Cancellation of Doctor's Appointment

I cancelled my appointment to see the head of Urologist at HKL last Friday after hubs told me that there's an active Covid19 cluster at HKL (Jalan Pahang Cluster). Actually I wanted to go ahead with the doctor's appointment as it's not easy to get an appointment for Cass and I to see Dr S during the MCO. Dr S will only see patients on a case by cases basis.  And only emergency surgeries will be carried out during the MCO.   But hubs was very insistent that I postponed the appointment due to the surge in Covid cases for the past few days.  

I called the nurse in charged of Cass' case and asked her if I could instead speak to the doctor over the phone.  She then helped me to get Dr S to speak to me via phone the next morning.   Dr S discussed with me what she intends to do - which is to have a repeat Urodynamics test done and from the result, she will determine if it's viable to do a Endourethral injection of bulking agents into Cass' bladder neck.  Cass did a Urodynamics test more than six years ago, when she was six years old.  

As to the MAG3 scan that Cass did last December, I'm thankful and relieved to hear that Cass' kidney function is good on both kidneys. 

It's going to be a long and tedious journey ahead for Cass and me, her primary caregiver.  But Cass and I will soldier on no matter how tough the journey will be.  We know that there will be light at the end of the tunnel.   

Monday, 7 December 2020 ~ Cassandra's DTPA Renal Scan

Cass did a DTPA renal scan at HKL today. For the first time, we needn't have to camp there the entire day. Waiting time was 5 hours, which is considered very fast at HKL. We reached HKL at 8 a.m. and left the hospital at 2-ish p.m.  The renal nuclear scan lasted an hour. Thank God everything went pretty smoothly today. But the report will only be ready in a week's time and my next appointment to see the head of Urology is in early February 2021.  Hopefully we'll be given an earlier date to see the doctor.  

Though we've spent almost the entire year in home quarantine this year, it's nevertheless a blessing in disguise for Cass. Had there been no lockdown, Cass would have to skip school several times and may even need to skip a few major exams to undergo all the diagnostic tests at HKL. With HKL, if you postpone a given appointment, you may have to wait for months for another!  In summary, these are the diagnostic tests that Cass did this year:

1.  MRU 

2.  Cystoscopy 

3.  DTPA renal scan

4.  Ultrasound scan of her kidneys

5.  Several rounds of blood and urine tests

I hope that this will be the last invasive diagnostic test that Cass has to go through and her surgeon will be able to diagnose and tell us how she intends to perform the surgery to fix the issue 🙏. It appears to be a complicated problem (finding the root is perhaps like finding a needle in a haystack) and I pray to God for His direction and intervention in resolving Cass' issue soonest.

This is the waiting room for all the patients injected with nuclear medicine with radiation. They were all waiting for their turns to do their scans. 

 

Some of these patients had to go to IJN for a heart scan and some were redirected to the Cancer Society.  Accompanying relatives/friends were advised to wait outside the room as the waiting room has circulating radiation.  There's even a separate toilet for 'radiation patients' to use.

I killed time by walking up and down the corridor for more than an hour (again!).  This is the only way I can clock in a minimum of 7k steps on a hospital visit day where I have to skip my morning exercise. I walked back and forth the corridor outside the OT for more than an hour when Cass did a Cystoscopy last month.  So to those of you who always say that you have no time for exercise - you can still do it if you are determined.  If there's a will, there's always a way 😉💪

This is Cass after the procedure, waiting for the IV catheter to be removed. She had to wear this oversized hospital pants meant for an adult as her denim skirt has a metal button sewn on it.  All metal accessories and clothing must be removed for the DTPA scan.  This stubborn girl was in a terrible foul mood this morning and refused to listen to my advise to her to wear a shift dress 😠

Stories From The Ward @ Institute of Urology and Nephrology, HKL

Cass and I were put into a first class room with 4 beds at the Institute of Urology and Nephrology last week when she did a Cystoscopy procedure under GA.  The room was very clean and has en suite facilities. It's a far cry from the ward that we were put into at the pediatric ward at the old HKL building 6 years ago when Cass did her first MRI.  That ward was creepy and old and the toilets outside still give me bad dreams. It certainly didn't give me a good impression of government hospitals.

Directly opposite our bed was a jovial and chatty Indian lady in her mid 60s. She had been staying at the ward for 10 days and the day we checked in was her discharge day. She was in the hospital for an eye surgery followed by a bladder surgery to have some stents removed. She told me that she's been a cancer survivor for 10 years but sadly the cancer relapsed recently. She told her oncologist that she didn't want to get treatment and would just prefer to die slowly. What made me truly sad for her is on the day of her discharge, she had to take a taxi home by herself and lugged her big suitcase down to the lobby all by herself. She told me that her son is a lawyer and has been extremely busy, thus couldn't fetch her back from the hospital.  What if this happened to me 20 years down the road when my 3 daughters are too busy to help me discharge from the hospital? 😌

On the left opposite side of us was an Indian lady with her 6-year old daughter. They had taken a train from Ipoh in the morning and came straight to the hospital from the train station. She had bought 2 boxes of KFC which were to be her lunch and dinner that day. Her daughter has recurring renal stones and this was her second (or perhaps third) admission for laser removal of the stones.  This mother looked very aloof and was very terse with her answers and just didn't want to have any eye contact with me. She looked very distressed and I truly understood what's going on in her mind. The pissed off look on her face could be because she's extremely worried. Moreover she's alone with her daughter and hundreds of miles away from her other children and husband.  When her daughter came out of the surgery the next day and refused to pee or eat her medicine, this mummy, out of frustration, threatened the daughter that she would not look after her anymore and would send her to her grandma's house. Her daughter bawled and then mummy hugged her and cried along. This made me tear up too.  Mummy continued coaxing her girl to pee and eat her medicine for more than hour. When we left in the late evening, she was still coaxing her daughter.  We bade our farewells and I tried to coax the little girl to eat her medicine. I hope she didn't give her mummy many days of heart-breaking time in the hospital.

On our left bed was a Malay lady in her early 50s who's been in the ward for more than a week. I didn't really get to chat with her except for the daily "hi and bye" but I think she's got some urinary tract issues as well. She had a bunch of disposable urinary catheter to help her drain her urine out and she needed diapers. 

After the senior Indian woman was discharged, a Malay lady with her 9-year old girl got themselves checked in. The little girl  has recurring renal stones too and needed to undergo a laser procedure for removal of renal stones.  The girl is such a bubbly and smiley girl who would smile and wave to me each time she saw me.

Cass was the last of 5 patients to be wheeled into the OT as she was the oldest kid.  And we were the last to be ambulanced back to the ward. Again! And all 4 kids before her had renal stones removal. I was shocked to know that even young kids are prone to recurring renal stones.

When we left in the evening, Cass commented that it felt strange to be in a room with people who have quite similar problems with her.  I think it won't be too long before we are back for another stay when Cass undergoes another surgery. This time, it would be a major surgery. I've been having sleepless nights thinking about Cass' next surgery. I've never really had a good relationship with hope but I am trying my best to stay positive and not let my anxiety affect me. I truly need lots of miracles and divine intervention for Cass now. 🙏

This is another photo that I stealthily took outside the OT when Cass was waiting for her turn to be wheeled into the OT.

Me in OT scrubs and OT Crocs with Cass next to me playing with her phone. All the kids waiting for their turns for surgery sought comfort from their phones. And they all looked just as tough and calm as Cass. I'm sure they'd gone through a lot, just like Cass.

Day 20 On Izumio Hydrgen Water For Incontinence

Yesterday Cass passed yet another historic hurdle!

While Cass was dressing up to go out for lunch, she asked me if she could go out without her diaper and panty. I said NO as I was not ready yet. I should have flogged myself for lacking confidence in my own daughter. So she wore her pull-up diaper and off we went to the cafe.  After her delish meal at the cafe, I brought Cass to the toilet to pee. When I gave her a change of clean diaper,  she told me that she wanted to try going bare.  Since she exuded so much confidence, I agreed with fingers crossed!

After lunch, we went to several places.  We dropped Alycia at the hair salon and then went to the optical shop to have Sherilyn and hubby’s eye glasses fixed. By the time we reached home, it was over an hour and Cass made it without a leak of pee! We both did our high fives and shouts of victory!

Being the ambitious tough cookie that she’s always been, Cass set her alarm to 2 rounds of 1 hour, which equaled to 2 hours when we were at home.  I was not even aware that she was holding for 2 hours until she broke the news “mummy, do you know that I didn’t pee when the alarm rang after 1 hour? I set it to another 1 hour. So I actually did it for 2 hours mummy!”

On 12 of April 2015, just 3 days after turning 7, Cass could hold on to her pee for 2 hours without a leak of pee!  For those of you who know how badly Cass has been leaking pee all these while, this achievement is priceless.   Cass’ urology surgeon told me recently  that she wanted Cass to go through a CT Scan with IV contrast (with high radiation) to see her kidneys and urinary tract as all  previous tests and scans were unable to detect anything significant.  I am so glad that I listened to my guts feeling and decided not to go ahead with it. In fact, hubs and I have come to a conclusion that we will not let Cass go through anymore invasive scans, even before she started to take Izumio. We love Cass too much and it pain us too much to have to see her go through these invasive scans, risking her to so much exposure to radiation.  But  I think I should see her doctors to them about Izumio. If it can help Cass, I am sure it can help other patients like Cass.

We ought to paint the town red to celebrate but I shall save that to a later date.  I was busy helping Cass and Sherilyn with revising for their exam, which begins today.  As of now, Cass has passed half the hurdles. She has half more to conquer and I am confident that we will be able to reach the finishing line knowing that our backs are on God. And we have Izumio to help with the repairing works internally.   Have I told you yet about a dream that I had about 2 years ago that I met Jesus? I shall also save that for another time.

This morning, I woke up feeling really sluggish.   My head was heavy and I dozed off at 8am while having breakfast! I felt like doing nothing but just drop on my massage chair to sleep until Cass returns at 2pm.   It must have been the lack of sleep I have been dealt with lately.  Since last week and until September 2015, my Saturdays will  be like any other regular school-going days (waking up at 4:45am)  as Alycia has to attend full-day school in preparation for the UPSR exam.   But after downing a packet of Izumio, I felt energized instantly, as if I have just taken 2 hours of power nap.  Now, I can’t even get myself to doze off though I am on my ‘sleep machine’ aka massage chair!

For more reading on Izumio and Super Lutein, please click on the following link:

 Izumio Hydrogen Water and Super Lutein

Izumio and Incontinence

Super Lutein

Day 18 On Izumio Hydrogen Water For Incontinence 

Day 18 On Izumio For Incontinence

Today is day 18 that  Cass  is  on Izumio hydrogen water... and on her road to recovery.  Things are looking up. So far, there has been no leakages.  At home, she is 100% bare at the bottom, all the time that she is awake.  She still needs to put on a diaper when she sleeps.  She tells me that she has to go bare at the bottom to have a better feel and control.

From soaking a 42cm long pad with wings up to the panty after only just 20 minutes, Cass can now hold her urine for over an hour! I am so proud of achievement. She is setting the target for herself. Everyday, she diligently sets the alarm to an hour. The moment the alarm rings, she goes to the toilet to pee, willingly.  Previously when she was on diapers, she would be lazy to pee in the toilet, knowing that she has the diaper to hold her pee. When she's in a foul mood, she would get really bolshie, to the extent that I had to use corporal punishment on her. Just to get her to pee.  I was really depressed and so was she.    These days, I am less stressed up as Cass holds the fort.  She times herself, goes to the toilet to pee herself, washes up and then sets the alarm again - all on her own.

Just a week ago, her 'test' was to hold on to half an hour.  This week, she is holding on to over an hour and not a drop of pee leaked out!

I have set a Target Chart for Cass, as follows:

Hurdle 1 - hold on to pee, to an hour. She passed this with flying colors as she can exceed an hour.  Kudos to my baby girl!

Hurdle 2 - hold on to pee and start doing strenuous activities like running and jumping without leaking. We are still working on this. When her bladder has just been emptied, she can do all these but when her bladder is full, she will leak a drop or two upon jumping.  It's ok. Baby steps...

Hurdle 3 - go out without wearing diaper.  This is a challenge. This would also mean that we can only go to places with clean toilets and with toilets easily accessible. I am still planning on how to go about doing this.

Hurdle 4 - this is the real challenge!  Going to bed without wearing a diaper.  I guess I will save this for the long school holidays, where I do not have to wake up at 4:45am to prepare the girls for school.  We will also have to let her sleep on a mattress on the floor with lots of water-proofing. I may have to sleep next to her to wake her up to pee.

For now, I will not try to be too ambitious. After all, it is only 2 weeks that Cass started consuming Izumio hydrogen water for her incontinence. I am confident that over time, her muscles and nerves will get stronger, as with her cognitive ability.  I am already very thankful to Izumio and also to God that finally, the muscles and nerves 'woke up from a coma' and start to work again. Now, it is rehab time.

If you know of someone who has been battling with incontinence, urine dribbling, diabetes, eczema, eye disorder, cancer, high blood pressure or any other kind of disorder, you may want to recommend Izumio hydrogen water and Super Lutein to them.  You can google search for information on how hydrogen water repairs and heals the body as well as Super Lutein.   You can email me, Shireen at shireenyong@gmail.com if you wish to find out more on the products :)

For more reading on Izumio and Super Lutein, please click on the following link:

 Izumio Hydrogen Water and Super Lutein

Izumio and Incontinence

Super Lutein