I am so sorry this took so long, but here it is...
We did go to UNC on Tuesday and found out a few things. First, big ol' hoss Finn now weighs 17.2 lbs.! All the nurses can't believe how big he has gotten since June and he has them all wrapped around his tiny finger. You can already tell that he is going to take after his dad and be quite the ladies man!
His levels had changed to hemoglobin 7.2, ritics 3.6 and bilirubin 2.2 so Dr. Gold decided it would be best to give him another transfusion. It really is so much easier now that the broviac is in and it makes a world of difference! The only problem is going to be keeping him healthy through flu season with two siblings in the house. We also did get the report back from Mayo and unfortunately it did not tell us much. It showed that he has an acute enzyme deficiency in his RBC's caused by low levels of G6PD. But Dr. Gold is not certain that this is THE or SOLE cause of what's going on in his body.
Finn's condition is really quite a mystery for everyone. If you look at him, he is the healthiest, happiest baby in the world. He is growing and advancing just like nothing is wrong, but underneath there is something that is causing his body to break apart his cells. We asked Dr. Gold the big question that is on everyone's mind...where do we go from here? Unfortunately there is no answer other than to keep having transfusions. At the age of five, children with blood disorders can have their spleens removed. You can remove it earlier, but the spleen plays a big part of your immune system during early development. This doesn't mean a guaranteed cure, but the spleen is the part of your body that breaks apart your blood cells. There is still a chance that is body will start to slow down the hemolysis or stop it all together. That's mainly because we still don't know whats causing it or that there is no obvious answer after all the tests. If you are praying for anything, pray for this to happen or for the doctors to find a reason why.
In the meantime, I have been in contact with the Red Cross here in Greensboro and we are going to host a blood drive in Finn's honor this Fall. I hate to think about the situation we would be in if it weren't for people constantly giving blood donations. The blood collected won't be for Finn's use, but for the Red Cross in general and will hopefully raise awareness of their need as well.. I will let everyone know the details when they are finalized and hope that people can participate!
Sorry for the long post! Thanks for everything!
Beau and Craig
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