Off ventilator by the grace of GOD

Finally, Sam is totally off the BIPAP and oxigen machine.Praise Jesus, by His grace He enable Sam to be out of those machines just a week before the rental period expired.The supplier gave us a call asked whether we would like to buy the machine or extend the rental.Joyfully we told him that we would return it instead ! Coupledays ago, the sensor of the oximeter ( machine to monitor oxigen level and heartbeat ) suddenly became error.The thought of buying again the sensor which cost SGD 240 is quite a burden .Yet we ve been tired hearing the alarming sound of it all day long when Sam was using it.Unexpectedly , when we called the hospital informing ourrespiratory therapist, they told us to return it also to the supplier.So, Sam is out of BIPAP,oxigen , humidifier and oximeter this week. How great our living GOD is. Furthermore we pray that Sam can be decanulated soon where the trachea tube be taken out from Sam's neck. It means Sam will start to breath from his nose again and the hole on his neck can be closed.

Vomit episode

Sam still vomit occasionally. Though Sam himself seemed to be fine with it as he often smile after throwing out his milk-sometimes secretions.Doctor suspect constipation as one of the cause and give Sam lactose to soften his stool. This may reduce the gas in his tummy. But looks like it cannot really solve the problem.We ve been trying many things concerning the feeding and secretion suctioning but it still happened.Now we are considering to change the milk and ask doctor whether it is necessary to re check thefeeding tube position.

 

Picture :Reading a book while practising to breath without machines  

VOMIT or BURP ?

These couple days Sam is vomiting his milk several times.Doctor  suspect that Sam cannot tolerate the slow bolus feeding of 50 ml where we pour down the milk within several minutes into the feeding tube. Doctor told us to cut back his milk via the slow bolus and on the other hand increase the feeding via machine.The machine enable the milk to be given to Sam very slowly and continuously. But even after we tried that, he still vomit couple times.Second suspect of the culprit : bloating tummy & the secretion in the airway. Windy weather ,that's all.After giving him red onion water , Sam seemed settle down.Tumbs up to traditional way !

SAM's HORMONE

At 14 April, doctor did another blood test on Sam.His liver panel test show the liver function remains good. While his tyroid ( they test TSH & tyroxine,free ) the growth hormone has become normal . What a good news ! Doctors now increase again his feeding up to 920 ml per day.
 
At hospital they also want to see whether Sam can tolerate breathing without BIPAP machine & even without oxigen.Doctor put him off machines and watch.Well, guess... he still smile and playful after several minutes.His saturation-Oxigen level is swinging up and down as Sam is adjust his breathing but mostly above 93 % which is good. Looks like we are on the right track now. Praise God ! So,we continue practising and weaning him off the machines and even oxygen  
  

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.