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 ...

"Independence Day"

What a busy day ! Seeing 3 doctors in a day.Blood test - good result but no change in medication dosage. How we want to get rid all those medicines.

Liver - smaller and soft.Need to do next Doppler ultrasound in September.

ENT ( THT in bahasa ) - they did a scope to check the vocal cord.Doctor told us both side of the vocal cord are moving but the left side seem weaker.But to know whether it affect Sam's voice , need to wait until Sam is free of trachea tube when we can hear Sam's voice.

Good news - They schedule Sam to do the airway scope at 11 August 2009 .Still need to put Sam under general anesthesia. They want to check whether the airway area just above the trachea tube has already opened.( it was 80 % collapse last time they did the scope ).Should it still not healed yet, they want to do implant surgery to take a part of Sam's body- we don't know from where - and put it into his airway. Such a scary and unnecessary surgery !

 We believe Sam's airway has already perfectly 100 % opened.

Between Singapore Independence Day ( 9 August ) and Indonesia Independence Day ( 17 August ), 11 August will be an "Independence Day" for Sam . Free from all tubes and machines.Praise God !

 

The First Birthday Party

Sam should having his birthday at Forerunner fellowship this week - thank you for the kind offer of having it there - but due to Sam;s still using the trachea ( we isolate him while using the trachea ), sadly we reject their kindness and prefer to celebrate it in the modest way : a cake at home.

But it turn out to be really special. IEC Youth members were coming to our place on this special day, bringing achocolate birthday cake for Samuel.To our surprise, they even bring food and drinks to celebrate the day .Never thought of having Sam's birthday party this great before in Singapore! Sam looks happy and smile a lot.Though we only can take him out from his room for a minute-photo session, he seemed to enjoy it. Thank you everybody !

 

Medical Reference - 20 June 2009

Just got email from Children'sHospital Boston asking about Sam's progress.They do research on Infantile or Hepatic Hemangioendothelioma.We'll need to provide them with Sam's regular medical records.Hope it will help other babies in the future. Last year they review Samuel's case in their weekly conference and provide our doctors with their opinion and suggestion.Thank you to Dr.Giannoula Lakka Klement -Vascular Anomalies Centre ( website :www.children'shospital.org ) who offer us that chance of getting second opinion for free.We also greatly thanks to Alex whose daughter also had similar disease.Alex refer us to Dr.Klement on our support group athemangioendothelioma@yahoogroups.com Joining support groups help us a lot dealing with this HHE

 

Bloody episode

Sam was admitted to hospital at 1 June 2009. We re so excited and anxious. Unfortunately doctor decided not to take out his trachea tube now since they found out that the airway area just above the trachea was significantly collapsed on the left side.Other area ( including area that is compressed by the once enlarged heart ) is perfectly opened.Doctor explained that it may caused by the prolong use of the trachea plus the trachea size  ( size 5.0-shiley ) which is too big for Sam.So ironic , the trachea could not be taken out that time because of the trachea itself.

So, doctor change the trachea tube to a smaller size tube. Normally it will take more than 1 month for the collapse airway to heal.We need to decide when will Sam go through the same procedure of airway scope as it need to be done under general anesthesia.

We need to pray first asking our good Lord as His timing is always perfect.He knows when will be the perfect time for Sam.Tentatively it will be in August or September.

 

They also did a scope to look at the voice cord and found that the left side was not moving well. It means they could not take out the feeding tube yet.For this kind of scope ( so many kind of scope ! ) we need to wait until July. Meanwhile Sam couldn't take anything orally even for practising.

 

We re quite sad during this admission as many things happened to Sam ;the difficult times Sam was going through when they set his IV plug made Sam struggling and crying.Set IV plug for patient who s been staying in hospital for long time usually very difficult since they have been poked many many times making the feasible vein so difficult to find.This time is a night mare.Many trials with needle, hours of hours crying-up to 1.30 am !, swelling leg, and finally they put Sam to sleep with gas.Then they set the IV plug on his neck.

 

Minor bleeding after the scope procedure which cause his mouth full of blood.The blood streak also come out from his neck. Though this is normal, it is painful to see Sam on this "bloody" episode.Well, At least we re one step closer to "free of tubes" episode 

 

Sam's heart is still slightly dilluted but his cardiac failure is resolved.Two lessions on his liver were seen significantly enlarged but we believe -as our surgeon said it may - that it is the 'dying' tumor change into fibrosis.

 

God is still in control.Sam has been perfectly healed by His word and power.In His time He will proof it.

Delay

Sam decannulation is pending unexpectedly due to full room in ICU. When doctor told us to wait at least one week, we feel disappointed and confused.The schedule was so perfect according to our prayer,and it is sometime unbearable seeing Sam going through the uncomfortable procedures of suctioning and trachea maintenance which sometimes end up with Sam vomit or cry.

 

But still God show us that He is the one who is in control. And His timing is the absolutely perfect time 

So, we are waiting for the confirmed schedule.Tentatively it will be 1 June for admission and 2 June for the procedure.

"Trust Me" that is what God is saying.We do.

Prayer & trusting God- they do change things !

Samuel will be admitted to NUH again at 25 May 2009.Tuesday morning, doctors will do the airway scope in operating theatre. Sam will be under general anesthesia during the procedure.Doctor will find out that Sam's airway is open and in very good condition. After Sam gain his conscious back , they will take out the trachea tube. By the power of Lord Jesus, the creator, Sam will breath comfortably through his nose again. He will be staying in HD ( ICU place ) after that for a couple days.

 

Sam will be free from all tubes as after the above procedure, doctor will take out his feeding tube. After 9 months out of oral feeding, finally Sam will get again the enjoyment of eating and drinking orally : )  About the feeding tube , we have not discuss with doctor yet, but we are praying and believing it will happened soon after the above procedure.

Thank you for all your prayers.Your prayers really works. 

 

Blessings in disguise

Sam was having cough last week. It is terrible.The cough was so strong he often vomit the secretion.The secretion was yellowish and sometimes pinkish due to irritation for we need to do a lot of suctioning.It was really sad to see Sam in such condition.He looked so discomfort and tired.

We called doctor informing the condition asking whether we need to give him Bisolvon or any medication.

Guess what ? The doctor told us that Sam can cough out his secretion is a sign that he does not need trachea tube anymore ! They can decannulate him ! Of course we need to wait until Sam is recovered from his cough.Well, we believe this is how God fullfill His promise at Mark 11 : 22 - 25. We believe Sam is recovered this week so next week he will be ready for this process.

 

 

Off ventilator by the grace of GOD

Finally, Sam is totally off the BIPAP and oxigen machine.Praise Jesus, by His grace He enable Sam to be out of those machines just a week before the rental period expired.The supplier gave us a call asked whether we would like to buy the machine or extend the rental.Joyfully we told him that we would return it instead ! Coupledays ago, the sensor of the oximeter ( machine to monitor oxigen level and heartbeat ) suddenly became error.The thought of buying again the sensor which cost SGD 240 is quite a burden .Yet we ve been tired hearing the alarming sound of it all day long when Sam was using it.Unexpectedly , when we called the hospital informing ourrespiratory therapist, they told us to return it also to the supplier.So, Sam is out of BIPAP,oxigen , humidifier and oximeter this week. How great our living GOD is. Furthermore we pray that Sam can be decanulated soon where the trachea tube be taken out from Sam's neck. It means Sam will start to breath from his nose again and the hole on his neck can be closed.

Vomit episode

Sam still vomit occasionally. Though Sam himself seemed to be fine with it as he often smile after throwing out his milk-sometimes secretions.Doctor suspect constipation as one of the cause and give Sam lactose to soften his stool. This may reduce the gas in his tummy. But looks like it cannot really solve the problem.We ve been trying many things concerning the feeding and secretion suctioning but it still happened.Now we are considering to change the milk and ask doctor whether it is necessary to re check thefeeding tube position.

 

Picture :Reading a book while practising to breath without machines  

VOMIT or BURP ?

These couple days Sam is vomiting his milk several times.Doctor  suspect that Sam cannot tolerate the slow bolus feeding of 50 ml where we pour down the milk within several minutes into the feeding tube. Doctor told us to cut back his milk via the slow bolus and on the other hand increase the feeding via machine.The machine enable the milk to be given to Sam very slowly and continuously. But even after we tried that, he still vomit couple times.Second suspect of the culprit : bloating tummy & the secretion in the airway. Windy weather ,that's all.After giving him red onion water , Sam seemed settle down.Tumbs up to traditional way !

SAM's HORMONE

At 14 April, doctor did another blood test on Sam.His liver panel test show the liver function remains good. While his tyroid ( they test TSH & tyroxine,free ) the growth hormone has become normal . What a good news ! Doctors now increase again his feeding up to 920 ml per day.
 
At hospital they also want to see whether Sam can tolerate breathing without BIPAP machine & even without oxigen.Doctor put him off machines and watch.Well, guess... he still smile and playful after several minutes.His saturation-Oxigen level is swinging up and down as Sam is adjust his breathing but mostly above 93 % which is good. Looks like we are on the right track now. Praise God ! So,we continue practising and weaning him off the machines and even oxygen  
  

MORE MILK FOR HUNGRY SAM

Sam's latest Ultrasound on his liver - done at 13 March - show that there are still some abnormal blood vessels.Doctors told us that it is expected to regress more and disappear as Sam is growing up. Though the liver size is still bigger than normal, Sam is now more tolerate with more feeding. On 27 March as Sam is becoming 9 months old baby, his weigh is still 7.18 kg so doctor decided to give him more concentrate milk.From 540 ml / day to 720 ml / day. Since we need to slowly increase  the feeding, we limit the breathing practising time to 9 hours a day until he can tolerate the feeding. 

End of March -once he was breathless, breath fast with O shape-mouth. Normally ,Sam's breathing is faster than other babies but that time it s even faster ! He seemed quite tired , but Thanks God, after we put him back on BIPAP machine and he vomitted some secretion, his breath was better. He seemed well then. Since now he is recovering from the disease, we believe his breathing will be normal with practising and praying.
 
Last week we saw speech teraphist to learn how to stimulate his mouth and make him ready for oral feeding.Sam has never drink anything orally since he was 1 month old, so up to now  practically Sam is  8 months out of oral feeding. Doctors not yet allow him to get oral feeding at this moment but we need to keep Sam ready for it.Thank you for friends who gave us a teething toy. It s really useful !
 

Picture 1 : Breath without BIPAP-still with oxygen theraphy.
Picture 2 : Smile...

Machines & Tubes

Samuel has been discharged again from hospital at 3 March 2009.Currently Sam still stay in Singapore while weaning from all machines we rent.FYI, JC Foundation, in Singapore by their generousity help us paying the rental fee of those machines until 13 May 2009. We pray Sam will be off those machines before the date.
 
Currently Sam is practising to breath with Oxigen ( without BIPAP ) for 1 hour a day. We plan to slowly increase the practising time until he may breath comfortably without BIPAP for the whole day.The weaning process itself will need Sam to be staying in hospital again  but we would pray and practising first until Sam is ready.As Sam is using BIPAP, Oxigen concentrator, humidifier, feeding machine and suction machine, we realize that there is still a journey to go for little Sam but we believe that this time the journey would not be so difficult. Our friend said, like riding a roller coaster, we do hope that there will be no more sliding down.

On 11 & 16 March, accidently Sam pulled out his feeding tube. A big smile on his face ! He looked so relieve and happy.Unfortunately for Sam , we need to put back the tube in hospital.Now we put mitten on his hands as he keep trying to pull out the tube.

Picture 1 : Sam is learning to lift his head.Many things to catch up, little Sam ! 

Picture 2: Sam s tummy is much smaller.The short and long line on his tummy are the surgery cuts.

No BIG Heart

After 3 days out of hospital, Sam admit back to hospital due to high fever & vomit. Docs pretty sure that its viral with a kind of flu sympton. God works in all things to bring goodness for those who love him. This time God show doctors that Sam's heart much smaller & they cut down the medication. The tumor used to consume his blood cells, but not anymore! For the first time, his Hb is 14. We believe no more tumor. SAM is healed. Now he is staying in ICU, room no. 9. But surely, he'll be coming home soon.

DISCHARGE

It is great to be out of hospital! Sam start slow bolus feeding milk was given every 3 hours via tube. It is one step closer to normal feed by mouth. His liver is shrinking & his haemoglobin becoming normal. PRAISE GOD.

A BETTER HEART NOW

Today, Samuel was went through echocardiogram to check on his heart. They told us that the pressure inside the heart is almost normal now.The Digoxin ( medication for the heart failure ) will not be necessary two / three weeks later. They expect his 'BIG' heart would become normal in size again later on. 

 

Yesterday they did another bronchoscope and found that the airways are also getting better ! They tried to take out the BIPAP (a portable breathing machine ) and gave a try for Sam to breath on his own with oxigen support only.But after half an hour, sadly, they put him back on BIPAP due to him being breathless. 

 

They said they probably need to wait for months until Sam's airway muscles becoming stiff enough to keep the airways open so they may take him off the BIPAP. Our God is in control of everything. Surely, we pray and believe that Sam will be free of any machines sooner ! In fact, we believe that Sam already can breath on his own.

 

And here is another good news : Sam will be discharged end of this week ! Wow, what a good God we have !

Sam will need to come back to ward 46 - in front of PICU which is 46 A - every week for check up. 

( Due to medical concerns, Sam will see doctors in clinic only after he is free of BIPAP )

 

Sam make such a good progress recently that it also makes our hearts feel much better