Word spreads fast. I met with the social worker from the palliative care program today and she said that Jack's pediatrician heard that the kidney stone was back and thought Jack was likely headed for a hospital admission soon. The social worker wanted to know if a hospital admission was something I wanted or did I want to switch him over to hospice. Whoa! I shared with her that (1) hearing the word "hospice" makes me physically sick to my stomach; and (2) I don't understand why I would switch to hospice at this point. Apparently, what I envision hospice to mean is much different than what hospice in fact means. I don't yet grasp the advantages of transferring to hospice (which can be a temporary transfer and not necessarily a permanent placement). In any event, I told her Jack is not symptomatic, he's happy and feeling well and I'm not ready to make any changes. Of course, she was fine with that and is not pressuring me to make any changes - she's just making me aware of what my options are. She also told me she'd stick to only using the word "palliative care" for my benefit. :)
As far as monitoring the kidney stone, Jack's urologist wants another CT scan in August unless Jack starts having problems with pain or otherwise. In the meantime, we take our cues from Jack and just keep on keeping on.
To respond to Jenn's comment on my last post - Jack has only been on Amoxicillin prophylactically for UTIs and no other meds that would contribute to stone formation.
The first year residents at Phoenix Children's are being introduced to the TouchStones program through Ryan House (the residents are required to participate in an educational program provided by staff at Ryan House). TouchStones was shared with the first group of residents earlier this month and the feedback I received is that my Dear Future Physician letter moved them to tears (that surprised me) and that they appreciated the information provided in the letter. I don't think there is any question that most physicians inherently know that showing kindness, compassion and care towards their patients is a necessary part of the practice of medicine. However, what the residents from PCH shared is that while they know the importance of showing compassion, they don't always know HOW to show compassion. My letter offered some insight into how a physician can show kindness, compassion and care towards patients and their families.
My letter offers insight from my perspective and is only one example of how a physician should treat his or her patients. I encourage all of you other parents out there to share your insight and feedback with the physicians who care for your children. After all, doctors can't read our minds. I'm a big proponent of writing letters and giving feedback to the doctors I've encountered over the years. I can honestly say that 99% of the letters I've written have been letters of thanks for the care provided to Jack. I think it's important to let doctors know that we appreciate them and share with them those things they do that stand out as exceptional to us. Contrary to popular belief, doctors are human just like the rest of us and they appreciate hearing that they are doing a good job. Conversely, I think it's important to provide feedback - in a respectful and constructive way, when a doctor acts in a less than kind, compassionate and caring way. We all receive feedback in our jobs - both good and bad and doctors should be subject to the same feedback. I certainly hear from my clients when I don't meet their expectations and, just recently, my assistant suggested that perhaps I should think about touchstones for attorneys. (I'm not sure if that was directed at me or not!)
A perfect example of how sharing a letter can make a difference involves a good friend of mine. She has an adult son with disabilities and it has been nothing short of a nightmare as she is transitioning his care from pediatric to adult physicians. Her son was having problems with his shunt and after several surgeries and many visits to the ED, the neurosurgeon told her that there was nothing more he could do for her son and that he'd just have to learn to live with the pain he was experiencing. Ultimately, my friend found a different neurosurgeon who operated again and discovered that there was, in fact, an issue with the new shunt that had been placed by the other neurosurgeon. I pushed my friend to write to the prior neurosurgeon and let him know what happened because it's important for him to know that he was wrong in this case. My friend eventually did send a very well written letter and shortly after she sent the letter, she received a response from the neurosurgeon. He told her he appreciated her letter and that he would use the information she shared and the experience with her son as a learning experience. Kuddos to that doctor for acknowledging that he has room for improvement. If the letter had not been written, the doctor would never have known.
My point being, doctors need our feedback, especially our young doctors who are still gaining experience in not only the science of medicine, but the art of medicine as well.
Go forth and write those letters!
I spent last weekend in Southern California visiting with my friend Anne. My friend Jenny, from St. Louis, flew out to Phoenix and joined me on the road trip to California. The original plan (made back in January) was for me to go out to California to keep Anne company while she was on bed rest due to a high risk pregnancy. But, things have been going better than expected and bed rest hasn't been required. It was fun to get away and spend time with Anne, her husband Joe, daughter Maia and Jenny. The fact that Anne lives near the ocean was an added bonus.
I know it seems like I've been out of town every other weekend lately. The fact is, I need time away. The cumulative effect of caring for a medically fragile child for fourteen years coupled with the intensity of last year has drained my reserves. I'm easily depleted and restoring my reserves is essential to my sanity. Call me a wimp, but I understand the importance of respite and I take every opportunity I can to make it a priority in my life. I'm fortunate to have nurses who I trust and who will work extra hours when I'm out of town and a husband who never begrudges my time away. Not that I need to justify my time away, but I do get the raised eyebrow from some when I skip out of town by myself. I know Jack appreciates the fact that I take time away because I'm a much more present and happy mom when I get back.
Respite for everyone!
And last, but far from least ...
Mary celebrated her 20th birthday last week. If Mary had her way, she'd have skipped 20 and jumped right to 21. Ah, the naivety of youth - always wanting to speed up the clock. If they only knew.
Okay, it's almost 1am - time for me to end this and catch a few hours of sleep. Until next time ... peace my friends.