told her that the doctor wanted to take an x-ray picture of her brain. Just like the pictures of mummy's brain that she saw. She was disappointed that she wouldn't have her piano class but she eventually settled down to do her homework without too many questions as would normally be expected from my very inquistive girl.

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Thursday, July 09, 2009

More Tests - MRI

Recently when I saw my doctor, I asked him about my girl. He thinks that she most likely had a fit and he would like to do more test. He says that since the technology is available there is no harm in doing an MRI test for a better diagnosis.

I am worried about her doing the MRI. I am worried she will be very frightened by the experience. I have done the MRI before. Basically, we have to lie down and we will be put in a tunnel like thing with lots of loud sounds coming from within. The "tunnel" is small so its scary for someone with claustrophobia for example. We have to lie very still without moving. It can be scary for a young child.

My girl is often afraid of loud sounds, sounds of the toilet flushing, sounds of the tap running down the drain pipes etc. The doctor has given me a syrup to give her that will cause her to be drowsy but I am still afraid.

I am even more afraid of what the MRI will show. Previously mine didn't show anything but I still anguished about it days before having it worrying that it might show a brain tumour or something. So I won't mention this test to her till the day of the test. My poor little darling.

I hate this. I hate this very much. This feeling of unease. This feeling of fear. This feeling of depression. This unsettling feeling that I have. But I cannot do anything about it. I am helpless to do anything because these things are hard to diagnose. The doctor will not treat her yet since she has only had one or two episodes of fits.

So, I can only wait, wait and hope that she does not get any more seizures. Wait and hope that nothing bad will happen. I cannot do anything about the situation but I suppose I can try to take control of my own feelings about something that I have no control over.

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Wednesday, July 01, 2009

Another EEG test

One night last week, my girl gave me another scare. I was woken up by her moans but she didn't respond when I called out to her. I thought I saw her moving/jerking in bed. When I switched on the lights and tried to wake her I saw that her eyes were open but her left eye was twitching. She looked blank and did not respond.

I called the paed neuro the next day and she advised us to bring her in for another EEG test. My heart was so heavy and filled with fear. It still is. I am very sad, scared and worried.

When I told my girl that she would be missing school because she had to go for another EEG her response was "Why do I have to go and see the brain doctor? I don't have a headache." I explained to her that its just a routine check and the doctor will give her a MC for not attending school. She went "Hurray!" and started prancing around. Such innocence. I smiled at her but my heart was very very heavy. I reminded her that they will attach many wires from her head to the computer and she will be asked to blow into a bag (to simulate hyperventilation) and they were going to ask her to look at flashing lights. She asked whether it was going to be the same girl who will ask her to blow into a bag because she liked the girl.

She is only 7. She is a bright and intelligent child, a good girl. My husband and I were worried that if she had to take medication, it would stiffle her individuality.

We had to keep her sleep deprived for the EEG so we let her go to sleep later and woke her up earlier in the morning. During one part of the EEG she had to go to sleep. This time the EEG was more professional than the one we did 2 months ago. During that EEG test there was no one else allowed in the room with her. Fortunately the technician was a lady, otherwise I would have insisted on being there too. This time there were two technicians, a lady and a man and I was allowed to be in the room.

Just when I was wondering how on earth she was going to fall asleep with 2 technicians and her mom staring at her, and just when they had sent hubby to go and buy sedatives and a syringe, she fell asleep. Later on when I asked her how she did it, she said she counted numbers.

The EEG turned out normal. Another EEG done 2 months ago was normal too but the doctor says that normal does not mean that she is not epileptic. She says that she does not want to label her yet but she thinks there is a 60% chance that she is. She says that if there is another episode than she may consider other tests and even if another EEG turns out normal, she may consider medication.

It feels hard to even write this down but writing is a form of therapy for me to get it out of my chest and think things through more subjectively instead of emotionally. However, I must say that writing does not help this time. I still feel disturbed. I do not feel at peace. I am worried about her especially when we go to bed and when she is away from me at school.

I hope that it was just a nightmare that she was experiencing but the doctor does not seem to think so. I guess a normal EEG is the better outcome for now since there is still some hope. However I am worried because in my case after one seizure in my sleep, the doctor said one seizure does not make you an epileptic. After a second seizure in my sleep, the doctor said its ok not to take medication at this point. And then I had 3 seizures in a day while I was awake and had to be hospitalised. I am worried that the same thing will happen to her. So is a normal EEG and non-medication really the better outcome? I don't know. I really don't know.

When it happened to me, I was scared for a while, but I think I can come to terms with it more easily than if it were to happen to any of my kids. That is very very much harder to handle. Afterall, I have done all the things that I wanted to do when I was young without this burden. I am a housewife now so to me its not so crucial but to a young kid who has a whole life to live and look forward to, a kid will face many more pressures, pressures as well as misunderstanding from the people around them.

If there is anyone whose child has to undergo an EEG, please take not that it is a harmless, non invasive test.

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