The Consensus of the Ologists

The nephrologist called me Monday morning.  She told me she had talked with Jack's urologist and he suggested trying to treat the kidney stone non-surgically by giving Jack medication that would increase the acidity of his urine and potentially dissolve the stone.  The problem with this approach is that the drug they use to increase the acidity of the urine causes problems with the lungs.  Not the best side effect for a kid on a vent with diminished lung function to begin with.  But, the nephrologist said she'd talk with Jack's pulmonologist and get his thoughts and then call me back.  She said she was concerned that the pulmonologist would think she'd lost her mind to even consider it.  My concern was whether the stone would dissolve into a fine substance that could easily be passed or would it just break off into smaller pieces that would have to pass.  If it broke apart into smaller pieces, then the pain of passing the pieces of stone would be sheer hell for Jack.

The nephrologist called me back this morning and said that Jack's pulmonologist wasn't completely opposed to putting Jack on the medication, that he said he could follow Jack closely and increase his vent settings to compensate for any breathing issues.  But, the pulmonologist did want the other ologists to be sure that if we went this route, that the likelihood of successfully dissolving the stone was high.  The nephrologist said that the drug they were considering was typically prescribed to prevent kidney stones, not dissolve them and that the urologist thought it might work, but really couldn't be sure. (I give the guy credit for thinking outside the box.) The final consensus of all the ologists is that it's just not worth the risk.

So we are back to trying to determine (1) how to handle the newly formed 4.7 cm kidney stone from hell; and (2) how to prevent the stone(s) from forming in the first place.  I should add that I received the radiologist's report from the CT scan in the mail today and in addition to "extensive calcification in the upper right renal collecting system", there is "tiny new nonobstructing calyceal stone in the upper pole of the left kidney."  So, now we are also dealing with kidney stone formation in the left kidney - which, for some reason, the urologist failed to mention to me (and is the very reason I request copies of all Jack's reports).  In any event, the nephrologist said that one of the meds she put Jack on is doing the opposite of what it should be doing.  So, she's taking him off the one potassium med and putting him on another one.

When I asked the nephrologist if she had any ideas as to why Jack is having so many problems with kidney stones and why the medication that should be working to prevent them is not, her response was "you mean, other than the fact that he is a very sick and complicated kid?".

I think that's code for "I don't have a clue."  

This is where perspective comes into play.  At this moment in time, I don't see Jack as a "sick kid".  I'll give her the "complicated kid" label - although I think how complicated a patient is to a doctor is largely a factor of that doctor's experience (or lack thereof).  From my perspective, for the majority of last year, Jack was a sick kid. Today, he's not in the hospital, he's not in pain and his numbers (sats and HR) are stable.  Does she see him as a sick kid solely because he's on a ventilator?  Or because he's on a ventilator and he's complicated?  The quandary is, in being offended when a doctor who doesn't know my kid that well views him as a very sick kid, I'm contradicting my own position that Jack is now sick enough to transition him to palliative care.  Obviously, I'm still struggling with accepting the decisions I've made.  There is nothing about this journey that has been easy, but decisions regarding Jack's care at this juncture are brutal.  They are as difficult or even more difficult than the decisions that had to be made fourteen years ago.

And this is where I'm incredibly fortunate to have the friendship, support and guidance of several of Jack's St. Louis doctors (current and former).  These doctors have been with us from the very beginning - they know me, they are invested in Jack and they truly care about both of us. As I try to reconcile taking a palliative care approach with how to manage the new/recurrent kidney stones, the insight and concern of these doctors has been invaluable.  I can't say enough how blessed Jack and I are to have such amazing people on our team.

At this point, the nephrologist has done her part (from her perspective) by changing up Jack's meds.  She is deferring to the urologist for any further treatment.  I left a message with the urologist to talk about what the plan is for monitoring the stones outside of waiting for Jack to let us know (by way of pain) that something must be done immediately.  I don't think there is any doubt that the large stone has to be removed at some point. The question is when. The honest answer is, I don't want Jack to have surgery at all, ever.  But, I'm not sure it can be avoided indefinitely.  I also don't want to find ourselves in an emergent situation again and then have to wait weeks to get the surgery on the books because of all the scheduling issues at PCH.  And the bigger issue is, if this stone is eventually removed - how do we keep it from coming back again?  The "your kid is a very sick and complicated kid" response isn't really the answer I'm looking for.  I have to wonder whether I'd get the same response from the nephrologist in St. Louis.  Or maybe my kid really is complicated and there is no discoverable source or treatable condition.  It certainly wouldn't be the first time I've heard that when it comes to Jack.

For now, I guess we wait, watch and take our cues from Jack.  The last week and a half Jack has been doing great and I'm just happy to have a happy Jack.  I'm trying to enjoy the moment and not look too far into the future.  Easier said than done, but I'm trying my best.

I imagine this blog post is way more information than the average blog reader cares to know.  But, I'm a detailed kind of person and that's how I write.  So, if you are still with me - thanks for checking in and thanks for caring.