Indonesia, we are coming home !

Before surgery, doctors allow us to go home to Bandung , our 

dusty yet lovely hometown.Only advise us to take good care of Sam as he is still using trachea tube.Practise a proper hygiene.WASH HAND -WASH HAND - WASH HAND.We use mask whenever we re near him. Avoid crowds, sick people (or just recovered people ) avoid dust and dirt,bacteria and virus....Well,before we turn into ' hygiene freak', we better try our best and rely on our Good Lord FULL protection on Sam.We ll stay in our relative house temporarily.Again, for the sake of hygiene.

 

We need to unsubscribe the internet here, so no more update this week.Before that,Many many thanks to all brothers and sisters in Christ, all dear friends in Singapore who always support and help us.To brothers and sisters of IE Church- GII ,GKKKB, New Destiny Fellowship International Church,GISI, NBC Church,Forerunner fellowship,Healing Ministry at Lucky Plaza,Lighthouse Church,Covenant Evangelical Free Church,and many more.

 

To JC Foundation, Bu Indah ( Prof Chia ) & friends .Friends from HSBC, UBS, DBS,RBS,Fullerton,Standard Chartered. To A Prof Allen Yeoh with the ICU team -Dr.Koh Pei Lin - Dr.Nicola Ngiam. A Prof Prabha and Prof Lenny Tan.Prof Lok ,A Prof Lynne Lim,Dr.Cindy and Dr.Terence Lim.A Prof Marion Aw and all wards doctors.Ms.Teo Ling Nah & Ms.Sharmaine.Last but not least, therapist ;Ms.Karen and Ms.Alicia who take good care of Sam.To many more friends who always support, pray and help us.

 

We cannot survive without you guys .The whole last year was dark,horrible,unthinkable crazy life yet we found God provision and miracle upon miracle.Immanuel.Thank you for being part of His helping hands sustaining Sam and our lives.

 

To all dear friends who s having the same struggle.Thank you for sharing the tears and joys.We always pray and support one another.We ve been good fighters,right ? God has win the battle for us.The healing has been ours.We'll never let it go. Just stick to it,will ya ?By His stripes,our childrens ;Christ,Jessica,Nelsen,Steve,Yasko,Joshua,Yola,Alex,Jason,Theo have been healed.Praise Jesus

 

How is Sam ? He smile and laugh a lot.Sometimes we can hear his voice.little manja but still a good boy.Now, 9.7 kg.Still learn to roll over and sit down.Really need to figure out how to make him catch up the development faster.

 

Our flight will be at 16 September morning.Finally, after more than 1 year in Singapore (including couple months camping in freezing cold rooms of hospital ), we can go back home ! Mixed feelings.Dont know what to expect back there.A taste of normal life,I guess.Cant wait to see Peter , Sam's older brother.Miss you,dear ! And having all delicious snacks of Indonesia ;batagor,baso tahu ,cendol,nasi kuning, pempek, gemblong- serabi,martabak,hot sekoteng,and off course best of the best : KERUPUK  

 

Picture 1 : big laugh

Picture 2 : Sam's favourite : bite the towel

Surgery Schedule -Not this week !

Finally we met the surgeon for the gastrotomy and fandoplication surgery. Thought he will schedule the surgery either this week or next week so we may go back to Indonesia mid September.Eagerly we wait for what the surgeon said.To our surprise he schedule it  November.Two months later !

 "There will be a good surgeon come from US", he explained. He is expert for doing surgery with robot, a new technology of surgery the hospital is exploring.( We heard it comes with the prospect of less risk, less pain and speedy recovery).He added ,"You dont have to worry , he wont charge you anything." Surely it is the professional fee he waive. Praise Jesus.Whew.

Then there I go to pre -admission consultation room. Its a room where they advice us what to prepare for staying in hospital.A nurse came up and talk about the deposit. Hospital need it on 8 November,one day before the surgery : SGD 19,000.

Taking breath out of me.Why is it so expensive ? I asked.

Our outstanding already more than twenty thn. It ll make the total bill into fourty thousands need to be paid.Nicely the nurse explained on the standard procedure of hospital.It is bill estimation.After discharge, we will get the real number of bill. May be less, may be more. Depend on how many days of stayings,procedures done,etc. 

We just wondering of what God plan for Sam now.Could this mean Sam not yet ready for the surgery ? Could it be another God;s miracle come in a new way ? May be Sam's voice suddenly come out normally ( means the vocal cords already move well ) so we can take out the trakea tube from his neck and then take out the feeding tube - then lead to no surgery needed anymore ? So many "may be" in our minds.

 

Only one thing sure :by His stripes,Sam has been healed.

Doctor Check up - Cardiologist

Sam spent half last week for doctor's check up.It s a marathon.Our Cardiologist found from echocardiogram that the heart condition is much better and its pressure already normal. He decided to stop diuretic medications at all ! Instead of 5 medicines, now its only 3 medicines ;propanolol,ranitidine and tyroxine.Hurray !

 

Tyroid test : turn out to be normal even on a reduced dosage of tyroxine.

Liver Ultrasound : making a good progress.Propanolol cut down into half dosage, to 1.5 mg/kg/day.

We re on the track of 'getting rid off ' medications.Really hope that when the time comes for oral feeding one day, it will be the day of  Sam s having nice and delicious foods; chicken soup,orange juice,apple pie... and no bitter taste of medicines.Gee, remember how terrible it was when our mom / dad force us to drink medications when we were children ?

 

ENT Doctor:"I am happy for you"

We re trying to found out what caused Sam's vocal cord not moving. So many things happened to the boy and so many possibilities ; brain damage due to lack of oxygen when he turned blue several times, something pressed on nerves or muscle besides the vocal cord,chemotherapy though small .dose,heart problems.So they did MRI on brain, echo on his neck. Good news : nothing wrong.

Finally doctor did airway scope again.A simple one without anesthesia :

"Minimum movement on the right side of vocal cord."she claimed gladly.

There are acidic reflux ( doctor term of vomit ) seen that makes the airway swollen.Hopefully after doing surgery on his tummy to stop the vomit, the vocal cords move stronger."I am happy for you."the doctor said.

Now, we feel enthusiastic on the surgery

 New Hope on the way !

 

Button on the tummy ?

Stay 1 night at hospital.The test of vomit ( ph Test and Barium test ) show that Sam has moderate level of reflux from his stomach.13.6% reflux. So doctor would like to do fando ( tightening the upper way of stomach ) and put the button on his tummy.Whether it will be done by key hole surgery or by open surgery we dont know yet.The cost is also one of the concern.This week there will be serial check up on Sam's heart, ENT and later his tyroid hormone.

Anyway, looking back at how Sam s progress until now,we are really grateful. So many miracles God has been doing. By faith,we believe God has healed Sam completely-including his airway and vocal cord.We get our spirit back.Cia you Sam ! Plan to go back home to Indonesia next September.

 

New Issue - The journey not end yet

Airway scope at 18 August.Early morning we rushed to Day Surgery Centre and admit to hospital.Sam was put on sleep and the scope begin.We waited outside nervously.Around 10 am the ENT doctor came. "The vocal cords is not moving at all."frankly she said. "It means cannot take out the tube.May be we need to wait.6 months or 1 year and see how...The words tearing out our hope. Bilateral vocal cord palsy.

 

How come the vocal cords was moving in June and now not moving ?Not sure.The different scope procedure for vocal cord may affect.Anyway, they really sure this time its not moving.

 

Such a great mistery human body is.Vocal cords movement enable us to talk. The movement also enable us to breathe even in such a distress condition of flu or cough when there s much muccus in our airway.It also prevent foods or drinks to enter lungs when we swallow.

 

So, it means cannot breathe and cannot swallow safely.

Sam need to keep on trachea tube until the vocal cord move again, by miracle.An easy thing for God we need to ask for.

 

While waiting Sam cannot eat orally.But using feeding tube is risky for long period.So  doctor want to do gastrotomy ; a surgery to put a hole on Sam's tummy.The feeding will be given from the tube there.

 

As Sam sometimes vomit,need to check whether there is a bad reflux problem.Next monday - 24 August they will do the test.Stay in hospital again.If its bad , it means they need to do surgery to tightening the above part of abdomen.Fandoplication.

 

They did MRI on brain yesterday to check why the vocal cord not moving.Praise God, the brain is normal.Next week need to check the heart to see whether the culprit is there.Anyway,we are facing uncertainty now.Terribly sad

 

Thank you for the support and prayer. Here is update of Samuel.

D Day - 3

Three more days to wait for decanulation process.All of us are quite nervous yet excited.We re sorry that we could not allow visitors yet to see Sam.We stop Ranitidine ( reflux medication ) to check whether Sam need to be test whether there s a real reflux problem that makes him vomit.The medication itself reduce stomach acid to avoid baby get irritation when vomit. So we really pray and work hard - do anything - to prevent Sam from vommiting.We believe no reflux problem.But vomit due to suctioning -well, trachea related problem - sometimes happened but not as frequent as before.Again,we claim, no more vomit... Sam.Dont worry.Pray and ask.Believe on His Words,Speak of His Words,We ve received His deliverence from tubes ,machines,disease and weaknesses.Hold your breath,we 'll update on D Day : 18 August

Dear friends, may we have a pray request this week ?

For airway scope at 18 August, may God guide doctors and nurses hands to do the anesthesia and scope.No bleeding episode, please.Sam to be ready both his airways and his body to be ready when he wake up to start breathing 100% from his nose again,without using trachea hole on his troat. 

Many Thanks ...