Duke Conference Call

Hello all, well we had our conference call today with the docs from Duke. It went well. They are going to start Caleb on a drug called cyclorsporine to help him with the skin breakdown issues. This drug can be hard on the kidneys if it reaches a certain level so they will be checking that. In addition, this drug makes the individual grow hair. This hair will eventually fall out once Caleb is off of it. We have been given the okay that if he responds to the cyclosporine well that we may be able to try baby food, wooohooo. We have been waiting because he has been having a lot of trouble digesting and absorbing his nutrition. We are hoping that this cyclosporine may help him enough that we can start baby food. We have found out that it will be approximately 5 weeks until Caleb will head to Duke. The thought now is that he will fly down on a jet, with a nurse and myself. Upon arrival Caleb will go through a serious of blood screens for about a month. At the same time, thymus tissue will go through a screening process to make sure it is a fit for him. Once they have the surgery scheduled, Caleb will go to the ICU and will have a drug infusion for 3 days that will completely deplete his body of T cells (the ones that he does have) so that his body does not fight infection. He will go to the ICU for this infusion to keep a close eye on his vitals as sometimes there can be spikes/drops in heart rate and blood pressure. Two days after the infusion Caleb will go to the Operating Room to get the transplant. Thymus tissue will be implanted into both legs in the muscle. They will make one incision on each thigh and place approximately 40 pieces of tissue. He will then be watched close for the two months. He will then have a biopsy to see if the Thymus tissue has begun to educate the T cells. If okay, Caleb could then be sent back to Children's in Pittsburgh to be watched for the next couple of months (great news that we were not expecting----closer to home---lets pray this is what happens for him). Then back at Children's they will watch all of his blood levels to see how the immune system is working. From there it is all up in the air as to when we would be home.

Long term possibilities. . . for the first year Caleb will be in Isolation (very clean home environment-we are writing Extreme Home Makeover to see if we can get help with a filter system, cleaning our basement from the flood to make sure it is safe, and better windows, and anything else they may be able to provide), he will also be on a drug Bactram (which he has already been on) for this time. The Bactram tries to prevent him from getting a pneumonia that can be life threatening to immuno-suppressed patients. They will then try to give Caleb a Tetnis vaccine, if his body responds then that is great news that his immune system is working. He will continue to be on the IVIG (Intravenous Immunoglobins mentioned in a previous blog) for the following 2 to 3 years, depending on how his Immune System is functioning. We do not know the frequency as to how often he will get the IVIG during this span.

We still have to finish our conference call tomorow to sign consent forms. If I have any more updates or pics :) I will post them!!!