I Think I'm Ready Now......

Ok so I think I'm ready to update you all the best I can with what we found out at the hospital yesterday. First off let me thank you all for the support and the thoughts sent our way we really appreciate it. Ok here go........... First off Carter does NOT have CF!! We're assuming that Levi doesn't as well however they couldn't get enough sweet from him to get a reading so he might have to repeat it. Next we went and saw their immunologist, Dr. Kishore, and he told us what we're looking at..... Basically their blood isn't produces enough antibodies to sustain their immune systems, some kids who have this condition are a systematic and then there are others like our little dudes that have problems. So he said first we need to retake the blood and make sure levels aren't dropping any further cause that could be a whole other issue, but it they are the same low number as before he thinks we need to start antibody replacement therapy, which is a three hour IV treatment where they give them antibodies from donor blood, this would take place about once a month. Not fun.... Next he said that he would like to repeat Levi's CT scan after this last round of antibiotics to see if we've gotten anywhere with cleaning out he's sinuses. If not then we have to take him to their infection disease doctor and he said he'd probably admit him and do IV antibiotics and if that didn't work then he'd have to under go a complicated sinus surgery more than likely at Cleveland Clinic. Phew... I know we got a lot of info yesterday!! So I have to take them back within the next week and have their blood drawn again, schedule CT scans, and of course wait........ Once he makes sure the levels aren't dropping any then we'll probably have to go ahead with the replacement therapy..... I would just like to know how you keep 22 month old babies from pulling the IV out of their arm for three hours!!! And we have to do this once a month? AGGHH.... I'm already tired just thinking about it!! He also told us that we really have to watch where we take them, not to go out in public a lot, not to have them around other kids and so forth..... He said if their levels don't start coming up then we may be dealing with a primary condition which they will not grown out of and is life long...... I pray for their sake it isn't.... They already miss out on so much.

So that's basically the low down, I'll keep ya all posted as we start going through all this......