Monday, August 29, 2016
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!"
Monday, August 15, 2016
Last week was Anna's official switch to adult rheumatology. The rheumatologist and the resident were very thorough, and had a good knowledge of Anna's history. I liked them both. Anna's first thought when we left was that she missed her pediatric rheumatologist. But she has known him for almost all of her life, so this change will take some adjusting. Relationships take time.
One new thing for parents who are making the switch---and maybe you've already experienced this. I was asked to step out of the room for a little bit, so that the resident could speak freely with Anna about sex and drugs and alcohol. He didn't tell me what they were going to talk about, but Anna filled me in later.
Since Anna is an adult, and all medical decisions go through her (although I'm always available for consultation!), I was trying to be very intentional about mostly listening and not talking. There was a lot of information to listen to. Different doctors mean different perspectives and opinions. Dr. S. (the adult rheumatologist) is very concerned about Anna's Remicade dose, feeling that it is very high. Anna is at 15 kl/per kg, and Dr. S. feels that 10 kl/per kg should be the maximum. I did speak up to explain that we went that high because Anna's uveitis was in a stubborn flare. (I didn't mention that Dr. Foster in Boston recommended that Anna be on 20 kg/per kl---so I was thinking that at least 15 wasn't as high as 20!) Dr. S. would prefer to decrease the Remicade and increase the methotrexate. However, when Anna had labs done later (before the Remicade infusion), two of her liver enzymes were elevated, and I know this means that we may have to reevaluate Methotrexate in light of those numbers. Dr. S. is waiting to make any decision on these medications until Anna sees the retina specialist this week, to see the status of the uveitis and macular edema. It sounded like Dr. S. has a good working relationship with Dr. N. (the retina specialist), so that is good---they can talk about it together. They both seem to be brilliant doctors who know their stuff.
The MRI Anna had done in June showed that there has been more active arthritis in the TMJ since her surgery last year. Anna has been having problems with her one big toe for about six weeks (since she went on a day trip to Washington, D.C., and walked a lot). The doctors did not address these issues (except to ask if she ever takes ibuprofen for the toe issue)---I think they were more concerned about the Remicade dose. (And maybe we're to accustomed to a pediatric rheumatologist whose goal was medicated remission.) Maybe we (Anna) should be asking what Dr. S's overall goal is for Anna's arthritis.
This all happened days ago, and I spent the next few days with hundreds of thoughts swimming through my head---about this medication tightrope we are walking, and wondering if Anna knows all of these details and implications of the medications and their side effects, etc. (I'm thinking she probably does, since she's heard me talk about them, and maybe she will have more to say on the matter when I keep quiet about it.) This is all probably the normal thoughts of a mom transitioning and handing over the medical reins.
ANYway . . . . Sunday rolled around, and even during the singing time of our worship service, I still had all of these thoughts and questions and concerns about Anna's appointment going through my brain. And then we sat as the offertory was played. "Be Still My Soul." Played by a substitute pianist, who didn't know that our regular pianist had played that song just last week (different arrangement). And this made the third time this song penetrated my brain and my soul within the past week---a friend had posted the lyrics on Facebook. When these situations happen, I feel like God is telling me to sit up and pay attention. "Be Still My Soul, the Lord is on thy side . . . . "
As we get ready to move Anna to the college, I know from past experience (having gone through this with two older siblings) that we will have a candlelight worship service after we move our first-year students into their dorms. My husband (who works at the college) once explained to me (when they first began this tradition), that it's a service where the purpose is to remind parents that God has been faithful in the past as we have raised our children to this point, and He will be faithful to them for the next four years in their college journey, so we can trust Him and trust our children and trust the college (and let them spread their wings and fly!). It's an awesome service! No matter what the future holds for Anna (with college, relationships, medications, disease, etc.), we know that "through every change, He [God] faithful will remain."
Be still my soul the Lord is on thy side
Bear patiently the cross of grief or pain
Leave to thy God to order and provide
In ev’ry change He faithful will remain
Be still my soul thy best thy heav’nly Friend
Through thorny ways leads to a joyful end
Be still my soul thy God doth undertake
To guide the future as He has the past
Thy hope thy confidence let nothing shake
All now mysterious shall be bright at last
Be still my soul the waves and winds still know
His voice who ruled them while He dwelt below
Jane Laurie Borthwick | Jean Sibelius | Kathrina Amalia von Schlegel
- © Words: Public Domain