Monday, May 20, 2013


Last week I emailed Jack's neurologist to give her an update on Jack.  I let her know that Jack was doing really well despite the presence of the 4+ cm kidney stone occupying half the space in his right kidney.  I also told her that Jack was having some blood work done and pointed out to her that I knew she'd be thinking "Why are you having blood work done if there aren't any obvious issues going on with Jack?".

Her suggestion: "I am thinking you get the blood draw and not ask the answer."

I could never do that.  Not only do I need to know ALL the information when it comes to Jack, I need to know it now!  Needless to say, I was not happy when I hadn't received a call from the nephrologist by Friday with the results of the blood draw on Wednesday.  When I called the office on Friday, I was told that the report was printed and in the nephrologist's inbox, but she was seeing patients all day.  I expected to receive a phone call at the end of the day from the nephrologist.  No call was received.

I called the office first thing this morning to let them know that I wanted the results of the blood work TODAY.  I was informed that Jack's nephrologist is out of the office for the week attending a conference. (Which makes her not calling me on Friday more than slightly annoying.)  Fortunately, I've established a good rapport with the nephrologist's nurse, (as tough a persona as I like to portray, I'm really quite reasonable and personable when dealing with most medical professionals.  Being an ass won't get you very far) and he told me that there was nothing concerning with any of the results. I was primarily interested in Jack's potassium level, which he indicated is "consistent" with what it has been. Not entirely helpful information.  When I asked him what the nephrologist was looking for with the blood test, his response was that she wasn't looking for anything in particular because "she wouldn't do anything with the information".  So, why did she even order the blood work in the first place?!  (To appease me, no doubt.) Based on our continued discussion, Jack's nephrologist has clearly documented in his chart what I told her back in November - that we are taking a palliative care approach with Jack.  Based on this, the nurse said that the nephrologist's main concern is making sure Jack is comfortable, not trying to figure out the "why" of the significantly abnormal numbers from his previous 24-hr urine analysis.

Isn't this what I want?  Back in November, after the year from hell, I didn't want information that would lead to pursuing more testing.  Now that Jack is doing well, the decision to not look for answers - or, more importantly, solutions, isn't as straight forward.  My question is, what would Jack's nephrologist be doing differently if we weren't taking the palliative care approach?

I feel so conflicted.  It's easy to say "enough" when Jack is feeling run down and his body needs to rest.  However, when Jack is feeling better and doing so well, the decision to do nothing - when you know that things inside his body aren't as they should be - doesn't come as easy.  Not gathering information and looking for answers goes against my very nature.  I'm an information gatherer, need to know kind of person. Those of you who know me well can understand how conflicted I feel. Nevertheless, I'm trying to keep my focus on my heart and not my head.  I know in my heart that it's not in Jack's best interest to dig deeper.  I need to just let things be.  It's a constant struggle for me to shut off my mind and follow my heart.

I shared with Jack's neurologist that I feel like I'm in purgatory these days.  In response to her suggestion that I not ask the results of Jack's blood work, I told her "that would take me from purgatory to hell."  

Compared to everything we went through last year, purgatory beats hell any day.

Just trying to take it one day at a time.


A few pictures from this weekend

Last Spring swim meet

Eric isn't the fastest, but he gives it his all and for a kid who was terrified of the water just two years ago, he is doing amazingly well.  He swims 3x a week with his swim club and he rarely complains about having to go to swimming. It's a great sport for him and definitely helps burn a lot of his pent up energy!

I was pleasantly surprised to find Eric hanging out in bed with Jack on Sunday morning. It's interesting because Eric never talks to Jack, but he must feel a connection just by being near him.

You can really tell how small Jack is for a kid who is 14.  
Eric is 11 years old and he is so much bigger than Jack. 

We are dog-sitting my sister's dog, "Annie" until at least sometime next year.  My sister recently transferred to NYC for her job and her husband works near Los Angeles for his job (and they technically live in Phoenix). They didn't know what they were going to do with their dog, so we volunteered to keep her.  I'm not known for being an animal lover, but this dog is growing on me. She's got such an expressive face and I think she likes me - mostly, because I'm the only one who takes her out for walks on a regular basis.  I'm still trying to master the walking the dog and pushing the wheelchair thing.  




E Fischer said...

Frankly I'm amazed, despite the often sub-par medical treatment here, that you don't have, as i do, instant online access to test results. But then the system is quite different here, with "health groups" and each doctor belongs to that health group. Results are not a doctor's but rather the health group's and legally, the patient's.
Anyway, you look to see if there is decline, but that is the last thing you want to see. You want to do something, but you have no way of influencing the particular problem.
Being a problem solver, as you are this is indeed purgatory.
Seeing the decline in my son and being a fellow problem solver, I understand how you feel. What is that exact moment when the decision to do nothing and accept the situation can be made? There is no such moment. There is only the pin prick of before or after and after is never satisfying nor will it ever be.
Somehow doing nothing feels like caring less and we are our own worst critics, ready in an instant to beat down our fragile self confidence.

Knowing all this, as you do, is serves little consolation. So we have to trust in a process which is not trustworthy (you might disagree with me on that part). The disquiet inside is what gives us the fortitude and motivation to advocate so strongly, but in the end it is a sense of disquiet which we must live with.
Big hug (if allowed) and otherwise salutations.

Susan said...

Information is always good I think even if you can't do anything about it. Sometimes just confirming nothing has changed still brings some relief. I agree, what would be the point of doing blood work and not getting the results? It's silly. I'm just glad that Jack is stable enough that you can be contemplating such issues as whether or not to do anything with no urgency. Whatever the reason that the stone is causing no pain, it's GREAT!

I love the picture of Eric with Jack. It's also great to see Eric is doing so well swimming.

Can you tie the leash to the wheelchair? I'm glad you are enjoying "dog sitting". Adrian REALLY wants a dog. I wouldn't mind borrowing as a way to try it out. Haha. You are an amazing sister to do it. But I hope you and the kids don't get attached. XOXO.

Anonymous said...

The reason you want to know the results of the test is because maybe, just maybe, the switch in medications the nephrologist made is keeping his stone from growing more.

Christy said...

I would be conflicted, too. Life is infinitely more difficult when our kiddos are in pain. I am a completely different person when Harlie is well vs. when Harlie is ill. I can only guess that my decisions differ slightly, as well. We are only human.

I can't believe how big Eric looks next to Jack. Harlie is 6.5 and I just bought her and Cooper size 5T pajamas. Weird. I know it makes sense in this case. But it's still weird.

Love the dog. I think my dog has helped keep me sane in a crazy world. He's the only member of the family that listens to me. Or likes my cooking.

Can't wait to hear more from you! xo

Ann said...

Eric - cyber hugs are indeed allowed. Thank you for your supportive words, always.