Our first visit to STL Children's went really well. The staff is great (we're working with Dr. Bednarski) and they really seem to care about all the children. They were able to draw some additional blood for testing, but nothing conclusive came up as far as causes. The clinic also recieved word from Brenner's Clinic that the blood that was sent off to the Mayo Clinic two weeks ago came back with nothing conclusive. Frustration is prevailing!
We spent the whole day at the clinic getting a transfusion because his hemoglobin level was at a critical state again (ps...I'm extremely frustrated at our new pediatrician because I asked if she would order blood work earlier this week and she refused because he already had a clinic appointment on Friday--we may be searching for a new pediatrician!). Additionally, they couldn't find a vein in his arm, foot or hand...so they had to put the IV in his temple. It was by the far the worst thing in the world. He screamed louder than I've ever heard him scream, constantly tried to rip it out of his head, and now has a bruise and idodine stains on the side of his head. It's the first time I've cried while they've started an IV and I was there when they took the equivalent of two splits of wine out of him in NC.
They've put him on folic acid to try to bump up his blood counts. Folic acid is a major building block of red blood cells. We're getting labs done every week and hoping for the best.