Samuel Ryan Raozen
TrachKid Profile
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For complete biography you may go to www.babysamuel-richardraozen.blogspot.com
Our little Sam spent 7 months in ICU ( 2 weeks in Indonesia and 6.5 weeks in Singapore ) since he was 5 weeks old.Diagnosed with hemangioma he was so skinny with enlarged liver causing him cardiac failure, hypothyroid, anemic and bronchomalacia-airways compressed by enlarged heart. It was a nightmare for us as our little baby turn into a small - skin to the bone baby with bigger and bigger tummy.His cry was weak and hoarse.He was breathless and could not tolerate oral feeding.His liver consumed so much space in his tiny body makes his lungs and stomach compressed. Since he was that 5 weeks old he was intubated for 2 months, ventilator dependent.Tracheostomy when he was 4 months old.
Doctors tried many treatments ; interferon-steroid,vincristine chemotheraphy, 4 times embolizations.None seemed to work.Still we believe God heal him even though we did not know how.
Sam went through 4 times of bradycardia ( heartbeat almost stop due to desaturation ).3 times when he was at home.Thanks to National University Hospital ICU nurse in Singapore who teach us how to do CPR.Besides that there was a time when his heartbeat stopped.After all the panic,CPR and Adrenalin injection, the heartbeat came back.Whew,such a miracle of life !
Finally after staying endless months in ICU one good surgeon call us and suggest to do ligation surgery.They also gave him propanolol to inhibit tumor/hemangioma growth.It works.After surgery the progress was so great. Ventilator was weaned to BIPAP mode.Oxygen to less than 1 liter.Sam can discharged from hospital in 2 weeks.He also can smile for the first time ! It was exactly on Valentine Day, 14 Feb 2009.We just cry, a happy cry.
The disease is resolved.Sam is healed.Praise God.The challenge is now to help Sam recover from the illness.His development is delayed as most of his first year he was laying down.He was weaned off from oxygen,ventilator and feeding pump in May 2009.P J. Such a relief !
As a parent whose child just recovered from such a horrible long time disease, we were so happy that we think this is the end of the pain and trouble.
We would love to see Sam catch up his development so we did some therapy. We want to see him roll,crawl, sit up and even run one day !We would like him to have a happy life without anymore pain.A normal energetic and noisy life with his voice strong and loud.Anyone ask about how Sam s doing we were gladly answered with "He is fine now.He s healed.Only the final step to free him off the tubes.The voice ? Dont worry, you'll hear it once the tube out."
So,we were shocked last June when our ENT doctor told us that his vocal cord was paralysis, his upper airways narrowed 80 %( though his previous bronchomalacia has recovered ) and there s laryngomalacia.Doctor not found what cause all the problems but told us that maybe he had so many problems with treatments and drugs and long time intubation and so on that may create this new problems to his airways.She even said that '1 year deadline' everyone of you familiar with - of spontaneous vocal cord recovery.We re so scared.
Looks like we re just out of one dark deep hole to be fall into another one.So here we are, back to home country, trying to struggle with this trachea things.
Our doctor did many flexible and under anesthesia airways scope but till this January 2010 still saying that not yet can decannulate.There still no way even for airway reconstruction surgery with the current airways condition.
Anyway ,Sam, our strong little boy is growing up. Sam do home based therapy with Glenn Doman methods.Now he can catch toys and kick stronger.He learn to rolland he is put on his tummy many times to help his respiratory stronger.He loves to smile especially in front of camera.Sam also learn to read as it will stimulate him to speak when his vocal cord recovered.Now we often hear his voice when he laugh or cry hard. It is a small "Hi !" or "Ow" but it gives us such a joy. In addition ,He got acupuncture therapy twice a week.
We are now discussing with our ENT what we can do and considering to have a second opinion.Any suggestion for ENT doctors in Asia region ?
We remember there is a saying "When God closed a door, He open a window."
Well, we are searching for one.There is hope for everyone.Never give up.
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- Member for
- 1 year 48 weeks
Location
- Country
- Indonesia
