I Can't and I Won't
The full report from Jack's last CT is:
- stable multiple nonobstructive calculi within the right kidney
- stable small nonobstructive calculus in the left kidney
- 1.4 cm calcification in the bladder lumen posteriorly ... appears to represent conglomerates of smaller calcifications.
Stones abound ... just waiting to announce themselves. When I talked with the urologist last week about the results, he didn't mention the stones in the bladder. I called his office and left a message asking if he'd call me because I had more questions. He called this afternoon, but I missed his call. Hopefully, we'll touch base tomorrow.
The question is, did the bladder stones originate in the kidney and travel to the bladder (unlikely) or form in the bladder. Based on what I've read, I'm guessing that the stones formed in the bladder because Jack experiences many of the issues that give rise to bladder stones (the details of which I'll spare you). So, where do we go from here? The one thing the urologist did ask me last week was whether the nephrologist is still following Jack. That's debatable. If you recall, according to her, Jack is a "very sick and complicated kid" and she pretty much left it at that. The blood work that was done last March was done at my suggestion and notwithstanding the fact that the results caused her to make a change in Jack's meds - she didn't request any follow-up blood work or a follow-up appointment. Bladder stones require monitoring. I'm debating on whether to stay with our current nephrologist, request a second opinion from someone else in the group (which is generally not allowed - or so I'm told) or travel out of state to find another doctor (ugh!) I'm not naive to the possibility that seeing a new nephrologist won't change a thing as far as Jack's treatment and/or condition is concerned. But, I need someone who is more invested in Jack. Yes, I'm a difficult parent and yes, I have high expectations. But, I've muddled through the medical muck long enough to know how high to set the bar and what I need to do to make sure that those who care for Jack are at the top. Many years ago, one of Jack's St. Louis docs told me that I needed to "temper my expectations" when it comes to what I expect from Jack's doctors. My response to that is - I can't and I won't.
I'll wait to talk with Jack's urologist and then make some decisions from there.
On a positive note,
A while back, I read about an organization called CAREGIFTED that gives respite to family caregivers through all expense paid getaways. One of the qualifications is that you must have been a caregiver for at least 10 years. I shared information about this organization with a couple of my sorority sisters and encouraged them to apply. Initially, it didn't occur to me to apply myself, although I'm not sure why. About a month ago, I sat down and wrote out my story and filled out an application. I received an email last week informing me that I had been selected for a Caregifted getaway. Amazing! I honestly never thought I'd be selected. There are several places to choose from for your week getaway and I chose Vancouver Island. They offered me a week away in September, but I'm not able to go because of prior commitments. I told them I wouldn't be able to get away until some time next year, so they will let me know the 2014 availability as soon as they know it. I am beyond excited and humbled that I was chosen for such an amazing gift. I can't even imagine what it will be like to have an entire week of uninterrupted sleep and time all to myself. I'm feeling guilty already.
That's the update from here. I'm trying to keep the whining to a minimum, so the blog entries have been sparse. I've got a few blog thoughts started - the topics are anything but light. I'm not sure when (or if) I'll finish writing them. In the meantime, thanks for checking in and thanks for caring!
xo
The question is, did the bladder stones originate in the kidney and travel to the bladder (unlikely) or form in the bladder. Based on what I've read, I'm guessing that the stones formed in the bladder because Jack experiences many of the issues that give rise to bladder stones (the details of which I'll spare you). So, where do we go from here? The one thing the urologist did ask me last week was whether the nephrologist is still following Jack. That's debatable. If you recall, according to her, Jack is a "very sick and complicated kid" and she pretty much left it at that. The blood work that was done last March was done at my suggestion and notwithstanding the fact that the results caused her to make a change in Jack's meds - she didn't request any follow-up blood work or a follow-up appointment. Bladder stones require monitoring. I'm debating on whether to stay with our current nephrologist, request a second opinion from someone else in the group (which is generally not allowed - or so I'm told) or travel out of state to find another doctor (ugh!) I'm not naive to the possibility that seeing a new nephrologist won't change a thing as far as Jack's treatment and/or condition is concerned. But, I need someone who is more invested in Jack. Yes, I'm a difficult parent and yes, I have high expectations. But, I've muddled through the medical muck long enough to know how high to set the bar and what I need to do to make sure that those who care for Jack are at the top. Many years ago, one of Jack's St. Louis docs told me that I needed to "temper my expectations" when it comes to what I expect from Jack's doctors. My response to that is - I can't and I won't.
I'll wait to talk with Jack's urologist and then make some decisions from there.
A while back, I read about an organization called CAREGIFTED that gives respite to family caregivers through all expense paid getaways. One of the qualifications is that you must have been a caregiver for at least 10 years. I shared information about this organization with a couple of my sorority sisters and encouraged them to apply. Initially, it didn't occur to me to apply myself, although I'm not sure why. About a month ago, I sat down and wrote out my story and filled out an application. I received an email last week informing me that I had been selected for a Caregifted getaway. Amazing! I honestly never thought I'd be selected. There are several places to choose from for your week getaway and I chose Vancouver Island. They offered me a week away in September, but I'm not able to go because of prior commitments. I told them I wouldn't be able to get away until some time next year, so they will let me know the 2014 availability as soon as they know it. I am beyond excited and humbled that I was chosen for such an amazing gift. I can't even imagine what it will be like to have an entire week of uninterrupted sleep and time all to myself. I'm feeling guilty already.
That's the update from here. I'm trying to keep the whining to a minimum, so the blog entries have been sparse. I've got a few blog thoughts started - the topics are anything but light. I'm not sure when (or if) I'll finish writing them. In the meantime, thanks for checking in and thanks for caring!
xo
3 comments:
What part of the island? Because your coming to our neck of the woods! Glad your going to be getting some relaxing time!
Christina - I don't have any details on the place where I will be staying. But, I sure am looking forward to it!
Ughh! I know what you mean about filtered info. I hate reading reports and finding stuff I would otherwise not know about.
I'm glad you got chosen for a getaway! No guilt allowed! Vancouver will be wonderful. XOXO.
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