- 7 months

  • My son had a good appetite and was able to have enough milk for a while. However he repeated vomiting a few times and then it caused atelectasis. He had low blood oxygen levels from 70 to 80% even in a incubator. Also he did not drink much milk (10-20cc/time). However it seemed that the raised portion at his anterior fontanelle got smaller and the veins of his scalp did not get thicker any more.

<2002.01.31>

  •   My son started receiving a lung rehabilitation program. A physical therapist gives my son massage every day so that he can cough up sputum easily.

<2002.02.01>

  •   I stayed with him during night and then went home early in the morning. (Usually I stay with my son during night and my wife stay with him during day time.) It seemed that my son cried during our absence of about 1 hour. When my wife got to the hospital, she found that my son was in a bad mood. And then the first breathing problem happened to him.

<2002.02.10-11>

  •  In the morning, we found a leakage of drip. So a nurse pulled out a needle. Also on the day before, my son removed the tube for feeding from his nose. I asked our doctor if my son could spend some time without any tube or drip. I thought my son would need to relax. The doctor allowed it so we enjoyed staying together on his bed this day. The next day, I saw my son had enough milk in the morning. So again I asked our doctor not to put on the tube and drip to my son. I never thought this would cause my son a big trouble. My son had a respiratory arrest. Thanks to appropriate treatment by our doctor, my son got his breath back.

<2002.02.14>

  •  According to the case report in US, the reported patient had a stable calcium level at the age of 6 months. And the doctor changed low calcium milk to normal milk. And this change did not cause any trouble to calcium level of the patient. We also decided to change my son's milk to normal one. We strongly hoped that bone formation will be increased.
  • He drunk enough milk (60cc/time) without vomiting. It seemed his appetite is much better than one month before. However we noted that his blood oxygen levels (my son's level is 50%- normal levels are 88-92%) was very low when he sleeps. Our doctor told us that his trachea is getting thin. Neofrin and steroid were given to him through drip.

<2002.02.15>

  • The third respiratory arrest happened. At 3 O'clock in the morning, my son drunk milk of 30cc. After that, we moved him to his bed from a incubator, and just then my son started to foamed at the month and the color of his face changed. Also his body got stiff. My wife called a doctor. It was obviously different from the previous respiratory arrest caused by sputum.

<2002.02.18>

  • His blood oxygen levels got lower in the early morning. I called my family to come to the hospital.
  • At 9:07, my son ended his short life of 6 months and 28 days in his mom's arms.

bye-bye

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