Just a short little page to update family and friends on Devin's progress while undergoing treatment for a relapse of leukemia and his second bone marrow transplant. Devin is currently in remission and we plan to keep him there FOREVER!
Here is Devin while waiting, waiting, waiting to be seen. At least he was entertained.
Bleck sums up how I feel about our new hospital. Several weeks ago, I got word that Devin's records had been sent to his new doctor and to call for an appointment.
I called, verified they had the records and made Devin an appointment. The office asked for a referral from his primary pediatrician so I called to request that. The day before the appointment, I got a reminder of his appointment.
Even though we are less than 30 miles from the new hospital, it took almost 2 hours to drive there. Gotta love the DC traffic! Since the parking garage was almost full, it was all valet parking. We were directed to the oncology floor rather than the clinic but eventually made it to the clinic.
After waiting an hour, I signed consent forms. Another 2 hours passed before they told me that Devin's referral was not there and could we reschedule. Because of the school schedule here, I had to take not only Devin but Iain out of school for the day. So, I drove almost two hours, sat for 3 hours, paid $7 for parking and drove another 2 hours back home for nothing. I still can't figure out why NO ONE called to tell me the referral was not there. I would have made sure it was taken care of. They knew before we got there the referral was missing. I was not a happy mom.
I spoke to the office the next day and asked that I get a call back to tell me specifically what was missing so I could make sure it was sent before I rescheduled the appointment. A week passed with no word from the clinic. I called back to find out what was needed and got this response: "Oh, we got his referral last week, you just need to make an appointment." Thanks, nice of you to call and TELL ME THIS. ::::sigh::::
So we go through the entire thing again today but this time, the referral was there and we only had to wait 2 hours to see the nurse practioner and an attending. Since nothing is going on with Devin, there was not a lot to say. He will be seen again in 4-6 months and also see the endocrinologist then. maybe we will get to meet his actual doctor. I realize that there is no pressing need because Devin has nothing going on medically but it would have been nice to meet him. I just feel like we have been shuffled to the side. It makes me really appreciate how great Vanderbilt is and all of the staff.
I am just not at all impressed with our experiences so far and frankly, at this point, I would be worried if something were to happen to Devin that would require him being seen there long term. I keep telling myself that this only reflects on the administrative side of things, not on the caregivers but it is hard to convince myself of this.
So, we have to call back in June to get his next appointment. Thankfully, his referral is good until September!
Too bad flying back to Nashville for his check ups are not an option.
We are settling into Virginia nicely. There is a creek right behind our neighborhood where the kids can go catch minnows and crawdads. Devin really enjoys his school. Ironically, his teacher has family in Dickson! We got a puppy a few weeks ago, an English Springer Spaniel named Tinsel. This week is spring break so tomorrow we are going to fight the traffic and go to the National Zoo. posted by Devin's Mom
3:13 PM