In general, I try to look for the positive, especially in trying situations. Sometimes I have to try harder than others. But I'm afraid I have very little positive I can say about last week. I agree with everything Dave said in his post The Mayo Mystique is a Myth.
I always try to keep in mind that what we see is only part of the big picture - that things happen behind the scenes that we don't know about. I kept thinking throughout the week that this must be the case - if the endocrinologists thought this was neurological and the neurologists though it was endocrine, the coordinating internist would be talking to them and getting them to talk about other possibilities. It really never occured to me that at this point that all these symptoms would simply be dismissed, that he'd be told "on average your blood pressure is fine", and that "if there was anything seriously wrong, we would have found it." As Dave said, the internest barely knew Shawn's initial history, and the most he did with the various reports was scan them over and tell us everything looked fine. Despite commenting on the first day about how helpful the medical write-up from his doctor in Chicago was, he didn't seem to have read much of it. His logic also floors me - his original explanation for wheezing and shortness of breath was that Shawn had asthma - then after testing for asthma he reports "you don't have asthma, so you're fine." But what about the fact that these symptoms are still there and that they now aren't explained by asthma? It just felt like he wasn't doing anything other than looking at little pieces, the big picture of a real person sitting there with a problem seemed to be missing. Where was the intellectual curiosity if not the human compassion? I'm afriad in our dealing with him, we saw neither.
Those of you who know me know that I'm rarely speechless, but in his office I found it hard to form a sentence. I actually found myself stuttering at one point when trying to ask a question.
So where do we go next? As Dave said, we are so incredibly blessed to have a doctor here that does not believe that Shawn is fine and all his symptoms are harmless or normal. I think Shawn put it best when he said he wanted to go back to Chicago "where we have a doctor who actually cares." I seriously do believe he has been sent to us as an answer to my prayers. I will never be able to fully express how grateful we are to have him as Shawn's doctor. He has always exhibited both the compassion and the intellectual curiosity which makes him such a fine doctor. I just wish we could have found more like him at the Mayo who could have helped him in his search for the best way to treat Shawn.
After discussing it all yesterday, we've decided to go ahead with a biopsy of the thymus. Meanwhile, Shawn returned to school this morning and will spend this next week trying to forget about last week's ordeal before coming back here for the biopsy, sometime the week of the 24th. It will be a needle biopsy, performed as an outpatient procedure at Northwestern. I'll put more details here once I know them.
3 comments:
I am astounded by the lack of compassion, dedication, and professionalism. It is disheartening. I hope Shawn can draw new strength from his campus life and sweetheart to recharge. I am impressed with how quickly you've set up the biopsy for next week. Good luck. You are in my prayers.
Likewise, I'm sort of stunned to read this. If I didn't know you, I might wonder if you'd showed up with an attitude or something. But I know that isn't the case. At any rate it sounds like you've moved on with your plans, which is probably the best thing you can do at this point. Better luck with the next step.
We showed up with nothing but hope. Unfortunately, we left with nothing.
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