So last night I got a call from our pediatrician that the lab didn't have enough of Gideon's blood to run his reticulocyte count so we have to go in today for another blood draw. We've already gone in twice this week for blood work and his RSV shot. Grrrr.
I guess I should explain that Gideon has hemolytic anemia. It's the main side affect from a condition I have called antibody isoimmunization. It pretty much is only a problem if I'm pregnant or need a blood transfusion. I had it with all 3 pregnancies but it tends to get worse with each one. It was bad with Giddy's. We started intrauterine blood transfusions at 22 weeks gestation to keep him alive and we did 5 over the coarse of 10 weeks. He was born at 32 weeks and 5 days from a complication of the transfusions. Since birth he has had 1 IVIG transfusion and 3 blood transfusion. He spent 5 weeks in the NICU and we have to check into the PICU when he needs another transfusion as it takes about 24 to 36 hours to get it all done. We go weekly to the doctor to check his CBC, which is done on site, but his retic is outsourced to a big lab.
His current hematocrit is 28 and his retic from 2 weeks ago was 0.1. His crit should be over 35 and his retic should be over 0.5. We're currently looking into Epogen injections. It would be an off label use but I've found other moms who have used it with success. I'm sure I'll be in for quite a fight with insurance as it's very expensive but it's much cheaper than a bone marrow transplant which is where we're headed if his retic doesn't start increasing and his crit doesn't stop dropping.
If you happen to find this post by search engine and want to know more about my experiences with being sensitized or with dealing with prolonged hemolytic anemia please feel free to email me. There is also a great board on Baby Center dedicated to the topic and you can find a wealth of information there.
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