Monday, August 29, 2016
Some Stability in the Middle of Major Life Changes
This past week has been full of a major life change for Anna (that's what her retina specialist calls it, and she is absolutely right!). So until now, I haven't taken an opportunity to let everyone know the results of Anna's last eye exam (almost two weeks ago!). Can I tell you how grateful I am that in the middle of so many changes for Anna, she has chosen to move forward with an eye specialist who has known her and treated her for almost two years? With all of the mixed feelings of aging out of the pediatric rheumatology program and the learning curve for both Anna and me, her mom, in the switch to adult rheumatology, having her calm, brilliant retina specialist gives me a whole lot of peace.
The OCT for Anna's left eye was completely normal. Praise the Lord! That means that the swelling in the back of the eye---the macular edema---has receded. The steroid injection to the back of the eye did not cause her eye pressure to rage out of control. Additionally, Anna's eyes were totally clear of any inflammation! First time in months! Thank you to all who are constantly praying for Anna. She can begin her college career (classes begin tomorrow!) without an eye issue lingering in the background. We decided on the way home from that appointment that Dr. N. is a stable force in all of these changes. We will hang on to her wisdom, her insight, and her calmness as so many other aspects of Anna's life are changing. For now, she has become what I call our "default doctor"---the doctor you listen to the most when so many other doctors are telling you very different things.
We explained to Dr. N. (the retina specialist) the concern of Dr. S. (the adult rheumatologist) regarding the Remicade dose, which Dr. S. considers "a dangerous level." Maybe that's true for rheumatology patients, but eye specialists have gone with higher doses to treat eye inflammation than Anna is currently receiving (and I think patients with Chrone's Disease are probably on higher doses, as well, although I don't know that for certain). Dr. N says (in her calm, matter-of-fact manner), "With a major life change like starting college, lets not rock the boat." She was willing to reduce the frequency of the Pred Forte drops, but she does not want to change the Remicade dose at least for another month. she said, "We just got Anna's eye to a quiet point after a very long time!"
And now we come to the point where I listen to all of this medical information, but step aside as a mom, and allow Anna the adult to address these issues and be the team coordinator between doctors. I changed the patient portal so that I don't even receive notifications anymore. All messages will go directly to Anna, and she will communicate with her doctors and let me know what she needs and wants me to know. Among my many parting words to Anna when we left her on the college campus, "Stay in touch with your doctors!"