Cassandra’s MRU @ Hospital Wanita Dan Kanak-Kanak, KL (HWKKKL)

18 May 2020 – MCO Day 62 (Monday)

Hubs drove us to the hospital in the morning for Cass’ MRU procedure. Magnetic resonance urography (MRU) is a radiation-free exam that uses magnetic waves to create detailed pictures of the kidneys, ureters and bladder. It is a radiation-free way to look at the structure and function of the urinary tract, which is the part of the body that produces and transports urine.

We reached the hospital at 8:30 a.m. and  thinking that we were early  and feeling relived, I had no idea that we would be camping at the hospital until 8 p.m.!  And because there was no proper communication between the Urology Department and the Day Care Ward doctors and nurses, there was a lot of confusion and frustration.

The pediatric Day Care Ward is mainly for Cancer kids and other patients who need daycare treatments and scans with insertion of IV catheter. When the oncologist on duty saw the prescription papers, she was pissed off that no one from the Urology Dept. informed her of Cass’ case today.   Each time I asked her a question, she snapped at me impatiently and angrily as if I was wasting her time that she could better spend on more chronic patients who needed her prescription for the different cocktail of drugs.  While the nurses were all patient and helpful, I felt terribly chided that the doctor totally lacks empathy and compassion.  She could have toned down her voice and spoke in a more refined manner.

After waiting for more than an hour, Cass was sent to the OT to have the IV catheter inserted and blood drawn for a renal blood test. The oncologist and the nurse didn’t know that this test was needed before the MRU could proceed.  The oncologist tried to call the Nephrology Dept. (which is in another building) but the line was as usual uncontactable!  Had I not done my own prior research and reading, I would have blindly followed what the Oncology staff instructed. Different departments have different SOPs.  None of the staff at the day care ward was aware that Cass had to do a blood test first and only after a doctor has reviewed the blood test result can she be sent to the radiology dept. for the MRU.  Reason is if renal function is not good, the contrast may cause damage to the kidneys.  I really think that the Urology Dept. staff could have given clearer instructions to the Day Care Ward to minimize all these unnecessary confusion and frustration.  The Day Care Ward doctors and nurses are already very busy attending to high needs patients, some of which are chronically ill.

After waiting for half a day at the Day Care Ward, we were brought to another ward to wait for Cass’ turn to do the MRU.   But it wasn’t until another 5 hours later that it was finally her turn!

After spending a couple of hours at the ward, we were brought to another ward just outside the MRI room and we waited for another 3 hours there!  When I asked the nurse why we had to wait the entire day for our turn when we were at the hospital so early, it was only then that I found out that priority order is by patient’s age and not on a first-come-first-served basis. Again, different departments have different SOPs.  As there were many babies and toddlers today and Cass is the oldest kid for the MRU, she was the last on the waiting list!  Cass was finally sent into the MRI room at 6pm and the procedure lasted 2  hours.  I sat at the end of the room just staring at her and the gigantic doughnut shaped machine for 2 freaking hours whilst listening to the piped in music from 94.5 Mix FM.  Though I was given a pair of ear plugs to wear, I didn’t use them as the noise emitted from the MRI machine was bearable, kind of like super loud techno beats and someone blowing a trumpet into my ears… for 2 hours.

Just before Cass’ turn for the MRU was a baby with urinary tract problems. The baby had to re-do his MRI three times as he woke up in the middle of the MRI and had to be sedated again and again. Poor baby and his anxious parents! Because he was sedated thrice, the oncologist told the parents to admit him for the night.

Another area that lacked clarity and communication from the hospital – the staff were unsure whether Cass needed to fast before the MRU.  Initially I was informed by the Nephrology Dept. staff that Cass needed to fast for at least 4 hours prior to the MRU.  When I called the Radiology Dept. two days before the procedure to reconfirm the appointment, I was informed by the staff that no fasting was required as Cass didn’t need sedation. On the day we were at the Day Care Ward, the staff were still unsure whether Cass needed to fast as she was sent from the Urology Dept and they only have experience handling Cancer kids. Thus, Cass was advised to fast, to be on the safe side.  Cass only ate some mangoes and guava in the morning and I brought fried rice and a bun to the hospital, thinking that we could eat while she waited for her turn but it was only 13 hours later that we could eat!  Thank God she didn’t have any colic pain and gastric pain, like she normally would if she skipped a meal. I wasn’t so lucky. I had gas trapped in my abdomen that caused me terrible pain and nauseousness.

Our next hurdle is the MRU report and appointment to see the Nephrologist, which I guess will only be after the Hari Raya holidays. I hope that this time, the Nephrology Dept. staff will be more efficient and won’t make us wait for another half a year.   This is the price that we have to pay for getting free consultations, diagnostic tests and treatments.  Today’s MRU procedure is absolutely free as I have a letter from Cass’ school confirming that she’s a student. Had this been done at a private hospital, it would have cost a few thousand Ringgit.  This is the privilege that Malaysians get to enjoy.  Overall, apart from the lack of communication from the two departments, it’s not exactly an icky experience. At 5 p.m., the grouchy Oncologist from the Day Care Ward came to explain things to me before she left.  OK la, she’s forgiven.  I know she must be stressed out dealing with drugs and her high needs Cancer patients.  This hospital is new and clean but if you are there for the first or second time, you may get lost in the building!  The nurses and most of the doctors are very helpful, patient and compassionate. The facilities are definitely comparable to private hospitals.

At the Day Care Ward – the little girl on the bed opposite Cass is also 12 years old and she has Leukemia. She has to be sedated to do a spinal procedure.  Such a pretty girl she is, even without hair. I saw her sweet face when she removed her Tudung and face mask. I hope that she will overcome Cancer and enjoy many healthy and happy years ahead of her.

Having her temperature taken:

Another young girl is on this bed and she was also sedated to do a spinal procedure.  When she woke up, she threw up everywhere and her father carried her to the sink. Bless her loving father and the cleaner who had to clean up the vomit on the floor.

Cass at the OT to have an IV catheter inserted. Not a pleasant sight here as blood is everywhere on the floor and gobs of hair on the bed (from cancer kids) and there’s not enough time to clean up given that there were so many young patients and the doctors were working at full steam.

Having her blood drawn out by the doctors. This tough cookie said that it’s not that painful!

Backflow of blood dribbling out from the catheter – another caring young doctor (who’s handsome 😆) helped to flush the line and put on a new cap.

Mobile signal strength is super crappy throughout the hospital. I can’t even use my own mobile data.  At this ward pictured below, there was hardly any human and I just sat there staring at the four walls waiting for time to tick away.



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Cassandra’s Follow-Up Checkups

Cass needs to do a yearly ultrasound scan of her urinary tract, especially the kidneys until she turns 12 years old.  In the initial years after her surgeries, we used to go back to GMC Penang to have the scan done but her surgeon has given us the green light to have it done at any hospital in KL.

We brought Cass to UMMC once to have the ultrasound scan done, and then to HKL (Hospital KL). And in the last 3 years we’ve had the scan done at Pantai Hospital.  Cass’ pediatrician has advised us to go back to the nephrologist and urologist at HKL as he’s of the opinion that Cass will be in better hands under the specialists there as he is only a child specialist and not a specialist in the area of nephrology and urology.

So I guess that this will be the last year that we see Dr Eric. Next year, we will have to go through all the inconvenience again when we go back to HKL to consult the nephrologist and urologist and for the ultrasound scan and blood works to be done.  This would mean camping at the hospital from 8am through 6pm for 1-2 days or possibly even more days.  😖😭

I hate getting on an ambulance with Cass to go from one department to another at HKL. From the specialists’ clinics building, we have to wait for an ambulance to ferry us to another building to the radiology department to have scans carried out. Payment is sometimes done at the Accident & Emergency Department, which is the department which I shudder going to.  One will always be greeted by lots of gory scenes at the A&E.

I. Hate. Government hospitals!!  It’s a nightmare for me.

The only advantage is we get to save lots of $$$$ if we have everything done at a government hospital.

Cass having an ultrasound scan of her urinary tract at her latest checkup at PMC, Bangsar.

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Electromagnetic Acupuncture

On top of the daily therapy exercises on the fitball, trampoline, gripping exercise and pelvic floor exercise, Cass went for her first electromagnetic acupuncture session on Tuesday to treat her bladder issue.  Though I have read that acupuncture and electromagnetic acupuncture can be effective in treating weak bladder issues, I am not sure if it would work on Cass. But I am willing to take a gamble and hope to get a ‘windfall’ with her issue being resolved in the shortest possible time.

 

Sat 19 Nov - 4

As always, Cass was as brave and tough as ever, without shedding a drop of tear.  The treatment can be very painful at certain points of the body and even hubs and I had to cringe in pain at certain points.  For me, the most painful point was on my thighs and for the hubs – on his back. On the head, it felt as if there were a bunch of crabs with sharp claws clawing bitterly on my scalp. Painful yet ticklish. I sought treatment for my daily hand numbness and hubs sought treatment for sports injury.  Cass did not even utter a single sound, except for clenching her fist in pain.  My brave little soldier.  She is indeed the bravest and toughest cookie I have ever met.

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