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.
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.