Billy
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My son Billy was born 1/15/02 at Abington Hospital. He was a full-term baby, at 8.3 lbs. and 21 inches long. At 2 days old he was diagnosed with Hypoxic is chemic encephalopathy (HIE) and hypertonia. My labor was induced the day before delivery, no complications. His app scores where 8,9. His first day of life was perfectly normal; he cried, looked around and fed well. He was sleeping a lot, but that's normal.
Its now the second day of his life; he fed well in the morning, then our pediatrician came in to do his first check up. He also had his first vaccination, Hepatitis b shot. After his check up she said he was fine. Then around noon time our obgyn came in and asked if we wanted to get the circumcision for Billy? We said yes , but we just gotten done feeding him. Then the Doctor said we would have to wait an hour before surgery. So we did. Our Doctor then had a emergency. We waited til 3 pm, and I fed him again. He had a hard time latching on, and was sleeping a lot. The Nurse said that is normal the first 48 hrs. of being a newborn.
Its now early evening, all his company started coming in to see our little one. Everyone took turns holding him. While they where doing that he was looking around and tracking all. Around 8:00 pm everyone had to leave. After they left, I tried feeding him again. He fed for about 5 min, but fell asleep. My husband then came in, I then had to go to the lavatory. I lifted my son to my shoulder, his head flopped. I handed him to his Dad. But, as I was going into the lavatory Bill noticed discoloring in his lips. My Husband then went to the side of the bed to startle him; no response! This is all happening while I'm in the bathroom. My husband ran him to the nursery which was only 10 ft. away. He went into respiratory distress! His heart rate was 60 or below, they revived him. But, they still had to intubate, because he stopped breathing. They just did it for a little while then they tried to extubate him, but he had apenic episodes; they re intubated him. Then off to the NICU we go.
A couple days later it was official that he had HIE, as a result of respiratory distress. The Doctors then suggested we go to St. Christophers for second opinion an what is called a M R S test, its similar to a M R I. So, Billy was at St. Chris for a few days. We then got the results for the tests, they said he would just be late at walking, talking and feeding on his own. The day after they had the results they wanted to try to extubate him before transfer. So they did. He was fine for hours til it was actually time for the transfer, but he then seemed to get tired. We then had to re intubate him because they weren't comfortable keeping him extubated for transfer. Back to Abington hospital we go.
Its 2 months later, we got the letter, telling us there is no chance of recovery! Telling us what we have to do about our son. We had to decide to do everything or nothing. We tried both, waited it out, and went for the surgery's. That's when we had to go to CHOP of Phila. for his surgery's. We got the whole package, trach, Nissen and g-tube. Billy was first in the P I C U after surgery. Then after about 2 weeks or so we where transferred to CHOP Seashore House. There is where Mom and Dad learned how to take care of our son at home.
We have been home since June 2002! Since he has been home we have been trying everything. He has a Chiropractor, he sees once or twice a week, we do massage, ROM, and he also has a PT and OT. We are even trying old-fashion ways, we have a Medicine man and a acupucunturist. He is showing a little more improvement each day. But, he's still vent dependent 24/7. We are in the process of weaning him off. Hopefully that will work out for him.
We say to ourselves, how do we know what our son's future holds? Billy is now 15 months old, 25 lbs and 31 inches long. The Doctor's still don't see much improvement. But, we see differently! We just learned to take one day at a time. And, hopefully someday our son will say I LOVE YOU MOM & DAD.
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Sharon W. (Billy's Mom)
