Frustration

Gracie had an appointment today with a new doctor, someone we’ve never met before. Ever since she had that MRSA infection in June, her middle finger has been deformed. The redness, streaking, heat, etc. is all resolved, but the tip of the finger is mega swollen and red. I’ve been concerned that the infection didn’t resolve, but her infectious disease doctor assured me that it did – her x-rays were normal and her blood work was normal, and if she had a bone infection one or both of those would be affected. But I was still concerned about the redness and swelling in the tip of that finger. I thought perhaps the fingernail was ingrown – it is growing in perpendicular to how it should be – so I asked her primary care doctor to look at it and perhaps remove the fingernail. Little did I know that fingernail removal is a very specialized procedure!

After many days calling specialists looking for someone to remove her fingernail, we were referred to pediatric surgery at the nationally-renowned children’s hospital in town. This is the hospital we switched from – the hospital where the infectious disease P.A. lied in her medical report. The doctor looked very professional in his online profile – the kind of board-certified physician with a long and distinguished CV – but I was nervous to meet him. Physicians with long and distinguished CVs tend to think they’ve seen every possible condition and do not attempt to understand Gracie and her unique issues.

At the appointment, the doctor examined the finger and said he thought it looked infected. He did not want to open up the finger, certainly didn’t want to open the nail bed, unless the possibility of osteomyelitis was ruled out by MRI. He offered to refer us to infectious disease at that hospital, but I declined, saying (perhaps foolishly) that I trusted her ID doc from the other hospital much more than the docs there. He was shocked; I could see the surprise behind his calm demeanor. I told him that she’d had x-rays and blood work two weeks before and it was normal. He told me I could come back if I got the films and he’d go from there. I left his office frustrated – it felt like a total waste of time. I don’t know what he could have given me other than what he did, but I felt like he gave us nothing. And now I’m second-guessing each minute detail, wondering if he believed that she doesn’t feel pain, wondering if he thought somehow I was causing all her symptoms.

The real sufferer, of course, is Miss Gracie. IS it infected? I have thought all along that it looked bad. Can I rely on the x-rays and blood work? Will she have to undergo sedation for an MRI? Is an MRI even necessary when the x-rays and blood work are normal? Is there another doctor out there who can help us, or do I just have to wait and watch until it gets worse and someone will do something?

The irony is that this is the reverse of the situation when the ID doc from the big hospital lied about me. At that time, Gracie’s index finger was swollen and red. We had gotten x-rays that showed osteomyelitis not only in the index finger but also in the thumb – a previously unaffected digit. The ID doc did not think Gracie needed IV antibiotics, and eventually she and I had what I thought was a sort of professional disagreement about the course of treatment – I thought Grace needed IV antibiotics, she thought the orals were sufficient, despite the worsening. I left her office thinking that, although we were both upset, it had gone okay. She wrote that I was yelling, insisting Grace be admitted and given IV meds despite the lack of clinical evidence requiring admission. I didn’t yell – anyone who knows me knows I’m not a yeller. I would never disrespect someone in authority by yelling at them. It hurt not only me, but Gracie – after all, these are her medical records, and it could prejudice doctors against her if they thought her mother would go ballistic on them.

But I digress. This time, I was the one with the clinical evidence, trying to convince a doctor that despite the way it looks there must not be any infection. I left his office so frustrated, so disheartened by the lack of help. I realized as I was driving home that I leave about 80% of all experiences at that hospital frustrated and needing help that no one will give. I leave the other hospital frustrated about 0% of the time. The doctors there talk to me, work with me, explain their reasoning to me. Even when I’m worried about the outcome, I leave knowing that we are a team, that Gracie is getting appropriate care and I can trust them.

So now we’re back to square one. I called Gracie’s ID doc and emailed her pediatrician. I’m sure one or both of them will want to examine her. And maybe good will come of it – maybe we’ll get someone to pay attention finally. But today was awful, and help has yet to come.

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