Nigel Tan
TrachKid Profile
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Nigel Jonathan Tan was born on 27 November 2001. Though full-term, he weighed only 1620 grams, and showed signs of respiratory distress soon after birth. He was diagnosed as having a rare genetic defect in the 8th chromosome, and had major cardiac anomalies like PDA, a constriction in his aorta and several holes in the heart, one of which was quite large and flooded his lungs.
He spent a total of 19 months in ICU, surviving constant ventilation, major cardiothoracic surgery, repeated bouts with nasty hospital bugs like MRSA, pseudomas and kleibseilla. In his second year, he also was found to have hepastoblastoma (a pediatric liver cancer), and needed major liver surgery to remove the tumour and half his liver.
When he was 21 months old, he underwent his tracheotomy. It helped him so much. He breathed a whole lot better. The secretions were so much easier to clear. His oxygen requirement rapidly went down. Last of all, and most precious to me: with his face free of tapes and tubes, he began to smile and laugh for the first time, and he has been smiling and laughing ever since!
We were discharged from hospital in time to celebrate his 2nd birthday at home.
He has now had a tracheostomy for 5 years. There have been short stints in hospital, usually due to aspiration pneumonia, but those have been mild cases.
The most serious issue we have faced since March 2007 is bleeding in his left lung.
It was quite terrifying as on a few occasions blood would gush from the trachy, completely plug the windpipe, and Nigel would struggle and thrash furiously, then go blue and limp. Thank God, he always revived after prayer, vigorous emergency suctioning, and bagging with 15 lpm of oxygen, but it really was the stuff nightmares are made of.
Doctors guess it may be due to prolonged ventilation, and partly due to his diaphragm being displaced during a cardiothoracic surgery he had when he was really tiny. They've put over 15 platinum coils into his lung to plug up the bleeding, but were unable to do anything about bleeding that stemmed from the coronary artery. Also, in subsequent months they found that the bleeding was leaking past the coils they had installed - like water spilling over a dam.
So we live with the possibility that he could have a major bleed again, though he has not done so since May 2008. The doctors were positively gloomy when we were last admitted, and from their point of view, Nigel's a time bomb. From my point of view, if medical science can't do a blessed thing, then it has to be entirely up to God, so I'm leaving it completely in God's hands, and just trusting Him from day to day. After 6 years on this journey, I have seen that God is faithful and true - it's not just empty words - I KNOW He is in charge, and that I can depend on him even if I have no idea what the plan is.
In the meantime, Nigel goes to a special school three times a week, has physiotherapy once a week, and is both adorable and very naughty. He is non-verbal and non-ambulant, but finds his way to let us know how he feels, as all special kids do!
Edeline Tan
History
- Blog
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- Member for
- 3 years 35 weeks
Location
- Country
- Singapore
