David had to try on and pose with Josh's horse riding gear on |
I met with David's specialist today to discuss the blood test results from CHOP from long ago (it took 1 1/2 months for him to get the results) as well as other tests he had David get done last week. Unfortunately, the CHOP blood work came back negative for an underlying immune system problem which means that we still don't know the cause of his IgG Immune Deficiency (his body doesn't produce enough of the IgG antibody making him susceptible to all of the crazy bacterial infections he struggles with). This means the only other recourse is antibody blood transfusions! David can't stay on prophylactic antibiotics indefinitely because it's not good for his system. Plus, it doesn't work since for over a year now, he has been developing infections while on the antibiotics.
There is a new way of administering the antibodies which is subcutaneously. Although, all of the same disease transmission risks of a blood transfusion still apply (and is multiplied by 70 since the antibodies are from 70 donors rather than 1), there are not the typical allergic/adverse reactions to blood transfusions with this new method, unlike with the IV method. Screening and processing has improved greatly, and the last disease transmission scare was in 1997 with this kind of transfusion. Instead of needing a 3 hour IV every month, David will be getting a subcutaneous instillation of antibodies that will take 1-1.5 hours every week. We do not know if this will have to be lifelong or not. Young children with this disorder typically outgrow it by the time they are 4. David will soon be 5, so his future outcome with this disorder is unknown. The plan for now is to start as soon as the home health nursing agency can bring us the necessary equipment and teach us how to perform the procedure. David's doctor hopes that we can stop the infusions next summer to see if David can hold his own when the infection rate is at its lowest. This summer has been filled with multiple and recurring infections for David despite the prophylactic antibiotics.
David our crazy, daredevil child |
Thanks for your continued prayers on behalf of our precious little boy. Three weeks from today, we will find out if the hole in his heart has closed or whether he will require surgery down the road for that as well.
In case you missed previous posts explaining David's health issues, read David's Complicated Medical History and David's Current Situation and Prayer Needs.