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.