31 July 2010
Sam looks fine and did a great job on the theraphy.Once he can lift his feet high enough to climb the stairs.Smile on his face.
1 August 2010
Early in the morning Sam got diarrhea.Around 10 am our dear friend-doctor came.Administering antibiotic,nifural and ibuprofen.Looks like Sam got mild fever.Sam looks discomfort and weak.It is a normal things during diarrhea.We keep giving him Renalit to supply his body.
At the afternoon,Sam start to cry and cry.He struggle everytime we carry him .Looks like he feels some pain.We try to carry or rub him gently or anything, but make no difference.He keep crying.We found out that his legs feels cold.His lips seemed not good.
After consulting with our doctor,we brought Sam to Emergency in RS.Boromeus.Our pediatrict is there.It took hours to put him on IV as before.But this time it was even more difficult. They order us to feed him nothing ( though we gave him few renalit through his G tube ).The dehidration seemed worse.Pray and pray and pray then finally IV plug set on his right hand.
Shockly we found out later that night that the IV plug was not good enough.They told us they have try anything but seemed that his blood vessels were collapse due to lack of fluid.They will try to set IV on his head.Surely we agree as this is an emergency.They allow us to gave him 100 ml renalit.Thank God they sucessfully set the IV plug,again.Thank you for the nurse pray and hard try.
Sam was so restless and his lips colour was bluis.High fever and breathless.Heartbeat frequency was high.Couple times he look at us and give sign with his lips that he was thirsty.Sadly could not give him anything.
2 August 2010
In the morning Sam looks better.Saturation ( oxigen level ) was 98 to 100 %.At 11 am they let us to feed him soya milk mix with renalit.He seemed more wake up then last night.Though they told us several hours ago Sam had a seizure due to high fever.
In the afternoon,things changed.His awareness was low and his temperature climb higher.41 Celcius.We were shocked.His lips so dry and his body so cold outside.
That day ICU doctor told us that things looks not good.We have a strange feeling that this time God may take him away.It was so different.We say farewell to Sam and apologize for any wrongs we did.That God will take care of him and we talk about relatives he will meet in heaven.
That night God took him to heaven.We cry and pray and sing songs.
Dear all,
We thank you for all your support,pray and help.Sam know that you loves him so much.As parents we realize that Sam had been a great blessings for us.We are blessed that God trusted him under our care for this 2 years. We laugh and cry together tough we cannot feel his pain.Finally God took away his sufferings, replace his body with a new perfect body.
He is now very much happy in our Father's home.
Farewell Sam.We miss you.We miss your smile,we miss your talking eyes.But it is fine.You are under His care and it is more than enough.
Wednesday, August 4, 2010
Blood test for Tyroxine
30 July 2010
We did consult to other ENT doctor last May, Prof.Henry Tan at KK hospital.Surprisingly he offered us to do airway scope for Sam on 21 August 2010 at a course.There will be several ENT 'super- specialist' from Singapore and other countries that will come and check on Sam.It will be free of charge.Joyfully we accept that kind offer as we believe it is God who show us the way of decannulating Sam.We start to prepare everything.Air ticket and blood test.A medical officer came and took the blood.Tyroxine test,FT4 and TsHs.
We did consult to other ENT doctor last May, Prof.Henry Tan at KK hospital.Surprisingly he offered us to do airway scope for Sam on 21 August 2010 at a course.There will be several ENT 'super- specialist' from Singapore and other countries that will come and check on Sam.It will be free of charge.Joyfully we accept that kind offer as we believe it is God who show us the way of decannulating Sam.We start to prepare everything.Air ticket and blood test.A medical officer came and took the blood.Tyroxine test,FT4 and TsHs.
Wednesday, April 28, 2010
Breathtaking incident
Oncologist suggest to see Prof.Henry Tan, a senior ENT in Singapore.Plan to see him on 14 May.
Yesterday Sam just finished his sliding exercise when suddenly his trachea tube was slipped out.We try to put it back in but failed.He has trouble breathing as he s turning so pale.We just thought that we may loose him this time.We pull out the trachea dressing and holder. no time to consider whether the tube is dirty.just try and try.finally can put it back in.Sam s not moving.His head laid back.His lips has no colour.Some push on his chest for simple CPR and back he breath again.PJ.
Yesterday Sam just finished his sliding exercise when suddenly his trachea tube was slipped out.We try to put it back in but failed.He has trouble breathing as he s turning so pale.We just thought that we may loose him this time.We pull out the trachea dressing and holder. no time to consider whether the tube is dirty.just try and try.finally can put it back in.Sam s not moving.His head laid back.His lips has no colour.Some push on his chest for simple CPR and back he breath again.PJ.
Build the muscle
How Sam is doing his exercise.Prob you want to watch this.We do it 3 -4 times a day.Glenn Doman method we try to apply after read some books and see some parents doing the same things.Sam's doing a great job isn't he ?
Monday, March 22, 2010
Home at last - what s next ?
After stay at some relatives, finally we manage to go back home.Sam is doing fine.He grows stronger everyday.His hands movement is better controlled.Left hand better than the right hand.He can grab toys. So are his legs, they are stronger now.
We re so glad that now he show some understandings on some words. He will makes sound with his lips when he do ' kiss bye'. He enjoy when he learns to express himself. And we enjoy to see him becoming more and more a normal little boy.
Though having a late development, suspected of mild brain injured, our neurologist said, strongly we believe Sam is a normal clever little boy. Perhaps a 'premature' boy now but he will catch up
Praise God, the horrible Hemangioma already resolved.No more problems to his organs.All are fine.Just to do regular check up once a year for medical standard procedure.
We stumble on the trachea tube.The last diagnosed in Jan 2010 was laryngomalacia ( soft collapse airways ) subglottic stenosis ( one area of airways become narrow ) bilateral vocal cord paralysis ( no movement of vocal cords ) .Feel confused of the medical term ? So were we.
Here is some info from internet we found:
Not much information,some children get the diagnose since they were born, some get it because of medical treatment they received.
Some children can overcome it when they grow older .somehow they just recovered spontaneously. Some children not. Some doctors do some surgery to fix it, some prefer not to.
Well, if you need information about trachea things on children,you may check it on www.trachkid.com .
Btw, our ENT suggest to do airway reconstruction surgery but then they found that Sam has aspiration. If you wonder of what is this - another strange word,here it is :
Aspiration mean the patient get food or salive get into their lungs in stead of to their stomach. Last january Sam got the test . They gave him a blue milk ( it is really blue ) through his mouth try to see whether Sam can swallow. We cuddle him, sing a song, try anything to calm him since he was so nervous with food in his mouth.Imagine you not eat anything through your mouth for more than a year then now you need to show that you can swallow food in front of a stranger.Dont think as an adult who already understand how tasteful FOOD is.
Sam taste the milk,he looks hesitate but then his mouth was moving. He can swallow !. Before we become too happy, Sam cough and cough.We do suctioning through his trachea tube.There it is, a thread of blue milk come out.
I feel I m almost cry that time.
THAT IS aspiration. That bad ugly aspiration.
No wonder why our moms told us not to talk when we eat. It may lead to aspiration.Aspiration may lead to lungs infection.
So, Doctor said even a surgery cannot be done now to reconstruct Sam's airway.
We feel that we just come to a dead end.
If the tube have nothing to do with Sam development may be we are more "happy" to have it a bit longer on his neck. But we believe Sam feel it s uncomfortable to learn how to creep and move with something stuck on his neck .He always cry and cry, maybe too afraid his movement will make his tube hit the floor and hurt him.
Are we too much complaining ? If you think we are happy since Sam has recovered from previous sickness. Yes we are.
But it is like we just climb out from one deep hole to fall into another.
Cannot think that our baby recovered from sickness to have a less normal life .It is a big No.
And this is what we always write.
There is a saying of "When God closed the door, He open a window." Now,let s find that window!
Anybody know where we can find second opinion ?In Asia location ?
The two ENT surgeon- expert on airway management- we got from other parents stay in US and Australia. It s seemed beyond our reach.
We re so glad that now he show some understandings on some words. He will makes sound with his lips when he do ' kiss bye'. He enjoy when he learns to express himself. And we enjoy to see him becoming more and more a normal little boy.
Though having a late development, suspected of mild brain injured, our neurologist said, strongly we believe Sam is a normal clever little boy. Perhaps a 'premature' boy now but he will catch up
Praise God, the horrible Hemangioma already resolved.No more problems to his organs.All are fine.Just to do regular check up once a year for medical standard procedure.
We stumble on the trachea tube.The last diagnosed in Jan 2010 was laryngomalacia ( soft collapse airways ) subglottic stenosis ( one area of airways become narrow ) bilateral vocal cord paralysis ( no movement of vocal cords ) .Feel confused of the medical term ? So were we.
Here is some info from internet we found:
Not much information,some children get the diagnose since they were born, some get it because of medical treatment they received.
Some children can overcome it when they grow older .somehow they just recovered spontaneously. Some children not. Some doctors do some surgery to fix it, some prefer not to.
Well, if you need information about trachea things on children,you may check it on www.trachkid.com .
Btw, our ENT suggest to do airway reconstruction surgery but then they found that Sam has aspiration. If you wonder of what is this - another strange word,here it is :
Aspiration mean the patient get food or salive get into their lungs in stead of to their stomach. Last january Sam got the test . They gave him a blue milk ( it is really blue ) through his mouth try to see whether Sam can swallow. We cuddle him, sing a song, try anything to calm him since he was so nervous with food in his mouth.Imagine you not eat anything through your mouth for more than a year then now you need to show that you can swallow food in front of a stranger.Dont think as an adult who already understand how tasteful FOOD is.
Sam taste the milk,he looks hesitate but then his mouth was moving. He can swallow !. Before we become too happy, Sam cough and cough.We do suctioning through his trachea tube.There it is, a thread of blue milk come out.
I feel I m almost cry that time.
THAT IS aspiration. That bad ugly aspiration.
No wonder why our moms told us not to talk when we eat. It may lead to aspiration.Aspiration may lead to lungs infection.
So, Doctor said even a surgery cannot be done now to reconstruct Sam's airway.
We feel that we just come to a dead end.
If the tube have nothing to do with Sam development may be we are more "happy" to have it a bit longer on his neck. But we believe Sam feel it s uncomfortable to learn how to creep and move with something stuck on his neck .He always cry and cry, maybe too afraid his movement will make his tube hit the floor and hurt him.
Are we too much complaining ? If you think we are happy since Sam has recovered from previous sickness. Yes we are.
But it is like we just climb out from one deep hole to fall into another.
Cannot think that our baby recovered from sickness to have a less normal life .It is a big No.
And this is what we always write.
There is a saying of "When God closed the door, He open a window." Now,let s find that window!
Anybody know where we can find second opinion ?In Asia location ?
The two ENT surgeon- expert on airway management- we got from other parents stay in US and Australia. It s seemed beyond our reach.
Tuesday, March 10, 2009
Tuesday, February 3, 2009
Contact
Richard & Hellen Raozen
Jl. Batununggal Mulia II / 18
Bandung - Indonesia
Richard phone : +62 22 7514465 / +62818614405 (Indonesia)
Hellen phone : +65 98078281 (Singapore)
We deleted the donation account of NUH.Thank you for all donations given to help Sam. We ve used it for the medication bill of Sam. Including the gifts on his funeral already paid to National University Hospital.
The rest of the bills and mortgage is our responsibility as parents.As now there is no more urgent need of fund, we grateful to our God who strengthen us to work harder on photo and print business.Believe He will recover everything.
It is our responsibility to explain that no donation was used for other needs other than Samuel's medical and treatment needs.We are now getting back to business using a bank's loan.Thank you to UOB Buana.
We deleted the donation account of NUH.Thank you for all donations given to help Sam. We ve used it for the medication bill of Sam. Including the gifts on his funeral already paid to National University Hospital.
The rest of the bills and mortgage is our responsibility as parents.As now there is no more urgent need of fund, we grateful to our God who strengthen us to work harder on photo and print business.Believe He will recover everything.
It is our responsibility to explain that no donation was used for other needs other than Samuel's medical and treatment needs.We are now getting back to business using a bank's loan.Thank you to UOB Buana.
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