We are back in Colorado, and were scheduled to fly back to California yesterday for an IV infusion, Julian's last IV infusion, of one of his anti-rejection drugs. However, Julian got sick on Monday with a bad cold, and Dave and I were concerned about transporting him all over the country through airports and plane-rides to get him his infusion, when it could be done here in Colorado at Denver Children's Hospital.
Tuesday night I was assured by the Children's Hospital physician "One-Call" hotline that if I called the patient advice line in the morning, Julian would get a Doctor who would be able to sign off on the orders from Palo Alto, and get the infusion. The Infusion Room at Denver HAS the drug in inventory, and they are more than willing to schedule him for the infusion but need an "in-house" Doctor to sign off on the orders.
Therein lies the problem.
The Kidney Center at Denver has categorically refused to have anything to do with Julian, including writing the orders for this anti-rejection drug that Julian requires THIS WEEK, because we have not "transferred his care" back to them. Nor do we have any plans to. They don't do the steroid-free protocol, and won't take orders from Palo Alto.
However, they are not even treating him as a visiting person who would be under the care of a "home" nephrologist and in need of services, which they need to do whether he is under their care or not.
I have been in contact with the Physician One-Call, the Patient Advice Line, the General Pediatric Clinic, the Specialties Care Clinic, and am still imploring the Kidney Center via e-mail as to why they cannot write orders on advice of the Palo Alto Nephrologists? They are all within the Children's Hospital Network...I just don't understand. I have left a message for his case manager at Blue Cross Blue Shield, and am getting ready to call the CEO if I can't get this done.
Pray pray pray! The only inroad I presently have is that Dr. Elias, of the Denver Children's Hospital Specialty Care Clinic has agreed to speak with Julian's Nephrologist in Palo Alto and CONSIDER being Julian's contact person at Denver Children's. Please pray especially that Dr. Elias would consent and give this treatment.
A quick note from David:
Stacy has been pursuing Julian's care on this one particular issue tirelessly ALL WEEK. She's worn out, but will not stop until it is resolved. Anyone who knows Stacy can attest to her tenacity when it comes to the pursuit of something that matters to her - and few things matter more than Julian, to either of us.
It is immensely frustrating watching doors close as Stacy pursues lead after lead. At the end of the day, if this infusion can't be administered here in Colorado, we're willing to put Stacy and Julian on a plane next week (once Julian has recovered from his present ailment) in order to get what is essentially a 15-minute intravenous treatment. The notion that this treatment cannot be administered here is preposterous - how would someone traveling to Colorado from out-of-state have this taken care of?! There has to be a way - yet Denver Children's (especially the nephrology clinic) seems resolute in its denial of this service.
Please pray with us that this can be resolved, one way or the other.