We recently had an appointment with Elena’s nephrologist and wanted to share a little bit of Elena’s medical world with you. Elena is typically very excited to go see the doctor. To prepare, the week of the appointment we’ll play with her doctor toys and watch some Doc McStuffins. This is a simple ritual but seems to help normalize her frequent medical appointments.
We start the visit by going in for a blood draw to check her routine labs, along with additional tests from other specialists. While we wait Elena likes to watch the fish swim in the aquarium (and sing Baby Shark) or watch Elmo/Sesame Street. As expected there’s usually a little bit of sadness, crying, or resistance but she quickly recovers when she gets to pick out a “special” sticker at the end. Despite the discomfort of frequent blood draws Elena is a total trooper and they are critical to closely monitor her organ function and overall health.
Then we go in to see her Nephrologist to look at her overall trends, do a physical examination, track her vitals/growth, discuss her organ function, and adjust her medications accordingly. Currently, her chronic kidney disease (CKD) is at Stage 3b (moderate to severe) so it’s important to closely monitor her function every 1-3 months. Once her CKD starts to approach Stage 4 her doctor will refer her to the dialysis/transplant team to begin assessment and planning for transplant and related interventions.
Given Elena’s genetic diagnosis and other complex secondary conditions, the referral could happen sooner. There’s no way to know how soon that might be so we continue to diligently maintain her current daily treatments/interventions at home and do our best to prepare for whatever may come in the near future.
Thank you for donating to COTA for Team Elena. COTA funds have helped relieve the heavy burden of uncertainty with the financial costs associated with Elena’s complex medical care. To be on the receiving end of this outpouring of love is overwhelming, to say the least, and deeply appreciated.
In the meantime, we will have some additional specialist visits at Children’s Hospital of Philadelphia next month that we’ll post a (Part 2) update on that soon.
We also just started a “Team for Elena” tee-shirt campaign, at the link below:
https://www.customink.com/
Thank you again for your continued support, thoughts, and prayers for sweet little Elena!