2.5 years have passed since Baby was operated on her urinary tract and again cut up to fix her small gut 2 weeks after the 1st op, as a result of complication from the 1st surgery. The post op MCUG scan and post op MAG 3 scan have both shown that Baby has no more kidney reflux. Her right kidney (the one that had 3rd grade kidney reflux and a duplex system) is also growing well. Thank God we did not listen to the first surgeon and have 20% of her upper right kidney removed. All is well with my Baby now. But she is still leaking urine. She needs to wear a pad or diaper all the time. While she knows how to tell me that she wants to pee when her bladder is really full, she cannot control the urine from dribbling out. The surgeon told us that she has a ‘lazy bladder’ now due to the operation. He asked me if I would like Baby to be given meds to relax the bladder but I prefer to wait and see. Our surgeon assured us that the urine leakage problem will grossly improve when Baby is 6YO… which means that there are 2.5 more years to go!! Oh, I cannot wait for the day that Cass is forever off diapers, once and for all.
On my part, I can help Baby by bringing her to the toilet to pee every hour instead of allowing the urine to leak out when the bladder is too full. By bringing her to pee consciously, this will train her bladder to ‘work’. I guess I have to set my mind and be mentally and physically ready for all the hard work – by bringing Baby to pee every hour and have a battle with her each time. This girl is often too engrossed with whatever that she is doing that she will refrain and resist from going to the toilet to pee. I really have to have a serious pep talk with Baby to condition her mind to go to the loo to pee every hour that she is awake.
Cassandra’s 5th post Ureteral Reimplantation surgery ultrasound scan.
Tomorrow’s the day. The day that I have been dreading for almost 2 years. Exactly 2 years ago, we were preparing for Baby’s surgery, which was held on 5 May 2009, the day that I will never forget. After an eventful stay in the hospital for 3 weeks where Baby was cut up twice, we were told that she will need to do another MAG3 scan 2 years post surgery to see the kidney function and flow of urine again. Though the 1st MAG3 scan 2 years ago showed that the dilated right kidneys on both moities were functioning well and the post operation MCUG scan showed no more kidney reflux, I am nevertheless worried, very very worried of all the ‘what ifs?’
Wish me luck. My motherly instinct tells me that Baby would behave well tomorrow during the procedure. I have promised Baby a big big rainbow ice cream and yolipop if she does not cry. Wish us luck. Cassandra needs lots of luck and prayers for a smooth sailing and yell-free session during the insertion of the brandula on her hand, a fuss-free, cry-free, yell-free and whine-free half an hour when the procedure is on-going in the procedures room of the hospital. I pray that she will lie still for the half an hour when the radioactive dye is injected and goes round the urinary tract so that a clear video can be captured. The procedure will be unsuccessful if she moves and struggles and probably will cost double if it has to be repeated. It costs over RM2K for a procedure and this is not claimable from our insurer.
I hate the thought of donning on the heavy, armor-look like long vest to protect myself against radiation while I am with my baby in the room. And I dislike being in the cancer center of a hospital. It makes me feel very down when I see cancer patients.
I have been potty training Baby for the past 1 week and I realized a little problem. While Baby does not wee wee ‘in full’ in her panties, I find that her panties will be slightly wet every half hourly. I suspect that she is leaking urine and she is not even aware of it. I really can’t recall if my #1 and #2 were like this last time. I had read from somewhere that kids with a history of Kidney Reflux will have a problem with potty training. And I recall Baby’s surgeon asking us if Baby’s diaper is wet all the time as he has a patient with Kidney Reflux who wets her panties all the time too. I must ask Baby’s surgeon if this is a problem when we next see him.
…. that Baby C does not have anymore Klabsiella bacteria in her urinary tract. More than a week has passed since the last urine culture test was done. I haven’t sent Baby C’s pee for another culture as her purging had stopped, her down under is not sore anymore and her pee looks rather clear. I am praying hard that the Klabsiella bacteria had been flushed out from Baby C’s body through her pee. I am also hoping that after the ureteral reimplantation surgery and all that she had gone through last month, her urinary tract system is now normal and functioning as it should have been. Now that the duplex system is fixed, I hope baby’s body is able to fight off whatever bacteria that is invading her urinary tract. Before the surgery, the urinary tract system is like a yoyo due to the double ureters. I am praying hard that baby’s urinary tract system is A-ok now.
I am still living in fear each day. I still smell and scrutinize baby’s soiled diaper each time I change her. For as long as there is no confirmation from the doctor or MCUG scan that she is free from Kidney Reflux, I am still petrified that what she had gone through for the past 1 year will still happen again. I am well aware that the success rate of the surgery is 96%-100%, so there is a chance that she still has kidney reflux.
In the meantime, I am feeding baby with barley water every other day as I was told by my surgeon that barley water is good for the bladder. I did a google search on barley water and UTI and found out that indeed, barley water, which is diuretic, is effective in treating UTI. Have also been feeding her with boiled lemon grass water. I read that coconut water is also good in treating UTI. Perhaps I should try feeding her with coconut water too. Hopefully with all these natural remedies along with being super clean with her down under, I can help stave off those nasty bugs from attacking Baby C.
Baby C has been poo pooing 3-5 times a day ever since she was discharged from the hospital more than 2 weeks ago. Several days ago, her down under turned sore and her pee also smelled a tad funny in the wee hours of the morning. These are normally the classic symptoms that would present themselves whenever baby has bacteria in her pee. I applied some Egozite and Pureen cream (both contain zinc oxide, which prevents soreness and nappy rash) on her down under and after a few days, the soreness went away.
Today, I took samples of her pee to the hospital for a urine culture. It was really difficult and stressful for me and baby. My maid and I had to break our backs waiting for her to pee for over an hour, yet she didn’t pee. She was struggling and crying. I even had to offer her my boop to calm her down, while my maid sat on the floor waiting to catch her pee with the specimen bottle. After more than an hour and a specimen bottle with only about 1/2 a teaspoon of pee, I told my maid to stop waiting as baby wasn’t cooperating. I also told my maid to throw the very little pee collected as it may be contaminated (in room temperature for over an hour and I think I spilled a little drinking water into the bottle). I then cleaned baby’s down under with some cotton and saline and stuck a urine specimen bag onto it. Within 5 minutes, she peed in the bag. I quickly asked my maid to hold baby in an upright standing position (so that the pee would not leak out from the specimen bag) and I hurriedly and carefully removed the specimen bag (which made baby yell out in pain when the bag was zapped off)…. and poured the precious pee into a fresh sterile specimen bottle. Next, I placed the bottle of pee in 2 layers of plastic bag and placed it in the fridge. Then, called the hubs to hurry home to send the pee to the hospital. Haih… my baby is always playing tricks on me. When I don’t need her to pee, she would always pee on me and on my bed…. and when I desperately want her to pee, she just won’t cooperate.
The urine FEME results showed that the WBC in her pee is 5-10 (which is insignificant) and there’s 1+ bacteria. I sent a text message to my surgeon to inform him. He replied and said that WBC of 5-10 is not a UTI…. he said that having a few bacteria in the pee after a bladder surgery is not uncommon and he will not treat baby as she’s well. I am praying hard that the few bacteria that’s lingering in the urinaray tract can be flushed out completely in a day or two, just like what had happened in the past…. without any treatment needed. Anyway, baby’s purging is slightly better today. As of now today, she has only poo pooed once and I hope the purging will stop coz in my baby’s case, no purging = no bacteria.
This is how my poor baby looked like yesterday… with tubes everywhere on her body – 4 tubes coming out from her tummy, one on her hand for the IV and one nasal gastric tube on her nose that gets connected to a bottle. My little trooper kept moving about and the bunch of tubes got entangled all the time. My maid and I now spend our days detangling the tubes and to stop her from pulling them.
Cleaning her bum after her poo poo is also tricky as the tubes will inevitably touch the poop. I can’t wait for the tubes and stents to be removed from my sweetie-pie’s body.
Our appointment with the new pediatric surgeon (who was referred to us by a pediatric surgeon in London) went well. This surgeon seemed very thorough, patient, confident and assuring. After a lengthy discussion, we were given a date for Baby C’s surgery. We will have to check into the hospital on the 4th of May, where an IV line will be set up on Baby C’s hand that night. The surgery will be carried out early the next morning and Baby C most likely have to be hospitalized for 4-5 nights.
Baby C was also prescribed a new antibiotics (Trimetoprim) after being off antibiotics for a week (when the E.Coli bacteria became resistant to all 9 of the antibiotics tested in the sensitivity test). I am praying that Baby C will not get another UTI from now until the day of the surgery coz if she does, the operation date has to be postponed again.
In the meantime, I hope to be able to feed Baby C more food so that she can gain a little weight. The surgeon said that Baby C is a little underweight. The surgery will have a higher chance of success if the child is bigger. This has to do with the size of the bladder and ureter or something to that effect. I don’t really know how to explain it but the doctor did mention about the size and weight of a child and their relation with the success rate of the ureter reimplantation surgery. Feeding Baby C and making her interested in food is a challenge for me now. My sweetiepie seems to get bored with a single type of food pretty fast and I have to keep changing menus and giving her new food to whet her appetite.
We were told by the surgeon that the success rate of the ureter reimplantation surgery is 97% – 99%.
Petite Baby C on the king-size bed in Northam Hotel in Penang. She cried and screamed throughout the 1-hour flight from Subang to Penang. When we finally reached the hotel, she was all smiles again 🙂
We will be taking a flight to Penang this Thursday to meet with the pediatric surgeon / pediatric urologist who was recommended to us by a pediatric surgeon in London. Our appointment with the pediatric surgeon, Dr N will be on Friday, at a private hospital in Penang.
This will be Baby C’s first time on board an aeroplane and I hope she’ll behave well on the plane. Anyway, it’s only a 1-hour flight. I hope everything will go smoothly in Penang this week and that the surgery can take place next week. This is one big hurdle for my sweetiepie and me this year and I hope that everything will be over and done with and behind us soon.
Over the telephone, this doctor sounded pretty confident that Baby C’s problem can be fixed with a clear-cut surgery, i.e. a ureter reimplantation. We’ll see what he says when he sees the MAG 3 scan report and films. I hope what the surgeon had told me is true and that Baby C’s problem can easily be fixed with the ureter reimplantation surgery.
This 2-day trip to Penang will cost us over RM1k… and hubby is about to break his wallet soon with the impending surgery…. and more trips to Penang. Haiz….
The pediatric surgeon in London has referred us to see a pediatric surgeon in University Hospital PJ. We were informed that this doctor from UH, who has years of working experience in London is a skillful surgeon. We will be getting the details of this surgeon from hubby’s uncle tonight. Hopefully we can make an appointment to see him next week and hopefully the surgery can take place in a week or two.
We have just received feedback from the surgeon in London. The pediatric surgeon is of the opinion that there is no necessity to do a partial nephrectomy (partial removal of the right kidney, i.e. the upper pole of the right kidney). He has recommended that a ureteral reimplantation be performed. We have however not received the complete details yet. Hubby’s uncle who is a surgeon in London will be helping us find a good pediatric surgeon in KL who can perform the surgery on Baby C. While I am glad that my sweetie-pie doesn’t need a partial nephrectomy, I am also anxious and worried that the ureteral reimplantation surgery will not be successful.
Our doctors have told us that many complications (which would lead to more infections) could arise in a ureteral reimplantation surgery. Sometimes, several surgeries will be required to fix the complications, if the first surgery is not successful in fixing the problem. I know complications can also happen in a partial nephrectomy. In fact in every surgery, complications can happen. I can only pray that God will help us find a good pediatric surgeon, that there will be no complications before, during and after the surgery and that Baby C will be free from UTI attacks and kidney reflux after the surgery. Please pray for us.
I am a WFHM with 3 beautiful girls - Alycia, Sherilyn and Cassandra. I quit the job that I love to stay home with my 3 angels as that's what I've always wanted to do. I am a health freak, fitness freak and a clean freak too. I love to eat and live healthily and I want my kids and hubby to do the same too. Apart from being obsessed with good health, I am obsessed with fashion! I own an online store that sells ladies and kids clothing. Check out my online store at Old & New Stuff For Sale
I always believe that your health is your wealth and if you have good health, that's the best gift you can ever ask for from God.
I have been writing product reviews, food reviews / restaurant reviews and product advertorials since 2007. Please email Shireen at firstname.lastname@example.org to inquire if you are interested to place an advertorial or review in this blog.