Monday, October 13, 2008

I'm on an emotional roller coaster and its draining me slowly...

Decisions...decisions...this one word that many parents in the world have to use and implement to their children and sometimes wonder if the final decision they made is the best for their children or not....

Pass few weeks have been very emotional to me as Ridhwan's fits is not getting any better....if I had it my way, I am sick and tired of forcing medications after medications down Ridhwan's stomach...yes stomach not throat cause it goes directly into the PEG tube....and I so want him to be fits/epilepsy free...hmm...which parent in my shoe doesn't right...

We even had to postpone our trip back to Ipoh as I got freaked out that he had it at least once a day, so instead of going back on saturday we postpone it on sunday...our paed also increased the dosage and said to monitor him closely...if anything give her a call...and alhamdulillah, he didn't get it in Ipoh! So, I was finally relieved that maybe this medication is working, at last!!

Though, to my dissapointment when we got back to KL...it got worse..exhaustion was one major contribution to the fits too...but despite not going anywhere after that...more milk..more food...more sleep..he had it....and after seeing the paed last wednesday...it got even worse!!

The paed was worried...i could see she was upset about this...heck, aren't we all!! And she actually asked us to ward Ridhwan last week...but i refused...which I don't know if its the best 'decision' we made...so she said, bring him home...increase the dosage, monitor him..and she gives until this friday...sigh....however, whether I like it or not....hubby and I have decided that if there is no significant improvement by tomorrow...to SJMC we go....huwaaa....

Many people are asking why am I still not warding him...how do I explain myself ya...ummm...phobia? freaked out? avoiding other diseases or flu that he may be susceptible to in the ward? minimising his phobia to more tests? more drawing of his blood??

Ya Allah...he is only 3 years old..and when I think back the things he had gone through since 4 days old...which mother would not refuse to let her child be in the ward again...my dear son is such a darling...during all his stay in the hospital last time..he has never complain, never fought back with me or even the paed or the nurses....despite the amount of time they poke him with needles after needles...he could still smile at me and giving out so much love to us...how could i? how could I want to bring him there again when now he has progressed so much....how do I tell him that we may be here...god knows, more than a week??? what combination of medications is the paed goin to use this time when we have tried so many already?? Phenobarbital, Phenytoin, Clonazepam, Lamictal, Vigabatrin, Epilim and now Clobazam with Topamax.....and the tests...EEG...blood test....I know..I know...the main thing is to stop the fits once and for all...but I just don't have the heart to see or allow him to be in that situation again despite agreeing that warding him may be the best solution now...is it?

My biggest fear is him being exposed to other sickness and whatever in the air in the ward cause he has progressed so well..ya Allah, his milestones despite a bit delayed has been the best thing that has happend to me the pass 2 years...his vocalisation...his motor skills development...has been the greatest achievement for me and and especially him so far....and what scares me the most, I have heard too many stories about special children like Ridhwan reverting back to old times, loosing or forgetting whatever skills they may have acquired already...tak mau! tak mau sangat2x....I have worked so hard to ensure his motor skills, fine and gross is as much as possible if not at par with his age group at least not too behind..and his speech progress has been the joy of my life as he endlessly without fail everyday tells me..."Mama...I wuv(love) you..." ..sometimes screaming, " Mamaaaa!! I wuv you!!" ......

BUT...yes the but..I know, fits are bad...and the last things is to prolong it cause god knows how it'll affect his brain...but that is what I'm feeling now...decisions..decisions...all I know, I must doa to Allah more and more and hope for the very best that Ridhwan will be fine again and most of all be Ridhwan's strength and hope as who else makes him smile and laugh but his mama which he says to everyday....I wuv you...


2 comments:

CaKCiBo® said...

reenaz,

my prayers for Ridzwan. He will get thru this, so will you.

Amin

edyan7 said...

kak,

me too... will pray for Ridhwan health and both of you...