So here's the deal--We had Korban's immunology apt first thing this morning. We met with two different doctors and they conferred over Korban's case. He has to be off of his treatments for three months. This will give the infusions time to clear his system and will let us know if he can produce immunoglobulin on his own. We will go back in September for a check up and labs. If the bloodwork shows that his levels are good, we can stay off the treatment. If his levels have dropped, we will start back on SCiG treatments through Batson instead of UAB. So three months off of his treatment, plus waiting several weeks on all the lab tests to come back, then getting back started on SCiG and waiting for it to get back in his system good since we are starting over...if he does need it, it would be Christmas at least before we got him back healthy. I'm trying to think positively that he won't need it, but I honestly have a lot of anxiety about this. The Drs understood this and did tell us to call if he starts getting sick before then and they will reevaluate. Basically, as far as his insurance is concerned, he's starting over and we have to prove there is a need for his treatments.
On the one hand, I'm pretty excited thinking that there's a chance we won't have to do treatments every week or every month for the rest of his life. But I'm just scared he will get sick. I keep going back and forth in my mind. They told us this is the best time to do a trial like this because there isn't as much sickness circulating in the summer. They did tell us to avoid water parks and the lake though. Too many germs there if his immune system isn't functioning as it should. I worry about staph a lot because he always has open sores due to his skin picking, and they looked at all that today. It's just scary.
So basically we go home and wait. I think about how much work IViG and SCiG was, but it was so worth it. We've had the best year yet health wise this past year. It was so hard when he was little and sick all the time. We hardly ever got to go anywhere or do anything. Lots of frantic middle of the night ER trips with asthma attacks. Before he was diagnosed his pediatrician told us to just keep him home for a couple of months to see if he we could get him to well. My parents kept him at our house during the day because I was still working then. When me and Brad got home from work we immediately changed clothes and scrubbed up like a surgeon before we even touched Korban. We took turns going to church on Sunday. It was tough but we just wanted him healthy. All those precautions and he was STILL sick all the time. Always worrying. Once we finally knew what we were dealing with and got him somewhat healthy, we tried to make up for lost time. But he is older and stronger now, and his communication has improved a lot, so hopefully he can tell us if he feels bad.
We will see how it goes. Thank you all for your thoughts and prayers. Please keep them up! We are hoping Korban exceeds our expectations health wise and that Mom and Dad don't get too anxious.
We used our Pink Palace membership to get in the Museum of Natural Science for free as a treat after the apt. We always love going there. As an added bonus, today was snake day and they have a dinosaur