Category: Incontinence in Kids

Dr S, the urologist at HKL whom Cass has been seeing since she was 6 years old has retired. Dr S was the head of the Urology Department @ HKL. I was really disappointed that Dr S who had been following Cass’ case is no longer around and a younger doctor has been assigned to take over.  Nonetheless, in the event a surgery is required after a diagnosis is made, Dr S willl be called back to perform the surgery as Cass’ case is an extremely complicated one and requires the skillful expertise of an experienced surgeon.

The reason we were at HKL today is for the new urologist (Dr F) to review and explain the MRU report to us. Cass underwent a third MRU last month and unfortunately, the MRU images are also not crystal clear. The previous two MRU scans showed vague images of an ectopic ureter going down south. However, the latest MRU report did not mention anything about the ectopic ureter! Thus, Dr F is baffled as to why the latest MRU report contradicts the previous two reports which suggested an ectopic ureter.

SIGH!! 😪

So here we go again, back to square one. The urology team, the team of radiologists and Dr S will be having an ‘X-Ray Conference’ to deliberate on Cass’ extremely mysterious urinary tract disorder.  Our next appointment with Dr F will be in early December 2022.

Dr F commented that they will likely not have a repeat MRU done as it’s not getting us anywhere with unclear images. Moreover, Cass fainted after the latest MRU. He suggested doing another Cystoscopy, which means that Cass will be warded and under GA for the procedure, which will be done in an OT 😰.  This will be Cass’ third Cystoscopy. The last Cystoscopy was performed two years ago during the lockdown.

I wonder when Cass and I will see light at the end of the tunnel.  All these have caused me sleepless nights and nightmares.  Thankfully Cass is not overly antsy and is taking things in stride.

Cass is now more mature mentally and during our consultation with Dr F, she kept asking the doctor questions.

We spent over 4 hours at the hospital today.

Before we finally got a seat after standing for 2 hours, Cass propped her Bio workbook on the wall and did her homework standing up.

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Barely 2 weeks into reopening after an almost 6-month break, many schools across the country had to be closed again this week as the number of Covid-19 positive cases in schools are surging fast and furiously.

Yesterday Cass’ high school sent a notice to inform that Junior 1 students only need to attend physical classes on Mondays and Tuesdays and on online mode from Wednesdays through Saturdays. However, another notice was shot out barely 24 hours later to inform that classes across school will be on a 100% online mode 😩

Here we go again 🥱.

I pray that there will be no more MCO or our entire economy will collapse. I am so sick and tired of the pandemic and how it’s affecting our lives.

As I’ve said it before, online classes are not effective for most students including mine and I think it’s quite a waste of our money on school fees. But the school has no choice given the perilous Covid situation now. In fact, last week in Cass’ class, several students reported that they were in close contact with Covid positive patients and the entire class was told to stay home for a day pending the Covid swab results of the affected students. Another classmate was in close contact with a Covid positive student who takes the same van.

Today is Cass’ Urodynamics procedure at HKL. It’s the second time that she went through this invasive procedure. The first was done 7 years ago when she was 6 years old. The test today shows that almost everything in the urinary tract looks and works pretty normally, which now narrows down the head of Urologist’s suspicion of an ectopic ureter. The recent MRU done recently showed vague images of a ureter exiting abnormally but a Cystoscopy done later (early this year) did not detect the suspected ectopic ureter. As Cass had undergone two abdomen surgeries when she was 13 months old, it is not easy to see things clearly inside with adhesions and stuff.

Another MRU (MRI) with Lasix (dye) has been ordered and the date will be given to us soon… which means that Cass has to go through another Covid PCR swab test 😢

The procedure lasted for about 1.5 hours and then we had a long consultation with the head of Urologist.

To be continued…

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I woke up at 3:15 a.m. today to heat up the meatless Gimbap that Sherilyn prepped for us last night.  Then I woke Cass up so that she could have her meal as her last solid meal before the Cystoscopy today is at 4 a.m.  I was worried that this brat would push me away as she has issues waking up early! Thank God she got up the moment I jostled her from her sleep.  I thought that she’d have no appetite to eat at such an ungodly hour (she’s never eaten a meal at this hour before, besides her comfort sucking from birth to 3 years old) but she noshed the Gimbap and even asked me to reheat the butter garlic mushrooms that Sherilyn cooked yesterday. After the main course, she ate some cut papayas and drank a packet of Izumio and then went back to sleep.   Cass loves her sister’s cooking. Good, I can now retire as the deputy in-house cook and can handover this portfolio to Sherilyn 😁

The Cystoscopy today went quite smoothly without a hitch. I was allowed to follow Cass into the OT and left after she was knocked out by the anesthetist. Before I left, the nurse asked me to give Cass a kiss on her cheek. That was when I was overwhelmed with emotions. All the memories of May 2009 at GMC Penang came flooding back again. And here I am again, going through this the 4th time with Cass and all alone again in a freezing cold OT, waiting anxiously and praying fervently. And it looks like this is not going to be the last time as Cass will most likely require to go through another major surgery.

I sat alone at the waiting area outside the OT (photo below).  The place is devoid of people due to the hospital’s Covid-19 SOP.  The entire place is freaking cold and you know what? I left my jacket at home!!!!   Yesterday I put the jacket in my handbag but when I took my purse out in the morning, I took the jacket out and in my haste to leave the house, forgot to put the jacket back into the bag. Luckily I  had a shawl (made from sheer fabric!) in the hospital bag meant for emergency purpose. And if not for the OT scrubs and head cover that I had to don on inside the OT, I would have frozen to death 😅.

To generate heat to warm up my body and to beat boredom, I walked back and forth this cold corridor for almost an hour while saying my prayers for Cass’ smooth procedure.

Out of boredom, I snapped this photo from the 8th floor of the hospital .

I managed to steal this photo of Cass at the recuperating bay in the OT. Cass will not be happy with me if she found out. Thus, I had blurred her face.

With the oxygen mask still on, Cass’ first few words when I asked if she was feeling OK was “I am so sleepy. This feels like History class” and then let out a tired chuckle😆

Once again, Cass and I were the last to be ambulanced back to the ward as she’s the oldest kid in the OT.   The hospital’s order of priority for all procedures is by age in ascending order.  The procedure started at 12:40 p.m. and we were only ambulanced back to the ward 3 hours later. We spent about 6 hours at the OT.  Cass was the last patient in the OT when we left at around 4-ish p.m.. It was Cass’ first time being wheeled into an ambulance on a stretcher. She was actually well enough to walk or be put on a wheelchair but again, we had to follow the hospital’s SOP.  After the ambulance dropped all the patients from the ward to another building where the OT is, the nurse even insisted that I wheel Cass on the wheelchair to the 8th floor where the OT is as she said that’s the hospital’s SOP.

When Cass was back in the ward at the Institute of Urology & Nephrology, she was almost 100% well again. She ate half of the keto Gimbap that Sherilyn made for me yesterday, ate half my walnut bun and ate the entire plate of rice with chicken and fried cabbage that the hospital provided. She was famished after more than 13 hours of dry fasting.

Below: the keto Gimbap that Sherilyn prepped last night for my lunch in the hospital. It was still very delish when I ate it at 4-ish p.m.

As for me, after two days of anxiety and deprivation of sleep, I lost another 1kg. My weight now is a mere 41.8 kg and I’ve been having heart palpitations the entire day 😔.

To be continued…

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So the urologist’s nurse finally gave me a date to bring Cass to see Dr Susan. We waited for more than 3 months since the MRU procedure on 18 May 2020 to get this appointment with me calling the nurse every week. And if it wasn’t because Cass got a UTI attack two weeks ago, the nurse wouldn’t have given me a date so soon.   I don’t blame her as this is a government hospital with a long list of patients waiting to see Dr Susan, the head of Urology Dept of HKL.  She could get me an appointment to see just any junior urologist but I only want Dr Susan to manage Cass’ complicated issue.   I can see that priority is given to dire needs patients, i.e. those with cancer or other pressing issues.

As usual, we had to ‘camp’ at HKL for almost the entire day just waiting, from 10 a.m. through 3-ish p.m..  Cass is now scheduled to undergo two diagnostic tests before Dr Susan can decide on the next course of action: a cystoscopy (bladder scope) scheduled in November 2020 and a MAG3 scan in December 2020.  Cass will have to be sedated under GA for the cystoscopy.

A renal MAG3 (Mercaptuacetyltriglycine) scan is a diagnostic nuclear medicine test that allows the doctor to see Cass’ kidneys and learn more about how they are functioning.  A radiopharmaceutical called Technetium-99m MAG3 will be injected into one of Cass’ veins. Technetium-99m MAG3 has a tiny amount of radioactive molecules in it. A special camera, called a gamma camera, is used to take pictures of the kidneys once the radiopharmaceutical has been injected.  During the briefing by the radiologist, I was told that after the MAG3 procedure, it’s best to avoid touching Cass as the radioactive materials can be transferred to anyone touching her. She will need to drink loads of water to flush out the radioactive materials.

This is the creepy old building that houses the radiotherapy and oncology unit at HKL.  We had to wait for almost an hour to get a date for the MAG3 scan and for a briefing by the radiologist.

From the specialist clinics building, Cass and I had to walk for about 10 minutes under the drizzle to this building and stopped twice to ask the patrolling police officers for directions. HKL is a very huge place with many buildings for different units. Patients and staff often have to walk from one building to another.  We walked past the A&E of HKL, the creepy place that still gives me nightmares 😱.   If only this congenital issue is covered by our insurer, I’ll choose a private hospital, any time.

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It took me almost half a year to finally secure an appointment for Cass to see Dr Susan, one of the top urologists at HKL. She has a wealth of experience dealing with a myriad of urological disorders from patients young and old. She treats patients not only at HKL but travels all over Malaysia to treat patients.  Dr Susan used to see Cass but I have not brought her back to see Dr Susan for almost 5 years.

Firstly, it was not easy to get through to Dr Susan’s nurse. When I finally got through, the nurse wasn’t around. Next came Hari Raya and the nurse went on leave. When I finally got hold of her on the phone, she informed me that she lost Cass’ file and she needed a referral letter again!!  W.T.Fun!

One day, the hubs needed to go to HKL to visit his staff who was warded for amputation of leg resulting from diabetes complications. What good opportunity for me to get him to hand over the referral letter to Dr Susan’s nurse.  That was the first step to getting the appointment. Yet, it wasn’t easy and I had to waste another month calling almost everyday to finally secure an appointment!

When the nurse gave me an appointment that was one month away, I flipped and pestered her for a closer date.  Thank God the nurse is pretty easy going and helpful and she told me to come next week, on 4 July 2019.

Yay, first mission of 100 accomplished!

On the day of the appointment, we waited for 3 hours before it was our turn. And the appointment with Dr Susan and the nephrologist lasted for almost an hour. Dr Susan was very thorough as usual. She re-studied the previous MRI  report done on 30 December 2014 and based on the remarks written by the radiologist, she ordered a repeat MRI. This time, furosemide (Lasix) will be given along with IV drips to yield clearer images.

Based on the previous MRI report, the radiologist’s conclusion is – there is a high possibility of an external insertion of an additional ureter. But the MRI quality was poor as Cass moved during the procedure. She kept commenting that her body was itchy!

If the repeat MRI shows an ectopic ureter, Cass would have to undergo another surgery. This time, surgery will not be on the abdomen as the doctor said that operating from the old wound would be extremely messy due to adhesions. Cass has had two surgeries on her abdomen.  Surgery will be from her back, where the kidney is 😭

Our next appointment to see Dr Susan is end September 2019. Hopefully we’ll get a date to do the repeat MRI by this year. And hopefully Cass’ lifelong bladder issues will be resolved once and for all by year end. 🙏

I was surprised when on the day of our appointment with Dr Susan, I saw Cass’ file on the table. The nurse managed to locate the file. Good job to her!!

RM10 for this plate of Malay mixed rice.  There’s only 1 cafeteria at the Complex selling Malay food. I didn’t enjoy the food at all and I totally hate eating with plastic cutlery, especially when I have to use it on chicken with bones!

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Cass and I were at HKL from 8:30am through 4ish pm yesterday.

Upon arrival at 8:30am, we had to go to the specialists clinic building to register and to get a referral form.  Then, hubs drove us  to the pediatric building for the ultrasound scan to be done.   After the scan was done, we had to wait over an hour for the hospital shuttle van to bring us back to the specialists clinic building as hubs had something to do at his office.  Then we waited for another 3 hours for the urology surgeon to arrive and finally we got to see her.

Cass, having her lunch of corn flakes at the hospital…

And finally, had her blood retrieved… which was as usual fuss-free and drama-free from this brave little girl.  And for that, she got a cute Princess band-aid from the nurse as reward! 🙂

We are now awaiting the hospital to call to give us a date for Cass to do a URI (something like Magnetic Resonance Imaging).  For this procedure, Cass would have to be sedated via IV.  And if URI does not have any conclusive findings yet again, then she will have no choice but to do undergo more invasive diagnostic tests 🙁   But I know my tough little cookie will breeze through them again 🙂

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Yesterday was the first time I stepped foot into the grounds of HKL (Hospital KL), the place that has always given me the creeps each time I pass by this building.  When I was working in the HR Dept of a bank yonks ago, our HR Manager and Assistant Managers would visit staff who were hospitalized at HKL.  They would then relate back to us gory scenes in the hospital – like criminals chained up to hospital beds, accident victims screaming in pain and much more.

The purpose of our visit at HKL was to bring Cass for a third opinion on her bladder issue.

True to what has always been in my head, the images became a reality yesterday.  It happened as the hubster dropped me at the wrong place – which was at the Critical Section and A&E section of the hospital!  The moment I alighted from the car, I saw a man, half dead being carried out from a taxi.  Then I saw a couple (Mynamar or Indonesian). The woman was sobbing away like she lost a dear one. She was in pain and had to be assisted by foot to the Ob & Gyn Building.  She was wearing a ‘sarong’ and her tummy looked bloated.  I think she lost her baby or something.  And there were many patients in wheel chair and in crutches at the A& E and Critical Section, seemingly from accidents.  Many policemen were stationed there.  I felt like I was in a nightmare and wanted to leave right away!  I was shit scared but did not want to show Cass my fear. I asked her if she was scared and she said “NO, not at all”  *brave girl*

After about half an hour asking and looking around, with bad traffic in the hospital compound, we finally found the right place.  Thank God the specialists building is a new building and does not have that creepy haunted look like the old building and had no gory scenes.   When I entered the Nephrology and Urology Floor, the place looks very new and very clean.   Queue was not as long as I had imagined.  After a 1.5 hour wait, it was Cass’ turn to do her urine and blood test.  Once again, my little tough cookie trained from her baby days, did not shed a single tear.  As usual, I hugged her tightly and consoled her as she winced in pain when the nurse drew out blood from her hand.  But no drama.

At about 1pm, we went out for lunch at a nearby Teochew restaurant.  Then we came back at 2pm to see the doctors.  After a 2- hour wait, it was our turn.   Our consultation with the urology surgeon and nephrologist took about 45 minutes.

In summary, Cass would have to go through a Urodynamics test  in April to see her bladder activities.  A catheter would have to be inserted into her urethra and rectum, with water pumped into the catheter.  She will be asked to pee.  Scary?  No.  I have confidence my baby girl will breeze through this again. She had gone through even much worse procedures in the past.

Cass was such a darling yesterday.  Someone in the house with itchy fingers disabled the iPad and I had no time to enable it.  So I told Cass that she could not bring the iPad along with her to the hospital, to which she replied “mummy, never mind.  I will bring  my school Math books and reading books.  It’s better right?”   When I re-tried to enable the iPad again, Cass said “it’s OK mummy, my Math books are enough. I don’t mind doing Math the whole day in the hospital. I don’t want the iPad!”  Isn’t she such a darling?   She drives me up the wall every single day but things like these that she says can really melt away all my anger instantly 🙂

So here she is, my Math lover, crunching numbers away to kill time while waiting for her turn at the hospital. She brought along a small note pad to do the workings, an eraser and a red pen for me to mark her sums!  At the shop while waiting for our food to arrive, she whipped out her Math books to do more number crunching LOL!  She now tells me that her ambition is to be an accountant.  I’ll see…

When she started to get bored with Math, she took out her English  and BM books and read to me…. so loudly that all eyes were on us muahaha!

My baby girl was very well-behaved yesterday. I don’t think I will meet another 5YO who can spend 4-5 hours solving Math sums and reading school books. On our way back home after the dr’s appointment, Cass said this to me “mummy, I did it without the iPad!!”

Oh yes, I think Cass thinks maturely too, way too matured for her age. God bless this baby girl and heal her real soon.

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