It has been 15 days since we left the hospital and here we are back in again. During our last treatment, John and I watched in horror as our sweet girl seemed to disappear before our eyes. We were so shocked at what seemed to be happening that we couldn’t bring ourselves to believe that she was actually getting worse while she was receiving the treatment.
Everything about this disease is gradual. Aside from the initial onset that is. But the return of the symptoms and even the dissipation of the symptoms: both are gradual. Enough so to make John and I think we are crazy for even questioning the state our daughter is in. Is she healthy? Is she sick? Are we nuts?
After a week of watching her get worse and worse, we had an appointment with our ped to attend. It was previously scheduled so the timing was good. Our ped was shocked by A’s state and asked if we thought she could handle a blood draw. The ped is well aware of how traumatic needles are for A so she didn’t take this request lightly. I tried to gear my mind to getting blood results that said all of her titers and other numbers were normal and that this up and down business is just going to be our life. However, I was really quite thrilled when the results came back that her DNASE-B was sky high. In fact, it was the highest it has ever been.
We had already started her on Augmentin and hadn’t seen an effect yet. So our ped wanted to do steroids. We are very hesitant to do steroids for A because we have seen a lot of side effects from them. But, in this case, we didn’t feel we had a choice. The steroids did have a slight impact on A but it was very short lived. And back to the hospital we go…