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.