Thursday, May 6, 2010

Seven Years and Counting

Craig C. DeWolfe, MD, MEd
Children's National Medical Center
Sheikh Zayed Campus for Advanced Children's Medicine
111 Michigan Avenue, NW
Washington, DC 20010


May 7, 2010

Dear Dr. DeWolfe,

My name is 12tequilas. We met on May 7, 2003, and ever since then, I've been wanting to express my gratitude for what you did for me and my family. You may not remember us from 7 years ago, so let me give you some background.

My son Einstein was born on February 22, 2003, full term and healthy. Everything was fine until around his seventh week of life, when he got some sort of gastrointestinal malady that has never been definitively diagnosed. My little one was having severe diarrhea, and because of some misleading advice from the late-night nurse hotline, by the time we got him to the emergency room, he was in hypovolemic shock [that's a dangerous level of dehydration]. He was stabilized in the ER by the superb pediatric emergency medical team at Shady Grove Adventist Hospital, who had to administer fluids through intraosseous infusion [an IV line goes into a vein, an IO line infuses fluids directly into a bone. Yep.]

Einstein was not nearly out of the woods. He had some organ damage and his itty bitty guts were a mess. He was admitted, connected to various monitors, and tested; everything from lumbar puncture to brain scans. He needed red blood cells and platelets. He couldn't eat because it all went right through him. After a week it was decided that he should be transferred to Children's National Medical Center in D.C.

At Children's, Einstein was visited by medical staff from various departments. The Infectious Disease folks tested him for rotovirus three times. Genetics experts compared all of our ears. And, of course, there was the Gastroenterology "team," headed up by a mad scientist who shall remain nameless but whose initials are "Ali Bader." I don't want to crack on your colleagues, Dr. DeWolfe, but it is important to this story to note my perception that Bader and his team treated Einstein like a case study and seemed to want him to have some sort of heinous disorder. "Cystic fibrosis" was everyone's favorite pick, and it was sometimes talked about as if he was already diagnosed with it, even though he was too little then to undergo the definitive CF test. This bothered me, not only because people DIE from cystic fibrosis, but also because he had only one symptom--diarrhea. He exhibited NO OTHER indicators for CF whatsoever.

The doctors figured out that Einstein needed to be taken off all food by mouth. He'd had total gut rest at Shady Grove, but it hadn't been for long enough. After he was on TPN [that's Total Parenteral Nutrition, which is complete sustenance, rather than just fluids, through an IV] for a solid period, he was gradually put back on formula, and things improved as far as weight gain. When all this began, he'd gone all the way back to his birth weight.

Lots of other stuff happened during our stay and I have many stories, but I will fast forward to the morning of May 7. The GI team visited me early that morning; I believe I requested their presence because I wanted to know what was going to happen next. The woman who acted as the team's spokesperson (I never knew who she was really supposed to be), rattled off a list of tests they wanted to perform, or to repeat. When they left, I called my husband at work and said, tearfully, "we are never going home."

A bit later you walked into our room. It was the first day of your rotation as attending on our floor? wing? area? (Not sure. It didn't matter. You were our doctor.) You entered, introduced yourself, and looked over at your tiny patient, whose face lit up. He broke into an ear-to-ear grin and his eyes sparkled. It was as if he knew that you were his guardian angel. You smiled back, of course, because how could you not. Then you did a quick exam.

I don't remember whether it was you who gave me the news, or if it was an intern or resident that you sent, but after checking out Einstein and his chart, you determined that Einstein should be discharged immediately. He was not sick, you said. He was no longer hooked up to anything. He was being fed by mouth; it was super-special formula (which, judging from its price, must have been made of edible gold), but we could leave with a prescription. We could follow up with Dr. Bader at the outpatient clinic. There was no reason for Einstein to be in the hospital anymore.

Over the weeks that followed, our pediatrician eventually let us go back to nursing, and recommended another pediatric gastroenterologist, the esteemed Dr. Lynn Duffy. Einstein was six months old by the time we could get in to see her, but it was worth the wait. She told us we could start him on baby cereal, waved a magic wand, and Einstein was a normal healthy baby again.

I have been wanting to send you our gratitude formally, and it seemed appropriate to finally do so on this, the seventh anniversary of May seventh.

In short, Dr. DeWolfe, you rock.


With love and respect,

12tequilas, husband, Einstein, and Pumpkin


encl.: photo of happy, healthy, gap-toothed and mohawked 7-year-old Einstein, and maybe some cookies or something, what do you think?

1 comment:

Maura said...

I want to hug him too. I remember hearing about what you were going through and my heart just hurt for all of you. I am so glad your story had a happy ending.