The day started very early on a frightening note. Around 5 a.m. the attending physician came in to tell me that this was very serious situation. He stated they may move him to ICU and asked for my signature on a consent from for a blood transfusion. They had identified that his hemoglobin was dangerously low. That morning I think I washed out my first pair of contact lenses, the tears came when I left the room, when I was away from Austin.
No diagnosis at the beginning of the day and this day began what would be our new normal for quite a few days. Shift change around 7 am (and later at 3 pm, 7 pm and sometimes 11 pm) and rounds would start as early as 8:30 am. We had two teams of doctors who were working with Austin, the Internal Medicine team and the Hematology team. They don't round at the same time and although it seemed a little overwhelming to have up to seven white coats in our room at one time it was at least a little reassuring that we had so many individuals who as a whole would determine what we did next.
It’s painful and worrisome seeing your child (or any loved one) lying there with IVs in both arms and all you can do is wait for answers that nobody seems to have.
His diagnosis was given by the Hematology team – he had Hemolytic Anemia, warm antibody, his body was attacking his good red blood cells and his spleen was enlarged. They felt he should have a hemoglobin count of at least 12 (normal can range as high as 17) and his was only 6.4 – a long, long way off from normal. The doctor describing what could have brought it on simply used the “what came first, the chicken or the egg” analogy. Did something go wrong with his spleen that created this problem or did he have a simple virus that his body got confused and started attacking his good red blood cells and that’s what created the spleen to enlarge.
His Bilirubin count is extremely high, that’s why he looks like a big yellow minion (Despicable Me). Even the whites of his eyes are yellow.
It seemed like the blood transfusion took for an eternity for them to obtain the blood (especially since it seemed so urgent at 5 a.m. in the morning to get my consent for the transfusion) and at one point I offered to donate. I then learned that it wasn’t a simple blood transfusion, it needed to be a blood transfusion with a specific process behind it, with specific antibodies. The hospital had none on hand and we had to wait to get the blood from the blood bank. The blood transfusion did happen later in the day, he had an IV pole with about 6 bags hanging off of it since they were also pumping him full of steroids and antibiotics.
My updates to family and friends were very brief, my connectivity was very limited, it took a lot of focus for me to keep my head on straight so I could be there by Austin’s side not falling a part in front of him. I didn’t make a lot of phone calls because I couldn’t trust myself to keep it together long enough to say what I needed to say and I still didn't have a good handle on what was going on, what the prognosis would be. I did what many of us would do, I looked up Hemolytic Anemia on the web but I went to credible and trusted sources such as the National Institute of Health. I didn't learn much, only that it was rare and there were varying levels but it was startling to see the words "fatal" next to the severe description. I didn't have the courage to look up what defined "severe" and this was something during the time I didn't share with family and friends.
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