Seventh Anniversary Of Cassandra’s Surgeries

I have been telling myself that I ain’t going to post about the anniversary of Cass’ surgeries in my blogs anymore. It is still painful for me to look back at the pictures and read those May 2009 blog postings.  But I just can’t help thinking about what we went through on 5 May 2009 at Gleneagles Medical Center, Penang. Not a single day passes by without me thinking about my nightmarish 3 weeks stay in the hospital with Cass in May 2009.

Many of my readers  who have been following my blogs ever since I started blogging in April 2007 had read about what Cass and I went through in May 2009.  Yes, my blogs turn 9 years old this April 🙂

Every hour that transpired on 5 May 2009 is still vivid in my mind.  That was by far the worst day in my life. Every thing that could possibly go wrong went wrong that day.  I thought Cass and I were really screwed. Damn Murphy’s Law! Hubs was also hospitalized at the same hospital and in isolation for suspected H1N1.  He was so sick that he could not even muster the strength to open his eyes and mouth to check with me on how Cass was doing.  I was down with a terrible flu and had to don on a face mask 24/7 and had no choice but to walk to the outpatient department to get some meds for myself, lest I spread the bugs to Cass.  Alas, Cass got the flu bug too.  Imagine having sutures on your abdomen and dealt with a bad flu.  Double whammy!  Cass’ surgery was extended as the surgeon could not find a proper vein for insertion of the IV line, among other jinx.  Oh yeah, there was also a power failure on the day of the surgery, after Cass was wheeled out of the OT room.  More unfortunate events continued to hex us in the days to come.  Can you believe our hard luck?

Many pictures were taken during our 3-week stay at GMC Penang.  I distracted my mind from worrying the entire 3 weeks by blogging. Many strangers, friends and blog friends sent me comforting messages. Some of them even dropped by at the hospital to pay us a visit.

A few of my blogger friends organized a donation drive to help us fund parts of the enormous hospital bills. I will forever be grateful to PL and Michelle for their kind deed.

The below picture was taken on the 2nd day post-op on 6 May 2009. There were tubes all over Cass’ frail and tiny body.

At 13 months old, she weighed a miserable 7kg. Her weight dropped further after 3 weeks of nil-by-mouth in the hospital 🙁

Cass was devoid of a proper bath for 3 weeks. The nurses could only wipe her down.

 

Below – after 3 weeks in the hospital, Baby C (her moniker in my blogs) was finally given the green light to be discharged. That was the best Mother’s Day and wedding anniversary gift for me.

I thank God for His continuous mercy and healing upon Cass.   She is now free from Kidney Reflux and on the road to recovery from incontinence.

 

Cassandra’s 2nd Year Post Surgery

Today marks the 2nd year my Baby was operated on.  Exactly 2 years ago today marks the change in our lives, change for the better, though the 3-week stay in the hospital was a nightmare where everything that could go wrong went wrong.  Hubs was hospitalized on the day of Baby’s surgery on suspicion of H1N1 and was isolated, I had high fever myself and was terribly weak but had to remain strong physically and mentally, Baby’s surgery had a complication and she was cut up again a week later.    But I thank God that we managed to wade through the darkness and saw light at the end of the long, long tunnel.

For those of you who have been following my blog, you will know what Baby and I went through from the moment my gynae detected that Baby’s right kidney was dilated at 14 weeks of gestation while she was still in-utero.  That moment in the gynae’s clinic up until the the surgery at 13 months old had been very tough on me. The gynae even feared that the baby would have Down’s Syndrome coz a dilated kidney is often one of the symptoms.  I subsequently went for an Amnio which confirmed that she’s one normal baby girl.   Happiness only resurfaced in our lives after the post surgery MCUG scan which revealed that Baby had no more kidney reflux.  Baby was 2 years old then.  The latest MAG 3 scan that Baby went through also showed that her right kidney is functioning and draining well and once again confirmed no more reflux and no blockage.

My very expensive Baby girl. She overcame all odds and all obstacles that were in her way. She’s one little cili padi, the bravest baby I have ever met.  Notice the scar below her navel?  That’s the cut for the 2nd surgery she went through 2 years ago.  I pray to God that He will bestow Cassandra with good health, happiness and no more surgery ever.


First Anniversary Of Cassandra’s Surgeries

Today marks the first anniversary of my sweetie-pie’s first surgery, a complicated 5-hour Ureteral Reimplantation surgery. For the past 1 week, I really cannot help but keep reminiscing the days leading to her first ever surgery exactly a year ago. As I browsed through my picture folder this morning and viewed the pix of Baby and me in the hospital last year, my heart felt twitches and jabs, as if someone was poking a recovering wound. The pix of Baby (then 13 months old) lying on the hospital bed listlessly with a bunch of tubes and wires all over her body brought back a lot of unpleasant memories.

Exactly a year ago at this time, I was in the OT room with Baby, with her in my arms. I will never forget the moment when the anesthetist administered the GA through the IV catheter and I watched my baby knocked off into a deep sleep within seconds. Placing her on the hard metal OT bed was the most painful and emotional thing for me thus far. I kissed her on the forehead and said “God please bring Cassandra back to me safely”….

Baby was poked more than a dozen times all over her hands and feet during the 3 weeks hospital stay for purpose of insertion of the IV catheter. Each time the IV catheter was inserted, her hand or foot would turn swollen the following day, thus the almost-daily re-insertion of the IV catheter. The most painful and traumatizing moment for me was when I saw how the nurse wrongly inserted the nasal gastric tube through Baby’s nostril direct into her throat and stomach late one night, which caused her immense pain as that was done without any GA or LA. Baby was in so much pain and trauma that she her body turned frozen for a moment, she bawled and puked green stuff all over. The tube was removed and re-inserted by the surgeon the same night! When Baby returned to her room, she was shivering profusely and her temperature shot up.

Over a hundred pix were snapped during our 3 weeks stay in the hospital. I just could not bring myself to finish viewing those pix.

Here is just one of the pix. It was taken on the 2nd day post-op on 6 May 2009. There were tubes all over her frail tiny body. 

Dear Lord, I pray that Cassandra never ever have to go through another surgery in her life ever again. Amen.

Baby C Is Finally Discharged!

…. but to play safe this time, we ain’t going back to Ipoh or KL just yet.  We are now staying in a hotel located just next to the hospital.  This time, the hubs and I want to make sure that baby is really well before we bring her back to Ipoh, and then back to KL. We do not want to make a mad dash back to Penang, just like what happened 2 weeks ago when baby kept puking the night she was discharged from the hospital and we drove back to Ipoh.  Anyway, the hubs have just flown back to KL and I’m in Penang with Baby C and my maid.  He may bring Alycia and Sherilyn to Penang on Saturday for a short holiday, together with my parents.

Anyway, baby has been showing signs that she’s really, really famished! Each time hubby, my maid and I ate in the room, she would point at our food and stare at the food, afterwhich she would lap her lips and swallow her saliva. Aawwww, poor baby…. I wanted so much to feed her and plump her up BUT I know I just have to be patient. My poor baby had just gone for a surgery involving her guts and I have to go easy on her food intake. Today is only the 6th day post-surgery (2nd surgery) and I’ll go slow when it comes to feeding her with solids.

My heart crushed again today when our surgeon removed the Central Venous Catheter from baby’s chest. The 20 minutes or so when baby was in the treatment  room felt like 20 days when I heard my poor baby yelling and yelling away.   I felt really helpless as I wasn’t allowed to be in the room and I could not hold her hand, stroke her head and wipe her tears away.  Her cries and screams were really loud eventhough the door was closed and we were outside waiting. Our doctor had to inject an LA (local anesthetic) on her chest before removing the catheter. For this procedure, I would rather not be in the procedure room coz I knew that if I saw the procedure, it would haunt me forever again, just like how the insertion of the NG tube into baby’s nostril is haunting me now, after I had seen how the nurse inserted it into my poor baby’s nostril. I will never forget the paralyzing fear and pain on my poor baby’s face…. and then she cried till she puked out green bile liquid with tinges of blood (caused by the NG tube). Poor baby was so traumatized that the following night when she was brought to the treatment room to have her IV line re-inserted, she yelled and bawled and shivered uncontrollably when the whole torturous procedure was over. I pray that my baby will never ever have to go through all these again.

My heart was further crushed when the Sister weighed baby today. Her weight has dropped further. From 8.2kg (pre-surgery), it dropped to 7.8kg (post-first surgery) and now it has dropped to 7.5kg (post-second surgery). Baby C is now the weight of a 6-7 month old baby. I had tried my utmost best to plump her up to get her ready for the surgery and now, she has lost all that she had gained. Haih, really heartbreaking…. but when I saw a frail, sickly, very skinny and tiny 16-month old toddler with a hole in the heart today, I consoled myself that at least Baby C doesn’t look that terrible. I really felt for the poor baby and his mum. They have checked into the hospital for almost 3 days and this afternoon was the baby’s open heart surgery. I think I will visit this baby tomorrow when I collect Baby C’s porridge and clear soup from the pediatric ward. Yes, I have ordered food for baby from the pediatric ward and the Sister was kind enough to have arranged that for me for my stay in Penang for the next 3 days.

These pix were taken yesterday. Baby C has been obssessed with food for the past 2 days and didn’t have much interest in her toys. So I let her play with my snacks…. her eyes lit up when she saw those snacks and she looked too cute when she pretended to eat my Twisties and Kasugai beans!

Baby C Re-admitted Into Hospital

Baby C was discharged from the hospital yesterday.  Words couldn’t express how happy I was when our surgeon told us that Baby C can be discharged after  being cooped up in the hospital for 11 freaking long days.  I was also so happy to be able to feed my baby food again.  She was happily enjoying her eggs and soup and I was so happy to be able to nurse her again.  BUT…… our nightmare began again at 11:30pm last night.

I woke up to have a sip of water when I heard Baby C coughing.  Immediately I knew she was in for trouble.  I turned on the lights and saw the comforter soiled with her vomit.  The bed was covered with her vomit.  My maid and I moved around like zombies cleaning the bed and bathing baby as her body was soiled with vomit too.  Long story cut short, she puked again at 3:30am on another bed in another room.  I was sleeping in vomit and smelt vomit the whole night.  Towards the morning, baby wanted milkie and I nursed her a little.  A couple of hours later, she puked again, several times. 

At 9am, I immediately sent a text message to our surgeon.  I later spoke to him over the phone.  He wanted us to go back to Penang as he wanted to see baby’s tummy.  He wanted us in ASAP as it was a Saturday and the X-ray department staff work half day.  Hubby and I made a mad dash back to Penang.  We reached Penang just before 1pm and the surgeon ordered an X-ray and a CT scan on baby.  My poor baby had to endure another 2 rounds of intimidating moments with ginormous machines above her, especially the CT scanner.  As usual, I had to wear a special suit made of plumbum since I was with her throughout the scans.  I tell you, I can’t believe Baby C’s misfortunes.  She had gone through so much and I think she had also gone through most of the scans and X-rays available from MCUG to IVP to Fluoroscopy to ultrasound scans, X-rays and today a CT scan.

The scans today showed that her guts are still dilated, albeit the dilation has subsided as compared to the scans done several days ago.  Our surgeon who examined her tummy said that it is soft (which is a good sign.  A hard tummy is no good).  Also, he cannot really confirm that her guts are obstructed since the Fluorscopy confirmed no obstruction and there is no yellowish bile fluid flowing out from her nostrils.  If indeed there is an obstruction, her tummy would also be grossly bloated and she will look terribly uncomfortable.  But my poor baby kept begging and crying for “mek mek” and kept putting her hand inside my blouse and wanted milk.  Good appetite is also another favorable sign.

Baby C is now on IV drips and is ‘nil by mouth’ again for God knows how long.  It’s now a waiting game and I can only pray that very soon, my poor baby can start to drink and eat without puking anymore.  My poor baby has holes all over her hands now, as a result of the IV line (which had to be re-inserted once every few days resulting from swollen hands) over the past 2 weeks.

Oh yes, we were over RM24,000 poorer when we left the hospital yesterday and God knows how much the bill will cost this time. 

Baby C’s Post Surgery – Day 4

My sweetie-pie had her first post-surgery hair wash yesterday. I could no longer stand the amount of vomit on her hair and asked the nurses to give her a good hair wash when they gave her her usual morning sponge after the surgeon had changed the dressing for the wound. As usual, this fler hates hair washes… but didn’t have much strength to struggle nor to wail.


The hair wash was done on the bed in the treatment room, in a round basin filled with water. The nurses used a special fragrance-free antibacterial shampoo to wash her hair and sponge her body.  After the hair wash, she was given a good hair dry.

Yesterday, Baby C pulled off the nasal gastric tube from her nose. The doctor laughed when we told him that coz he too had the intention of removing the tube earlier and said that babies seem to know when something doesn’t need to be hanging from their body anymore. 

Towards the afternoon yesterday, I noticed that Baby C’s right hand was a tad puffy. I told the doctor and he ordered that the IV line be removed again. Baby C was then brought to the treatment room where our doctor searched for a vein and inserted the IV line into the reverse side of her elbow (what part is this called?). In less than a week, my sweetie-pie has had her IV line inserted thrice. According to our doctor, Baby C didn’t wail or struggle when she was being poked. I guess all the vomiting and retching felt way more terrible than the pain caused by the needle or from her wound. Haih, poor poor baby….

Baby C managed to drink some breastmilk yesterday but towards the evening, she puked after her feeds.  The Sister wanted to insert the nasal gastric tube back but I objected. The Sister then called the doctor on the phone to get clearance and the doctor said that there wasn’t any necessity to put the tube back. So you see, motherly instinct is always right and the nurses may not always be right.

Baby C’s overall condition has improved but she is still having quite a gassy, queasy and bloated tummy.  Her poop is also watery and the color…. you’ll be shocked to see the color of her poop…. it’s dark green, almost black, like squid ink, eewww!  But the doctor said it’s ok.  The dark greenish poop is caused by lack of food and how the bile functions (dont’t really know how to explain this).

Up next…. An X-Ray machine was wheeled into our room this morning.

Baby C’s Post Surgery – Day 3

Friday, 8 May 09 marked the 3rd day of Baby C’s post surgery day. On the 2nd day post surgery, I noticed that her left hand (i.e. the hand which had the IV line on) was a tad puffy. I thought it was just the baby fat on her hand, like lotus roots. However, the next day, the lotus root hand ballooned up. I told the surgeon and he ordered that the IV line be removed… and another line be fixed… on her right hand this time. Poor poor baby, had to endure further torture! My poor baby was so weak (from all the puking and not having eaten or drank anything for 4 days) that all that she could muster was a feeble kitten-like cry when the doctor poked her hand.


Baby C’s puffed up left hand.

Baby C – Day 2 Post Surgery

My sweetie-pie felt a tad better last night as she no longer had high fever (albeit still having low-grade fever) and no more every half-hourly bouts of puking. She had the mood to play with her toys but still, there wasn’t a smile on her cute little drained out face. She is going through so much pain and discomfort that nothing, absolutely nothing can make her smile…. and that’s really making my heart ache. I really wonder when I can ever see my sweetie-pie smile at me and call me “meh meh” again.

BTW, I got a shock this afternoon when I was told to pay a further RM9k more in deposit as the current bill has already reached close to RM14k and the original amount deposited earlier is insufficient to cover the interim bill! Looks like the total bill will reach RM20k when we are discharged next week!! But it’s ok, if this surgery can save our sweetie-pie, we will do all that we can to save her… by hook or by crook.

Baby C’s Post Surgery

Hi peeps, just a quick update on my sweetie-pie, before she wakes up or pukes again. 

Baby C was carried by me into the OT at about 8:30am on Tuesday.  I was with her in the OT room and witnessed the prepation of the surgery and only left when the anesthesiologist had administered the GA.  The GA worked pretty fast and within seconds after administering, she completely knocked out.  I then left her on the OT table and leaving her behind was a very tough thing to do.

I was told that the surgery will take about 2.5 hours but it took longer than that coz we were told by the surgeon that Baby C’s problem was really complicated and hard to fix!  She was only wheeled out of the OT at about 1:30pm, i.e. after 5 hours.  That 5 hours was the longest 5 hours of my life.  We were told by the surgeon that baby’s right duplex ureters were badly dilated and stuck to each other.  The surgeon had to do quite a handful of cutting, reconstruction, drainage, stretching, reimplantation and stitching up.  Nonetheless, he assured us that the surgery went well.

Post surgery was bad.  Baby C had high fever since Tuesday and I was really worried.  Thank God, her temperature came down to 37ish degress Celsius this morning.  The first night post surgery, she kept fussing and crying as I think she felt pain and had some bladder spasms.  The 2nd night post surgery (which was last night), she puked the whole night.  Since she ate or drank nothing, she could only puke out yellow bile liquid and lots of phelgm (which is one of the side effects of a major surgery).  Today, she even puked ‘coffee ground’, i.e. vomit which looks brownish and reddish and is a mixture of yellow bile liquid and stains of blood.  She has not been drinking and has been puking and my poor baby is so terribly weak, so weak that she could not even muster a cry whenever the doctor and nurses did anything to her.  She looks really listless and weak and my heart aches to see her like this. 

When the surgeon check on baby this morning, he said that her tummy is really bloated (full of gas). Since she’s throwing up non-stop, he inserted a nasal gastric tube through her nose to aspirate out the gas. The tube can also be used to feed her oral meds and tube feeding. The surgeon also ordered that she be given Vamin Glucose drips, which is drips consisting of vitamins to give her some strength. My poor baby looks so sick now, with 4 tubes hanging from her tummy, 1 tube on her hand and 1 tube together with a bottle on her nose.

I forgot to mention that everyone in our family is also down and out. On the day we arrived in Penang, hubby was admitted to the hospital for high fever, throat infection and flu. The next day, my mum, my maid and I got bitten by the virus. All of us had high fever, except for my maid who only has a cough. But I don’t have the luxury of having complete rest and sleept.  It has been terrible for me.  I felt cold and shivered when my temp shot up to 39.5 degrees Celsius.  Also had a throbbing head, a backache that felt like my back was going to break when I stood, sat or walked and bodyache. I felt so weak that I didn’t have the mood and strength for anything but to sleep.  Not wanting to spread my virus to my baby, I quickly went to the A&E Dept and consulted the MO.  The consultation and meds cost me a whopping RM208!

Thank you to those who have prayed for my baby.  I really appreciate your kind thoughts and prayers.  Please do continue to pray for Baby C to have a really speedy recovery without anymore puking, without any infection and an almost pain-free recovery and a 100% successful surgery (i.e. no more kidney reflux and no more UTI attacks).

The 3 urine bags hanging from her tummy through the incision and 1 pump-like plastic bottle hanging from the belly button (I think).