We came through second embolisation victorious! Phew, what a relief! This time we spent almost 2 weeks (the last time almost 3 weeks) in Paeds ICU, NUH Singapore. Thanks to the staff of PICU! You guys are marvellous! I must say that they are now prepared for our little guy!
Although, I had hoped for it to be done and settled over in December last year, and not wait till Adel's spleen gotten bigger and him more breathless. Well, at least now the doctors know to take me seriously and never to doubt a mother's instinct!
For you guys whom have just stumbled on this blog or just taking a peek, I'll do a quick summary of Adel's medical condition. Adel's Beta-Thal Major, Chronic Lung Disease with pulmonary hypertension. Adel had had multiple heart surgeries at birth which exacerbated his left lung which is congenitally an abnormal left lung. Currently he's on home CPAP and home oxygen also suspected of storage-disease which is causing him to have enlarged spleen and liver (therefore chronic anemia). Gaucher has been ruled out. We may never get to find out what storage disease or even know there is a name to it. Anyway, we're just happy as it is, as long as we get to keep him in our lives.
Ever since his 1st embolisation, he gained 3 kgs, fed on his own, walked and talked like never before. Our target for the next 9 months or so (which was the length of time from his 1st embolisation to his 2nd) is to let him grow another 3 kgs, get out of this CPAP and home oxygen so he can be fit to tackle his Thalasemia or whatever storage disease. God willing, we'll achieve it.
