Wednesday, March 20, 2013

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.


Deb said...

Ann, I love reading your posts... I guess part of this is having walked a somewhat similar journey, it brings me back to a much loved place... sounds it was also a very challenging place.
Anyway I did want to mention that if you really think about what Palliative Care really is, it is supposed to come into a child and family's life when a diagnosis of a condition is made... a condition that can shorten a child's life, threaten a child's life, or otherwise seriously compromise that child's life. It's the level of care the palliative care team provides that is the key. As a child's disease or situation progresses or changes, that's where the Palliative Care Team's role changes and evolves. The diagnosis should be where the team is involved... it's not a later stage of disease type thing like hospice is. I think that's where even the medical world gets confused.

Anonymous said...

That's a lot to swallow. As ever, you and Jack are in my prayers. I'll continue to pray for clarity and consensus among Jack's care team. Hugs to you and dear Jack.

Ann said...

Deb - thanks so much for your insight as well. I'm learning as I go as to what palliative care involves and it's reassuring to me that palliative care is really completely different from hospice. Jack is no where ready for hospice care, but because palliative care and hospice are often referred to together, I wasn't sure where the line is drawn. And, as you say, I'm learning that the line isn't fixed in the sand, it's constantly moving depending on what is happening at any given time.

I completely understand the feelings of missing this journey - there's something comforting in the familiar, even if the memories aren't all good.

Much love.

Christy said...

After having just been through kidney stone pain, I cannot verbalize how badly I feel for you and Jack. Especially when you've already been there, done that. And it wasn't easy (actually it was nightmarish, wasn't it?) I wish I had something useful to say that could help you figure this out.

Big hugs, Ann. And bigger drinks.


Jenn said...

Hi Ann,
I know you research everything, but what about medications that Jack already takes? -Including ceftriaxone that is frequently given to kids with UTI. I just read a review of a study that said that its use can cause "large" stones 8-14 months after its use. Also, I am a hospice nurse, and Jack is not a hospice patient. Palliative care all the way! I think we should all be on more of a palliative care approach. Sometimes I think we treat things that aren't really bothering people and then give them more problems. Sounds like you'll get these doctors in line :) Jenn

Susan said...

It's not easy to know what to do, that's for sure. Give yourself some time to think it over and perhaps it will come to you. (((HUGS)))