Category Archive: Cassandra

The MAG3 scan report showed that Baby C’s left kidney is perfectly normal and the right kidney is also funtioning pretty good.  However, our nephrologist is still of the opinion that the upper pole of baby’s right kidney be removed since there is obstruction in the ureter connecting to the right upper kidney.  FYI, Baby C has a duplex kidney.  It means she has double ureters on the right kidney, making the right kidney separate into 2 poles.   Our doctor told us that if the surgeon tries to reconstruct the ureters and bladder, complications like infection may occur and there will be a huge scar on the body.  If infection occurs, another surgery may be required.  Each surgery costs over RM10k!  Removing the upper pole of the right kidney (which makes up to about 15-20% of the entire right kidney) is still the best option. 

The hubs had couriered the MAG3 films and report to his uncle who is a cardiac surgeon in London.  His uncle will then pass the films and report to 3 pediatric surgeons who will study them.  We can expect an answer from them by next week hopefully. 

My guess was right. Baby C needed 3 doses of sedation meds to knock her out completely. The moment we arrived at the hospital, my maid and I fed her with 2 types of sedation meds. One was for 3ml and the other was for 7ml!   After fussing and struggling for about half an hour when we fed her the sedation meds, she knocked out and went into a deep sleep.  Thank God when I placed her on the bed for our doctor to insert the brandula (IV line) on her hand, she was still asleep but she woke up and cried when she felt pain. Thank God again that she only needed to be poked once and not between 3-7 times like in the past.

When my sweetiepie was jolted up from her sleep after the insertion of the IV line, she kept fussing though she was still groggy. Since Baby C is to remain absolutely still during the entire scan, I was worried that she would wake up.  If that happens, the scan would have to be cancelled and repeated all over again!  So we gave her another dose of sedation meds. This time, it was a struggle to feed her the sedation meds as she was sleepy and crabby. Thank God she did not puke, though she coughed and choked a few times and almost puked. After the 3rd dose of sedation meds, she was totally konked out. She slept like sleeping beauty throughout the half an hour scan. I was with her in the Gamma Picture Room at the Radiosurgery and Cancer Center of the hospital and witnessed the entire procedure. Also saw many cancer patients at the Chemotherapy Daycare Center. My heart really goes out to all those patients who have to undergo radiation and chemotherapy.

My little sleeping beauty.

The intimidating looking machine dwarfing my little sleeping beauty from above.  Baby C was wrapped up in a thick blanket and a special plastic sheet with velcro.  The sight of her lying so still and motionless and wrapped with a plastic sheet on the metal bed with the ginormous machine hovering above her sent shivers down my spine. 
Notice the double screen on the left?  Images of the kidneys and bladder are shown on the screen.

Permission was granted to me before I snapped the pix.

Total bill came up to over RM1,600! And all the medical bills related to Baby C’s medical condition will NOT be covered by our insurance 🙁

Baby C has been feeling groggy and sleepy since she took the sedation meds this morning.  As I am typing this post, she’s still sleeping.  I have expected my sleeping beauty to sleep for days since she took 3 doses of sedation meds!   We will see our pediatric nephrologist again tomorrow for her to explain the MAG 3 scan report to us.

Tomorrow  is our scheduled day to bring Baby C to the hospital for the MAG 3 Scan.  The scan will be carried out at the Radiosurgery and Cancer Center of the hospital.  In layman’s terms, a radioactive chemical will be injected through the IV catheter and the radiologist will begin imaging the kidneys. As told by our doctor to us, the radiation used is very, very minimal. It is even lesser than the radiation used in the MCUG and IVP scans, of which Baby C did about 3 weeks ago.

I am hoping and praying hard that this time, Baby C will be completely knocked out during the procedure coz for this particular scan, the child has to remain still so that the best quality images can be obtained. If there is too much motion during the procedure, the study may need to be repeated. I just have a strong feeling that Baby C will require 2-3 doses of sedation meds to knock her out completely.

Click here, for more information on the MAG 3 scan.

We will be bringing Baby C to see our pediatric nephrologist again tomorrow morning.  The urine culture test done on Tuesday shows that there are still 2 types of bacteria in her urine, namely E.Coli and Klabseilla.  Though Baby C is quite asymptomatic, the colony count is quite high at >100,000.   I think the single antibiotics jab given to her 2 weeks ago wasn’t sufficient to eliminate all the lurking bacteria. I just have a feeling that our doctor will give her another antibiotics jab tomorrow.  Poor poor baby….

I anticipate that it will take another 3-4 weeks before my sweetiepie goes for a surgery. By the time the surgery date is fixed, my sweetiepie would have already celebrated her first birthday.

First we need to find a surgeon in KL who will agree to the MAG 3 scan to be performed on Baby C, then Baby C has to go for the MAG 3 scan afterwhich the MAG 3 scan films have to be couriered to London. Then the surgeons in London have to review the films and come up with a diagnosis / appropriate surgery. I am hoping and praying that from now until the surgery date, Baby C will not get another UTI attack coz if she does, the surgery will have to be postponed further. While I am glad that my baby doesn’t have to be operated on so soon, my anxiousness is more intense now and prolonged.

We have just received feedback / second opinion from 2 nephrologists from London on Baby C’s condition. One of the surgeons said to go ahead with the partial nephrectomy surgery. The second surgeon’s advise is to get another scan done on the right kidney before deciding to remove the upper pole of the right kidney (20% of the kidney). The scan (which uses dye and radiation again) will see the activities and the functions of the kidney. It will determine which part of the right kidney is the problematic one, i.e. the upper pole or the lower pole. Maybe Baby C doesn’t have to have a partial nephrectomy afterall if it shows that the kidney is perfectly fine. Maybe another type of surgery will be needed… and that’s just what I am hoping for. We will wait for more information from the nephrologist in London (from hubby’s uncle who is a surgeon in London) before we get this scan done on Baby C this week.

Baby C’s pee started to smell foul again yesterday.  I had expected this to happen coz her UTI attacks is a monthly affair.  Today being a Sunday, we had to pay the lab staff of a private hospital double the charges for a urine FEME test to be carried out on baby’s pee.  The WBC (white blood cells) reading is 15-26 and RBC (red blood cells) reading is 5-10.  This usually signifies that there’s bacteria in the urine, though the readings are not exceptionally high.  But I know the WBC and RBC will slowly and surely accelerate over the days.  That’s the reason why at the onset of foul smelling pee, it’s best to get the pee tested right away and treat baby with the appropriate antibiotics immediately.  If the WBC and RBC are uncountable, baby would need hospitalization and heavy doses of antibiotics given through intravenous (IV).   Finding a vein on baby’s hand and feet is my worst nightmare.  She normally has to be poked and pricked many times before a vein is successfully found and line inserted.

I can’t do much now but to wait until Tuesday next week to see what bacteria is in the pee before our doctor decides how to treat baby.  Looks like the surgery would have to be postponed again (from 24 Feb to 3 March 09 to 10 March 09 perhaps) coz a surgery is not advisable when there is an infection in the body. 

The urine culture results (for urine collected on Thursday last week) came out today.  There is a mixed growth of bacteria in the pee and the colony count reading is <5,000.   Whenever I get this kind of reading, our doctors would normally tell me that this reading means that the pee was most likely contaminated when it was collected.  The colony count reading of <5,000 is insignificant.  A repeat urine culture should be done to see if there’s anymore bacteria in the pee.  But I know deep down that there is indeed bacteria in Baby C’s pee and the bacteria is beginning to grow and multiply.  I am all too familiar with the trend of the urine test results for the past 8 months.   Anyway, I will send Baby C’s urine to be tested again on Friday.

Today I collected Baby C’s pee for tests again.  The last test done was about 2 weeks ago.  The WBC today is 3-4.  I know this isn’t a good sign, though the reading is insignificant.  The fashion in Baby C’s UTI occurance is that it will come about 4-6 weeks after the last attack.  Her last attack was on 17 January 09.  As the days are drawing close to 17 Feb 09, I’m feeling the jitters now.  The WBC can accelerate real fast as the bacteria proliferates.  Though there’s no bacteria in her pee today, it could be there the next day.  Oh gawd, I just hope Baby C doesn’t get another UTI attack coz if she does, the surgery that’s scheduled to be carried out late this month would have to be postponed.