This week we were able to get Eli in to do some additional blood work and we had a hematology clinic appointment. The lab work showed Eli's hematocrit had improved a little since our last appointment but it was still a little low and they are going to continue to monitor it. In addition we found out that the size and shape of Eli's blood cells are normal which rules out a lot of bad blood disorders. It looks like Eli's marrow is producing blood cells but the recurring theme was a low ceruloplasmin level. Ceruloplasmin is associated with Menke's disease and we've had Eli tested for the genetic marker and it came back negative. We've also gone round and round with his ceruloplasmin tests. They sent this test off to a special lab at one point to measure how low it really was and the special lab came back with a normal result albeit a little lower than what was measured at the hospital lab. According to the hematologist we meet with the result may be "normal" but it's still lower than it should be and could have some blood impact. They are going to send Eli's blood off to the special lab again to measure the level again and then we're going to look at next steps. We discussed the possibility of doing a bone marrow extraction to make sure his marrow was healthy and producing red blood cells the way it should. This is a bit of a long shot but something we might consider if Eli has to go under general anethesia for something else.
I've attached a graphical representation of Eli's hematocrit level since he was born to give you an idea of what we've had to deal with. Normal hematocrit levels for an adult male range between 39% and 50%. For a 6 month old the level should be somewhere between 33% to 40% on average. Young children have a little lower hematocrit than adults. Hematocrit measures the volume of red blood cells as a percentage of your overall blood.
Eli has been running on the low side of normal for most of his short life. What we don't know for certain is what impact we had from drawing all the blood during his first month of life. There was certainly some impact and we bolstered him with the transfusion but we still don't know if his blood issues are indicative of his overall condition or if they are simply a complication from the hospital stay and trying to find a diagnosis. The only thing we can do now is continue to monitor it and address any issues that come up.
