Tuesday's with Morrie

I just watched a movie at Hallmark channel on Astro, actually I didn't even finish watching it as I thought enough TV for tonite. Anyway, the movie was entitled 'Tuesday's with Morrie'. I've watched the advert for the movie a few times on Hallmark channel but never really bothered to want to watch it as I thought it would be one of those movies about the relationship between an old man(a teacher) and a young man(his student). But after watching the movie a few minutes, I then realise that this movie had touched my heart and made me cry. I am quite fond of touchy feely movie actually but this one really touched my heart as he talked about fear and death. The one part of the movie that really touched me was the scene when Mitch(the young man) asked Morrie(the teacher@old man) how does he go through each day smilling and being happy...does he not worry or get scared knowing that he is dying(yes, he was dying, he has this condition called Amyotrophic Lateral Sclerosis(ALS or also known as Lou Gehrig's Disease)..) Well..his answer touched my heart instantly as it reminded me of 'my' own fear and 'my' feelings whenever I think about Ridhwan's condition...Morrie's answer was...he said he'd get up in the morning when everyone is still asleep and the feeling of anger, rage, sadness all comes up to him and he just dwell in it and tells himself, what has he ever done to deserve this condition, why is this happening to him...But then, after just immersing himself in those feelings, he'd tell himself...enough feeling sorry and pity for himself, he can't feel sorry for himself the whole time..and so he told himself, enough pitiness for one day...lets get a move on with life...

And you know what..that was what I felt intially when Ridhwan was placed in the ICU only when he was 4 days old....I kept blaming myself for not seeing that he was not well even when we came back..his crying was different, not of wanting milk badly but more oh whinning as if in pain or something...and so the blame myself session takes into place...but Alhamdulillah...even in the condition when you have just delivered, normal delivery..and the after pain of delivery was still there..I just gathered enough courage and strength to push myself to go to the hospital each day to visit Ridhwan in the ICU when there were times I just felt like fainting on the wheelchair(I couldn't and didn't have the strength to walk to the ICU..) and even was shivering endlessly in the ICU ..now I know why they have these tungku hot things and you are told to wear socks.....and yet, I just couldn't not even one day not go and see my wonderful son in the ICU...I just couldn't bring myself to just stay at home and 'get well' as everyone told me to and not go see the face of my son in the ICU....I just couldn't...but I thank Allah for giving me that strength to face each day in my condition as I never regretted to push my body to the limit as Ridhwan remembers..remembers?...yes, he remembers the day we both were looking out the window in the ICU and I told Ridhwan "Look Ridhwan, those are clouds out there...aren't they beautiful..mama loves to look at clouds cause it reminds me how great is Allah work to be able to make such beautiful clouds and its shapes and sizes..and if you really sit still you can actually see them moving...." ...yup, I kept on saying that whenever he opened his eyes while he was lying on the small incubator in the ICU...and to my surprise after we came back home after being in the ICU and being warded for nearly 11 days, totalling 21 days Ridhwan was in the hospital...I told Ridhwan to look up and see the clouds...and he did...he was looking at them and sometimes later he smiled...and till today, he loves looking outside and look to the sky..maybe thinking of the time his mother told him never to stopped worrying or get scared as I was there, even if for a short time everyday...but I will be there and Allah is always there....and maybe because of my presence each day even for a short while, made him have strength and hope to fight whatever pain he was facing...and whenever I came to see him , his heart beat would increase as I slowly talked to him.....

And so, when I saw Morrie crying and talking about how sorry he feels for himself each day in the morning but then he'd spring into life again and live life to the fullest..it reminds me of myself how i've supressed my sadness or feeling of desperation whenever I feel lost as I know and believe that no matter how bad it seems I can never look back but I must march forward and be the best to myself and Ridhwan.....for his sake I have to be strong and show him how much I love, care and have faith in him....Morrie, you reminded me today again that life should be kept simple and sweet and most of all embraced with a happy heart and hope..always hope for the best....I thank my mother for her strength, as I believe, what I am today and how strong I am today is thanks to her as she never stopped loving her children with all her might and kept us her priorities all the time and was even willing to sacrifice a career for our future...and mama, thank you for believing in me even when times I feel that it gets so bleak...you are my strength mama and my hope...and 'I' hope that I too one day will be the 'hope' for Ridhwan to be what he is meant to be, and that is...the best for himself....wallahualam...

Chapter 2: How to feed your child with the g-tube

Sorry for the delay my friends..I wanted to post this blog earlier but was busy spring cleaning our store room filled with MY stuff..hehe..yup, its suppose to be the 'family' store room but ended up being MY store room, anyway, alhamdulillah we have or I have gotten rid of whatever is necessary and now I am ready to move into my new house and move the junk there pulak! hahaha..anyway, this is the continuation of tube feeding with ridhwan....

Initially I have shown to you how a g-button would look like in a child's stomach and the apparatus needed to feed. Today, I shall show you exactly how the tube would be inserted into the button or Bard button here. There's many types of button, somehow Ridhwan's surgeon prefer this Bard button to Mic-Key Button...hehee..yes, i thought at first it was Mickey Mouse button ya? And said to myself, ooh, I'd like that one, could be cute! ....No, its not Mickey mouse or Disney's number one mouse... its Mic-Key, guess the key means something I suppose. Anyway, the button as shown yesterday is where we insert the tube to feed and attached the syringe to it.

I still remember when Ridhwan was in the hospital after the gastrostomy surgery, he was fine the next day after the surgery, though a bit groggy and tired, but he was actually smilling and kept laughing away every few hours. Of course it was nice to see him smile and laugh and yet I thought it was weird as Ridhwan before this does not go on laughing and laughing every few hours and he just had a surgery... Even our paed was surprise and entertained that Ridhwan was jovial the whole day. She, for once smiled more often to Ridhwan and I. Not that she doensn't smile at all or much..but she's been quite serious with us past few month or the whole year or so...probably worrying away about Ridhwan's seizures not improving at that time..as it is, at the time he was warded with pneumonia, he was having infatile spams, and that was one of the most critical seizure a child or adult would not want to have. If you read the facts about infantile spasm, as a mother, you'cd cry at the very thought of every fits your child has during the spams, and the amount of brain cells being damaged because of the spasm... :( but alhamdulillah all those are gone now...

Anyway, where was I? Oh ya, steps in feeding Ridhwan with the g-button..oh what I wanted to tell was, the day after Ridhwan was laughing the whole time...the next day had to be the worse day for me and definitely Ridhwan...he cried...and cried...and screamed..the whole 24 hours....it was a nightmare to me..and so was to the paed, surgeon and especially the nurses...he was sedated to the fullest as it is and he never stopped crying..as I am typing this, I can't help crying a tear thinking that the day had to be the worse day of my life as nobody..i repeat, nobody knew what to do...he was given panadol through suppository, his seizures medication was increased...he was even given pethidine! Imagine that! That medicine is given to mothers who are in need of pain relief during delivery...and yet...he kept on crying and crying...as a mother, it broke my heart each time he cried and cried and he only stopped for the most one hour as he was tired...tired of crying..and then he cried again...sigh...

That whole day even my mother could not go home in peace..and not to mention my hubby too, worrying away what is causing Ridhwan this crying frenzy..as we were very worried that his crying was due to the gastrostomy surgery..even our surgeon had to do another endoscopy to check...alhamdulillah, when he checked it was nothing..but again, accompanying Ridhwan into the surgery theater was agonizing..once again, after sending Ridhwan into the theater and leaving him there..I broke down in tears praying hard that nothing was wrong and whatever scarry story the surgeon told me intially before the endoscopy are just assumptions..mere assumptions...alhamdulillah, the surgeon showed me the endoscopy video and he said it was all fine....ya Allah, Allah only knew the pain and the worry I had to go through at that time...and to top it of, I was starting my new semester that time..it was crucial to me as it was the beginning of the semester and classes were already starting...and in masters classes, they can't wait for you as the lectures are shorter as compared to undergrad students...or in other words compressed...but alhamdulillah, I completed it....i actually completed it! thank you Allah...

So, I thank Allah for giving me strength in time of hardships...and thank you so much to my hubby and especially my parents for believing in me that I could complete my masters and even completed it with flying colours, yup, got my results, its good, to my expectations that is...thank you to my family and my family in-law for praying for me too and especially for praying for Ridhwan...your support have been an inspiration to me..and most all, Ridhwan my love, YOU are my inspiration...

So, off we go to our tube feeding part 2 session ya...

Place the tube into the bard button as shown below..as you can see, there is a clamp there to clamp the tube during feeding or after


Another view of the button, the tube and the clamp...tissue is to prevent the excess milk or water from wetting ridhwan and the bed

The syringe inserted into the tube..this is where the milk and water will be poured into


This is how the water would look inside the syringe..the 60 mL syringe...usually, I would put around 10 mL for 'flushing' proces...yes, teringat toilet kan..hahaa...


Now, the syringe filled with milk...so first pour around 10 ml of water to flush the button, then pour the milk..so selalu 60 mL then tambah another 60 mL..until the required intake

This is how the milk looks like when i goes through the tube to the button...


Nie flushing again, to make sure the milk does not get clogged up in the button..nauzubillah..


The stopper or whatever they call it to ensure no milk get out of the tube during taking out of the tube from the button..handy thing...


Ish ...ish..ridhwan pun nak tolong mama cabutkan tube yea...takpalah Ridhwan, biar mama cabutkan yea...this always scares me as now he knows how to grab the button and nauzubillah dia cabutkan the button, no, don want!..


One contented boy..hehee...

So, here is the 2nd part or final part of tube feeding by Ridhwan's mama...its not easy to feed him sometimes as he tends to get reflux(feeling of wanting to throw up, u know, when u were pregnant and wanted to throw up but nothing comes out) and i know eventhough he doesn't cry, he is in pain, as a tear will come out from his eyes after the reflux :( ...but you are a strong boy my son and I have faith in you....we both shall rise above others!! oops, bunyi macam apa aje lak yea..hehee...

okay, that's all for now...more stories to come...maybe pics of ridhwan's physio and occupational therapy..and maybe speech..so check it out ya!

Introduction to tube feeding..

Puan2x dan tuan2x, hari ini saya akan sediakan bahan2x yang harus digunakan untuk feed anak anda yang ada g-tube atau nama panjangnya gastrostomy tube...hehee..macam ajar masak2x lak yea...

Today I thought of showing everyone what exactly is a g-tube for short or a gastrostomy tube is...Ridhwan had undergone a gastrostomy tube on 5th July this year and alhamdulillah thanks to the tube, Ridhwan's weight at last is at par with his height and the best news of all is his fits/seizures are finally gone..yes gone for good...gone are the days that I keep worrying when he'd wake up from his sleep with eyes flickering and hands twitching...yes, do watch out for these my friends if your toddler may show signs like these when he is more than 6 months, no, babies after 6 months should show no twitching behaviour anymore as their system should be stable by that age.

Anyway, I've taken images of feeding ridhwan through the tube. And decided to explain a bit how I've been feeding Ridhwan through this tube since July. Initally it was painful, not to Ridhwan that is but to me as it hurst to put a tube through his stomach and also wondering how long is this going to go on, feeding my son through the tube and straight to the stomach. However, after awhile, I get use to it and even the nurses were amaze with my skill when Ridhwan had to go to day surgery to to cotorization or getting rid of his granulation tissues around his g-tube. Yes, such bombastic words ya..hehe..trust me, after awhile, when you're a mother to a cerebral palsy child with a g-tube, you tend to memorize by heart all these medical terms and meaning. Even when you visit GPs, they will be amaze with your knowledge...heck, I have too, who else is going to know about my son's condition but myself right?

And so, our lessons starts, what is this gastrostomy tube all about?

GASTROSTOMY TUBES
Gastrostomy tubes are feeding tubes placed through the abdomen into the stomach. Gastrostomy tubes are used to give children formula, liquids, and medicines. These tubes are placed by a Pediatric Gastroenterologist or by a Pediatric Surgeon. A gastrostomy tube is placed one of two ways, 1) percutaneously (this is called a PEG) and 2) surgically.

PERCUTANEOUS (PEG) TUBES
A PEG Tube, or Percutaneous Endoscopic Gastrostomy tube, is placed by a Pediatric Gastroenterologist in the operating room. The PEG tube is inserted using a telescopic instrument, called an endoscope. The endoscope is a small tube with a light and camera on the end that lets the Gastroenterologist see into the esophagus (food tube) and stomach. The endoscope allows the doctor to choose the best location in the stomach to place the PEG tube. Once the location is chosen, a small opening is made on the outside of abdomen into the stomach. After the opening is made, the top part of the PEG tube is pulled up out of the stomach through this opening. The top of the tube rests on the skin and the bottom part of the PEG, which is shaped like bulb, remains inside the stomach. This bulb shape anchors the tube in the stomach and prevents it from coming out.

After the PEG tube is placed your child will be admitted to the hospital for observation and care. The hospital stay is usually three days. Prior to the procedure, an IV (intravenous line) will be placed in the operating room. This will be used to give fluids, antibiotics and pain medication, for one to two days, as your child is recovering. Feedings will be started through the PEG tube within one or two days.

PEG tube

Who needs a gastrostomy?

Children require gastrostomy feeding tubes for a variety of reasons. The primary indication for gastrostomy is the child's inability to take adequate nutrition or liquids by mouth for growth and development. The reasons why the child is unable to take proper nutrition can be developmental, mechanical, or secondary to other health problems.

A small, flexible, hollow tube (catheter) with a balloon or flared tip is inserted into the stomach. The stomach is stitched closed around the tube and the incision is closed.

So, there you have it, a little summary of g-tube and who needs them. The above picture shows how the tube really looks like in the stomach. Yes, my dear friends, this is what Ridhwan has in his stomach, and now that he's learning to grab things slowly, I am so afraid that he may pull it out of his stomach cause many times he has tried to pull it lightly...nauzubillah nya....so, this is how the milk will go directly in his stomach as he does not want to drink milk in his mouth like other normal children should...

Ridhwan getting ready for feeding..tembamnya anak mama nie...hehee

The g-button in ridhwan's stomach..its purple in colour as I had to put gentian violet(pronounced like "gen" in "gentoo" not gentian as in "gen" in "genting" in malay, ridhwan paed laughed at me when i pronounced it as in gentian..cet sabor aje") to prevent the granulation tissue from growing more. Oh, the straight cut scar in the middle of ridhwan's abdomen is the surgery for fundoplication of his ..umm..darn, was it esofagus or intestine..one of it lah, will get back to that later....hehee...ridhwan's paed said that ridhwan's scar will not heal fast and tends to look like that, tertimbul, so if ridhwan needs to be operated(nauzubillah) , we need to tell them that he scars this way to the surgeon or whomever related.

next, we have one bottle of milk..usually around 6 ounces or 5

Air masak is also a must for the tube feeding

next, the kidney pan to put the tubes and sryinge after use

then, of course one of the most important apparatus in feeding is the syringe, the 60 ml syringe by terumo..good brand


then last but not least is the tube, there are 3 different types of tube..can't remember what's the name if this one, but each has its function, like decompression, feeding for liquid only and feeing for solids, well not really solid, like fine cereal with milk that is


oh, i forgot, and a box of tissues, yes, it can get quite wet and messy sometimes...

Okay, time to nite2x now and also ridhwan's feeding time, yup, through the button and tube. Will continue more soon...

At last its all over!!!

Assalamualaikum my frens...i have finally finished my masters!! yahoo..i still can't believe it, that i have gone through these 2 years...which could have been 1 and 1/2 years...after all the pain and crying and exhaustion a mother to a special needs child had to go through...its finally done...its all over...

though, i'm not really looking forward to my results this sem...ya Allah, please let me lepas sume yea..but all in all..i'm glad its done for! and right now, i'm just looking forward to graduate next year in april, Insya-Allah, wear nice clothes and shoes for the convo! hahahaa...tu aje pun tengah fikir nie..

and now...drum roll please.....its all about Ridhwan! yes, ladies and gentlemen, now that I have all the time that I want to myself, the time goes to my young hero, my son, Ridhwan..

had a few series of follow up check-up with the paed, surgeon and rehab doctor last few weeks ...and its all about ridhwan and what am I going to do! Yup, my days to come is solely for ridhwan and his development. Ridhwan alhamdulillh is now 17 months old..when I think back, he has gone through a lot, and I owe to him my time, my effort and my love to ensure that he starts to sit on his own, walk and most importantly, eat and suck a bottle like a normal child should be...

many relatives and friends came by during the raya nie..and many knew about ridhwan's condition and yet many too did not know..but those who knew, I thank them for their concerns and help especailly suggesting whom to meet and what to do..their advice and help have been such a relief and a big help to me..thanks to you all....

It also made me think that now, its not about me anymore, but about Ridhwan as its doesn't matter if I get first class for my masters and do well last sem IF ridhwan is still not able to eat normally and walk like any other toddler his age...that right now, is so much more important...

So, as of last week, my days are packed..everyday it would be Shichida flash cards time, and all the other right brain activities I can play with him...then there would be the Occupational Therapy with Aziah every friday...I always enjoy that session cause I have someone to share my worries, hope and future with...and now we have a fortnight speech therapy session with Aini and weekly physiotherapy session with Sarjit.

I have yet to meet Sarjit, but from my rehab dr. or ridhwan's rehab dr. recommendation, she should be able to help Ridhwan...insya-Allah.....Aini, I've met her a few times already, so it should be nice to see her again after quite a long time..yup, last time I met her was when ridhwan was in the hospital for pneumonia and the gastrostomy surgery...

It is also now, I can equip myself with more knowledge about Ridhwan's condition and also maybe do some been put on hold old hobbies of mine..but whatever it is, Ridhwan would still be number one priority....so, wish me luck, its not going to be easy..its all hard work too just like my masters but its worth every time, money and effort cause its for my young hero...ya Allah, may you guide me to the right path and give me strength in times of hardship or sadness...wallahualam....