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 !