Category Archive: Cassandra

Cass’ MRI Scan At HKL On 30 December 2014

On 30 Dec 2014, Cass went for an MRI scan of her urinary tract and kidneys.  The scan is to see if there are any hidden abnormalities in her kidneys.  We know that her right kidney is duplex.  And she had a Grade 3 Kidney Reflux on the right side, which has since been fixed with a surgery when she was 13 months old.  But all the doctors and surgeons that we have been seeing are baffled as to why she is still leaking pee as all the scans that she had done over the past 5 years showed that all is well now.  The urologist whom we are seeing now is suspecting that her left kidney (which is the good one) may have a hidden duplex kidney that cannot be picked up through all the scans.   Cass had gone through two MAG 3 scans, two MCUG scans and countless numbers of ultrasound scans over the past 6 years.

If this MRI scan report fails to show hidden abnormalities in her kidneys and urinary tract, she would have to go for a CT scan with contrast.  This is the scan which I am most reluctant to let Cass go through as it has radiation.   Cass had to go through a CT Scan when she was 13 months old, when she was in the hospital after her Ureteral Reimplantation surgery.  She had a complication from the surgery, where her small intestine was kinked and all the X-rays, Fluoroscopy scan and CT Scan failed to show the kinked intestine.   I am very uncomfortable to have to let Cass  go through another CT Scan, as I am very worried that this will increase her risk of cancer due to radiation.

On the day of the MRI, we were given a ward at the pediatric unit.  It was planned earlier by the Urology Surgeon  that Cass would be sedated  but at the eleventh hour, I had this strong guts feeling that Cass did not need the sedation (via IV).   I had confidence that Cass would breeze through the MRI without a fuss.  I was so right!  So I talked to her doctor on duty that day (a young Chinese doctor in training). She was very understanding and amiable.  She too felt that Cass did not sedation by looking at Cass’ composure and nonchalance over the whole procedure.  She told me that she would still follow me to the MRI unit with a stretcher, oxygen tank and sedation meds just in case Cass needs to be sedated during the MRI.  From the pediatric ward, we had to take an ambulance to the MRI unit. It was my first time on an ambulance and so was Cass!

My sleeping beauty tried hard not to fall asleep while waiting for the 2pm MRI scan but hard as she tried, she succumbed to her weariness and took a 1-hour nap!  Cass woke up at 6am that morning to eat as her fasting would begin at 10am.  I was hoping that she would stay awake and only fall asleep during the MRI but…. sigh….

 

Waiting for the ambulance to arrive to bring us to the MRI unit.  See the stretcher and oxygen tank behind Cass?  That was on stand-by for Cass IF she needed a sedation during the MRI later…

 

I did not manage to snap a pic of Cass during the MRI.  But it looks similar to the picture below.  Her body was strapped and had layers of plastic and sponge on top of her body.  Her hands had to be placed above, next to her head.  A set of headphone was placed on her ears.  I was given a set of headphone too but I did not wear them as the sounds of the machine were bearable to me.

The  loud and annoying noise emitted by the MRI machine did not bother Cass much but the position of her hands did!   Half way through the MRI…

Cass – mummy, can you bring me a tissue? (she said this very calmly)

Me –  for what?

Cass – to wipe away my tears

Me – why are you crying?  Are your hands painful? (She had been complaining that her hands were painful from the position.  She had to lie as still as a log for over an hour).

Cass – yes my hands hurt a lot.  Can I put my hands down?

I  then wiped her tears away with my hands.

The radiologist and doctor heard our conversation from the PA system outside the MRI room and asked Cass if she was OK.  When they found out that her hands hurt, they stopped the MRI and repositioned her hands by placing them next to her body.

 

Finally after an hour in the clamorous tunnel (that’s what Cass called the MRI machine), a vial of contrast (dye) was injected via the IV line on Cass’ hand.  The contrast is to ‘light up’ the kidneys and urinary tract.

I think Cass behaved really well during the MRI procedure.  She was very cooperative by not flinching and fidgeting throughout the MRI procedure.  I don’t think any 6YO can be that cooperative for over an hour in a confined space, in an icy cold room with loud disturbing noises.  I held her hands, stroke her face and hair and talked to her throughout the procedure.  The presence of a child’s mother / father in such a situation helps to calm a child and I think that it is important that a parent is allowed to be in.  I was with Cass in all the scans and surgeries (when the GA was administered) that she went through over the past 6 years.

Cass fasted for exactly 7 hours that day as we had thought that she would be sedated via IV.   The fasting was in vain as she did not need it after all. My brave little soldier!

This is Cass after the MRI, taking a hungry bite while waiting for the ambulance to bring us back to the pediatric ward.

 

 

Back at the pediatric ward, Cass ate again while waiting for the nurse to remove the IV line from her hand.

 

My motherly instinct was again spot on.  Cass did not need any sedation after all and because she was not sedated, we could go home immediately and she did not have to be in the ward to recuperate!

I am so very proud of you my darling Cass. She is truly endowed with Herculean mental and physical strength.  I pray that all will be OK with you.  I pray that you do not need any more surgery or CT scan.  I pray for God’s blessing and a miracle on you again.

 

 

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Joint Consultation With Pediatric Nephrologist and Pediatric Urologist

I consider today my ‘lucky’ day.   Because I did not think that I would be able to speak to the person whom I wanted to speak with.

A good friend of mine has so kindly helped me to obtain a referral letter for Cass to see the top pediatric urologist and pediatric nephrologist at HKL, scheduled for this week.  It will be a joint consultation to see these two specialists.  What I have is only a referral letter from the head of pediatric  surgeon from one of the government hospitals in our country to this pediatric nephrologist in HKL (Hospital KL).  No dates and time were given in writing.  My friend had verbally told me the date and time.  She even came over to my place to pass me the referral letter.  God bless this friend of mine with a heart of gold.

So today, I braved myself for at least half a day to get through to speak to the correct person-in-charge at HKL.  I do not have a very good impression of government departments and general hospitals in our country. I was right.  This HKL is so huge that no one seems to know each other.  After over 20 calls with my cordless phone going dead about four times, over a period of 1.5 hours, I finally managed to speak to the person-in-charge of appointments at the Urology Clinic at HKL.  But she sounded very ‘cincai’ and I have this uneasy feeling that she has not really written down my  name in the appointment book.

Anyway, I will pray to God for his help to get us the appointment to see these two doctors and I pray that the findings on Cass’ bladder issue will be favorable to us.

 

 

 

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Third Medical Opinion

My long-time friend from Ipoh who has connection with top guns in the General Hospital of Kuala Lumpur (GHKL) has so kindly helped me obtain a referral letter for Cass to see the head of Pediatric Urologist and one of the top Pediatric surgeons in GHKL. It will be a joint consultation where both the surgeons will review Cass’ persistent problem with her urinary tract. The appointment will be in February 2014. As much as I am glad that we can seek a third opinion on Cass’ issue, I really do dread having to go through the anxiousness and most of all, to get the diagnosis and treatment options. Ever since Cass was born, I had gone through countless nightmares and jittery moments with her.

My greatest wish right now is for Cass to be 100% healed from her issue by this year. Can this happen dear Lord? Please say YESSS!

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Cassandra’s Third Electromagnetic Acupuncture Session

Cass went for her third electromagnetic acupuncture session yesterday.  Again, I have to say that she has been a very brave girl with high tolerance to pain. Well, I think she definitely has a higher pain threshold than me.  This makes me love her even more – for her bravery and for being such a cooperative girl during the sessions.

I am not sure how effective the electromagnetic acupuncture treatment is to Cass’ bladder issue.  But I have read that electric waves can stimulate the repair of nerves. If her bladder nerves were severely damaged during surgery, it would take a very long time for them to heal.  If she has weak sphincters, it will also take time to heal.  TIME = WAITING.   I am getting impatient and worried, worried of the days ahead of us when she goes to Primary 1.  I hope she will be 100% healed before she goes to primary school in a year’s time.  I have 1 YEAR to help her and I am going all out to find ways and treatments to speed up the healing.  Next, I may also get her Teviron negative ion clothing. With God’s grace and blessings, I hope He will answer our prayers.

Here she is enjoying her fish noodles at Ka Soh restaurant after the acupuncture session…

kar soh

 

 

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Cass’ Urine Leakage Problem – 2nd Opinion Sought

We brought Cass to see a Professor at UMSC (University Malaya Specialist Centre) yesterday for a second opinion on her urine leakage problem.

The Professor did a quick non-invasive test on her to see the extent of the urine leakage. He asked Cass to cough and pressed her abdomen to see if there is any urine leakage. He also checked her rectum to see if there are feces.  Constipation is one of the reasons for urine leakage, caused by the distended intestines putting pressure on the bladder.

After a long Q&A session with him, he advised us to help Cass do some exercises at home to strengthen her pelvic muscles. He opined that Cass either has weak sphincters or an overactive bladder.   If the exercises do not help to show any improvement in her leaking issue after a month, he will then carry out a Urodynamic Test on Cass’ bladder to study the bladder activity. That test is invasive, i.e. a catheter will be inserted into her urethra and rectum respectively and water will be pumped into the bladder.

One of the exercises is shown in the picture below. I’m not sure what this is called but she has to grip something thin with her thighs. This process will strengthen her pelvic muscles and the urinary tract muscles through the ‘tightening’ exercises.

The Professor also recommended swimming (in particular breast stroke) and yoga. I am planning to start Cass on kids’ yoga class next month.

Exercise for cass24 oct

 

I also taught Cass to do Pelvic Floor Exercise and I also jump on the trampoline together with her.

Exercise for cass24 - 3

It is NOT easy to get this rascal to obediently go through these exercises on her own.  She will only do them provided I do them together with her.  This means I will have to squeeze out an hour of my time everyday to do these physio exercises with her four to fives times in a day (15 minutes each time).  As it is now, I am already struggling to complete all my must-do tasks each day, with some tasks not accomplished on most days.  God is indeed testing my patience!  But I will do anything for my baby girl to save her from having to be drugged on a daily basis or be placed on the OT table the fourth time.

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Lots Of Fruits & Veggie To Combat Constipation

Besides feeding Cass with psyllium husk tomorrow, I must make a mental note to give her a handful of organic cherry tomatoes for breakfast tomorrow. And 1 whole kiwi fruit too. Hopefully she will cooperate with me and chomp down her fruits and psyllium husk, else I will have to use the old trick of threatening her with the bottle of enema! I have not used enema on her for a long time now! This girl is terrified of the enema. She will run helter skelter for her dear life and scream blue murder if I go near her with the bottle of liquid, poor girl.

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Psyllium Husk For Cass, Once Again

Cass is still very much a constipated child.  Her constipation was far worse off before she was trained to poo in the throne.  It was through a few very painful and traumatic experiences that she finally cooperated and ditched pooing in her diaper for the throne.  Though I feed her with fruits, veggie and lots of water everyday, she still suffers from constipation occasionally.  She hasn’t pooed yet today.  I must remember to put a teaspoon of plain psyllium husk into her milk tomorrow morning!  And I must give her more than 1 serving of fruits tomorrow.

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Weak Bladder

It has been 3.5 years since Cass underwent a Uretheral Reimplantation surgery and her bladder is still ‘weak’. So says the surgeon.  She still has to wear diapers to school and she knows how to change her diapers 1-2 times when she is in school. I put a few pieces of pull-up diapers in her school bag.  Back home, she either wears a pad or when I have too much work to do and unable to bring her to pee every hour, I will let her wear a diaper.  The surgeon says that normally by 6 years old, her weak bladder should strengthen.  He has a patient who had to wear a diaper until he was 8 years old.

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Music To My Ears

I remember so vividly how I longed to hear Cass let out a fart when she was lying listlessly in the pediatric ward at GMC Penang 3 years ago.  As long as she can fart, that will be a sign that her guts are not blocked.  Our room was devoid of music and TV as I was waiting anxiously to hear her fart.  But she did not fart, sadly…. not until her second surgery which took place about 2 weeks after the first surgery.  When she finally farted after the second surgery, that was music to my ears and I hugged and kissed her and thanked the Lord!

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Good Appetite

Cass has a very ravenous appetite.   I am thankful that she loves eating and eats almost everything. I do not have to spoon feed her or coerce her to eat, like I did with Sherilyn when she was at this age (4.5YO).   A person with a good appetite is a sign that she / he is healthy.  Her next post-surgery ultrasound scan will be done in a month’s time and though I am quite confident that her right kidney is growing well, I still have that fear of all the ‘what ifs’.

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