Central Venus Line (CVL)
On treatment protocol, the first two weeks my baby response well with treatment. The limp and spleen became smaller. Unfortunately when my daugther was discharge went back home, about 14 days she was at home. After that she was infected at central venous line (CVL) and CVL discharge. She need to underwent reinsert the new CVL insertion. The second CVL was not long enough, she had bleeding at the operation area. The doctor had to do the emergency operation to remove the second CVL and reinsert the third CVL. The third CVL was insert to the leg.
After the third operation, my baby was transferred to ICU for 4 days. Her breathing was faster than normal. Again she had the lung infection. She had took longer time recover from lung infection. Not only lung infection her neck also been swollen caused by wound from the operation. Because her lung had been infected many time, doctor diagnose her as hyper active airway . She stayed at the hospital for two months.
After two weeks discharge, she admitted to the wards again because got pneumonia. She was transfused blood and warded in the hospital for 2 weeks. This is because of Hyper active Away. Initially she just had cough and running nose. After that she started fever. So doctor gave her IV antibiotic for 10 days. But lucky this time her fever not long, just once a day for three continuous days.
CYCLOPORIN (CSA)
After taken CSA for about two month my daugther had problem with gum. Her gum swollen caused her can not suck milk. Now her milk was given through tube. After the physician increased the CSA dose to 40mg, her gum was more serious swollen. She also got ulcer in the mouth.
Some more the CSA level in blood was not high enough to stop taken. I read from the instruction came with the CSA bottle, CSA can cause more serious gum swollen when taken with nefidipine. Unfortunately my daughter had to take this drug because she got problem with the blood pressure.
Others side effect was hairy, she got a lot of hair grew up at the back and hand.
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