This last week seems to have been buried by a sea of oblivion. Nothing got done in the real world; we were caught up with life on the floor of a major children's hospital in Philadelphia (CHOP-Children's Hospital of Philadelphia). William was ill again, his red-cell blood count was only 7.6 out of a possible 16. The doctors suspected that Willie was bleeding internally again; but where? A week of testing ensued where we watched Willie go through so many blood draws, x-rays, CT scans, and assorted other tests. He has very tiny veins so every time they had to draw blood he was in agony as they searched for a "good" vein; but he never cried out although the pain could be seen in his face. William has a quality about him that is very unusual, he is always in a good mood and faces each new test with equanimity.
The doctors and nurses were just outstanding. They were determined to find where Willie was bleeding and get it stopped. But his case was an enigma at first as all the tests were coming back negative for internal bleeding. Finally it was determined that Willie had iron-deficient anemia. It seems that when he was ill in San Diego (April 2013) that his iron reserves were depleted. Since you need iron to make red blood cells, his body had stopped producing new red blood cells, or at least slowed production to a crawl. When he left the hospital in San Diego his count was 9.0, but in the ensuing six weeks it dropped to 7.6. This time around, Willie was prescribed iron twice a day, and he must have a blood test done every week.
His condition was discovered by a routine blood test done in the Pulmonary unit when he came into CHOP to have his breathing tested (he has asthma). That very afternoon (Monday) they called us to tell us to get Willie into the Emergency Room at CHOP as quickly as we could. We were really stunned this time because Willie showed no symptoms at all. He was being his usual funny, witty self; talking "Hirsch-fast" as most of my grandchildren do, and very active. We could detect no new paleness although when they looked under his tongue and eyelids they were a very pale pink-we learned that much at least! It really concerned us that we had been unable to detect Willie's new problem. Last time he had been so lethargic, in a rare negative mood, pale, quick breathing, and rapid heart rate. We had assumed that we would be able to see when Willie had a problem because he would show those symptoms; now that rock was undermined and we must rely on the weekly blood tests. Willie, like most of us, hates the process of being stuck with a needle and it usually takes from three to five attempts for a phlebotomist to find and capture a good vein for him. He is pretty stoic and never cries out, but he instead takes a clean sock and bites on it like women used to do to bear labor pains.
I watch my son, David, take care of William and I am humbled. He is gentle yet firm in guiding Willie, and gives him the purest love. I do not remember doing as well when I was raising my children, including him. When you get older your child-raising days seem to have passed by in a furious rush and I seem to be aware of the mistakes I made more than the truly wonderful moments. (I've got to work on that perception.) David is in Real Estate and is on-call to his clients 24 hours a day, 7 days a week, so he had to drive to Atlantic City and back everyday for his job requirements, then come back in the evening and spend the night on a hospital couch. I stayed at the hospital with Willie and fielded the doctors and nurses questions as best I could. I finally learned to properly pronounce Willie's in-utero diagnosis of CCAM, or Congenital Cystic Adenoid Malformation. When his mother was carrying him she was told that he had CCAM wherein there were tumors filling both of his lungs and pressing against his heart. As a result, his heart was displaced to the right, and the aorta was clamped shut. The day following his birth he was given open-heart surgery to remove the tumors and repair the aorta (which will have to be replaced when he is about 13-he is now 12). Then he spent the next seven months in the NICU at Delaware's DuPont Children's Hospital, a 6 hour commute for his mother and uncle-who had no vehicle-by bus and railroad. It was grueling and they usually would spend a night in the Ronald MacDonald House and then return the next day.
Got off the track there, but we were finally able to bring William home on Friday evening. Today we have an appointment back at CHOP, this time to discuss his scoliosis with the orthopedists there. It seems never-ending for Willie and David and I am amazed at David's energy.
Tomorrow we will return to our discussion of adoption from many different perspectives. Have a really positive day and many blessings.
The doctors and nurses were just outstanding. They were determined to find where Willie was bleeding and get it stopped. But his case was an enigma at first as all the tests were coming back negative for internal bleeding. Finally it was determined that Willie had iron-deficient anemia. It seems that when he was ill in San Diego (April 2013) that his iron reserves were depleted. Since you need iron to make red blood cells, his body had stopped producing new red blood cells, or at least slowed production to a crawl. When he left the hospital in San Diego his count was 9.0, but in the ensuing six weeks it dropped to 7.6. This time around, Willie was prescribed iron twice a day, and he must have a blood test done every week.
His condition was discovered by a routine blood test done in the Pulmonary unit when he came into CHOP to have his breathing tested (he has asthma). That very afternoon (Monday) they called us to tell us to get Willie into the Emergency Room at CHOP as quickly as we could. We were really stunned this time because Willie showed no symptoms at all. He was being his usual funny, witty self; talking "Hirsch-fast" as most of my grandchildren do, and very active. We could detect no new paleness although when they looked under his tongue and eyelids they were a very pale pink-we learned that much at least! It really concerned us that we had been unable to detect Willie's new problem. Last time he had been so lethargic, in a rare negative mood, pale, quick breathing, and rapid heart rate. We had assumed that we would be able to see when Willie had a problem because he would show those symptoms; now that rock was undermined and we must rely on the weekly blood tests. Willie, like most of us, hates the process of being stuck with a needle and it usually takes from three to five attempts for a phlebotomist to find and capture a good vein for him. He is pretty stoic and never cries out, but he instead takes a clean sock and bites on it like women used to do to bear labor pains.
I watch my son, David, take care of William and I am humbled. He is gentle yet firm in guiding Willie, and gives him the purest love. I do not remember doing as well when I was raising my children, including him. When you get older your child-raising days seem to have passed by in a furious rush and I seem to be aware of the mistakes I made more than the truly wonderful moments. (I've got to work on that perception.) David is in Real Estate and is on-call to his clients 24 hours a day, 7 days a week, so he had to drive to Atlantic City and back everyday for his job requirements, then come back in the evening and spend the night on a hospital couch. I stayed at the hospital with Willie and fielded the doctors and nurses questions as best I could. I finally learned to properly pronounce Willie's in-utero diagnosis of CCAM, or Congenital Cystic Adenoid Malformation. When his mother was carrying him she was told that he had CCAM wherein there were tumors filling both of his lungs and pressing against his heart. As a result, his heart was displaced to the right, and the aorta was clamped shut. The day following his birth he was given open-heart surgery to remove the tumors and repair the aorta (which will have to be replaced when he is about 13-he is now 12). Then he spent the next seven months in the NICU at Delaware's DuPont Children's Hospital, a 6 hour commute for his mother and uncle-who had no vehicle-by bus and railroad. It was grueling and they usually would spend a night in the Ronald MacDonald House and then return the next day.
Got off the track there, but we were finally able to bring William home on Friday evening. Today we have an appointment back at CHOP, this time to discuss his scoliosis with the orthopedists there. It seems never-ending for Willie and David and I am amazed at David's energy.
Tomorrow we will return to our discussion of adoption from many different perspectives. Have a really positive day and many blessings.
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