On Friday, I received a phone call telling me Lennon’s EBV levels are through the roof and the Dr. want a CT Scan to check for lymph-nodes. Lennon did great during the process and even with the fact that the contrast dye infiltrated through the vein in which his IV was in. We had to check for circulation and make sure that blood flow was present as his arm was rather swollen from the dye. I am happy to say that his arm today is back to normal.
However, I can’t help but wonder what the CT scan showed and if we have to worry about a Lymphoproliferative Disorder . I can only hope and pray this isn’t the case because according to this article: Lymphoproliferative disorders are among the most serious and potentially fatal complications of chronic immunosuppression in organ transplant recipients. Another article here discusses the PTLD more in depth. Seriously?
What has been done so far is that we reduced his immune suppressant medication. The next step is to go back to the Pic Line or other permanent type of access to give him his gancyclovir through the IV as opposed to oral/g-tube. This is in the talks with the docs right now and I won’t know about this until I suppose next week.
Again we find ourselves in limbo about diagnosis and prognosis. I am trying to maintain calm, collected and ‘just wait for the results’ and hope for the best. I suppose I can’t really elaborate on much more until I know ‘something’.