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 

Happy Valentine Everyone !

Today Sam is practising to breath with less help from ventilator.They tried to put him 4 hours on CIPAP mode and it seemed fine ! Doctors also mentioning that clinically Sam 's cardia is improved.They plan to have a blood test next Monday.ICU Nurse give him pink balloons for Valentine's day and he seemed to enjoy it ! So, Happy Valentine everyone. Lots of love from Sam to you. XOXO

 

Success Surgery

Yesterday afternoon (from 11am til 6pm) Samuel went to surgery. The purpose of surgery is to tie up all the tiny vessels (not cut as I mentioned earlier) so that hopefully the liver can shrink and Samuel can recover faster. The surgery has succeed. The surgeon said he has done the best he can do, to tie up all the vessels can be tied up. Now we wait and hope the operation is effective to the liver, so no other surgery needed. But if the respon is not effective, then the next step is to the liver-transplantation. We pray (and please support us in prayer) that yesterday surgery is the last surgery, and let only God give the heal to Samuel.

 

Regards,

Richard & Hellen.