July 2006 - The Big Push

Sunday July 2nd, 2006
Well, I didn’t understand that "Emergency Medicine" was a specialty until that day. We met a very conscientious physician who examined Robin and checked the CT scan report (by coincidence the CT scan had been done at that same hospital). He didn't observe anything new in Robin and he prescribed Hydrocodone (a semi-synthetic opioid prescribed for moderate pain). We went home and Robin took a pill. She vomited for the next 18 hours - which we attributed to the pain medication. However, if we knew what was coming on Tuesday maybe we would have thought differently.

Monday - July 3rd, 2006
Most doctors were out of the office this day, after all, last year, 4th of July fell on a Tuesday. Robin didn't have an appointment with the ENT doctor until next week. I the called doctor's office and mentioned blood, headaches and the trip to the ER. We got an appointment at an indeterminate time in the afternoon - "just show up and we will fit you in". It turns out I would rarely have to "plead" with anyone to get an appointment. I would focus on the symptoms, I would be persistent, I would make suggestions. Luckily that almost always seemed to be enough to get in "that day".

We arrived at the doctor's office and Robin was looking pretty ill from nausea. In the waiting room she put her head in my lap. I was toting around a vomit bucket and a towel. We were led to an exam room which had a "dentist chair" style seat for the patient. Robin got in the seat and held her head in her hands.

A young doctor entered the room. I suppose as the junior man he was probably seeing all of today's patients. He sat down, looked at the two of us - Robin with her head in her hands and me with the bucket and towel - and he asked in a quizzical tone "What are you here for?".

We gave him the brief sixteen day history and described the CT results. I'd seen a few Ear, Nose and Throat doctors over the years for allergies and we knew what to expect - a nasal endoscopy in which the doctor inserts an impossibly long scope into your nasal passages. Instead the young doc simply flared Robin's nostrils and used a flashlight - hey, I could have done that at home! After a perfunctory exam and a review of the CT results (we were already carrying her records to appointments) the young doc seemed to make a second misstep (in retrospect). He changed her prescription to Cipro - an antibiotic commonly prescribed for urinary tract infections. Between Robin's background as a nurse and my background with doctors visits, we weren't getting good vibes about these suggestions.

Well, we went home feeling not that much better (in fact Robin felt quite nauseous).


Tuesday - July 4th, 2006

Adrenaline ride

The next morning I awoke in bed alone. It was light out. It was morning. Hmmm...Robin's out of bed already. Hope she's feeling better today.

I made my way downstairs and saw her laying on the couch. I asked how she was doing and as I got closer I could see something wasn't quite right. "What's wrong?". She had this expression as if she'd done something wrong. As I got close-up I could see her right cheek was swollen! "You OK?". I felt shocked that something seemed wrong, yet she hadn't woken me up.

She sat up and we checked out her cheek. Wow - it was definitely swollen. "Should we go to the ER?".

"Well" she said, "the pain had lessened a little". We talked about it and we decided we would wait and see what happens. By 3pm I was getting ready to go for a thirty minute bike ride - about six miles. By this time we had actually observed that the swelling was increasing. We'd decided we would go to the ER, but Robin said "you go do the bike ride and then we'll go".

As I got ready Robin talked to a neighbor over the fence. They were pretty good friends and he was shocked to the see the swelling. He was the first to notice that her right lip was beginning to droop (presumably from pressure on her facial nerves). Robin explained, "yeah we're going to go to the ER after Greg goes out to bike six miles". The neighbor looked at us and his jaw dropped. I expect he didn't understand our nonchalance about her symptoms. Maybe Robin and I were practicing our denial skills?

Anyway, I biked the fastest I had ever biked in my life. I road the 6.3 miles in nineteen minutes. Adrenaline drove me up the hills and had me cranking on the flats. I averaged 19.3 mph on the bike computer. Thirty minutes after we’d talked to our neighbor I was showered and we were in the car on the way to the hospital again.


Discontinuity of care

Oh boy, a new doctor. OK, now we had a seventeen day history to describe to the doctor - and the story was getting longer to tell: two weeks ago intense headache and bloody nose, Sunday we were in the ER, the Hydrocodone made Robin vomit for 18 hours, Monday we saw an ENT. Can you help us?

Well, too many cooks in the kitchen. Since none of the meds had helped, this doctor concluded that Robin had a blockage in the salivary duct in her cheek and thus the rapid swelling.

He also concluded that she needed more pain meds! The Hydrocodone had made her ill, so he gave her two new prescriptions. One script for a larger size Hydrocodone pill and one script for an anti-nausea medication so the Hydrocodone wouldn't make her so sick.

Well, this doc wasn't making a great impression, mainly because of the pain med script. After being sick Monday, Robin would never again take Hydrocodone tablets. She was going to take lots of Advil and simply tolerate the remaining pain.


Weds - July 5th, 2006

Finally someone who doesn’t know!

Wednesday morning we awoke with a battle plan. A call to our family dentist's office - they said "come in right away" - and a call to the ENT office. I started the call to the ENT receptionist by saying "the doctor said to call if there was any change". I described the swelling cheek and the visit to the ER. She gave us a 10am appointment.

The visit with Tom (our dentist) was helpful. He examined Robin's mouth and stated that he didn't know what was going on in her cheek, but he didn’t think it was a blocked salivary duct and he didn't think it was a dental infection. Finally! We were strangely relieved to find a medical professional who admitted he didn't know! Astounding!

Then we went to the ENT office and met with a new physician (at the same practice) who obviously had more years and experience than the young ENT doctor we had seen on Monday. We gave him the eighteen day medical history, but we neglected to mention the morning's dental visit.

This new fellow also skipped a nasal endoscopy and simply used a flashlight to look up Robin's flared nostrils. He disagreed with all the prior doctors. In fact, he concluded that he had identified the problem! He explained that rather than a sinus infection, Robin simply had a dental infection and he wanted to change her antibiotics again (to Avelox). I said that was all well and good, but (by the way) we had just come from the dentist office. Well, the doctor went on some more about his certainty and then he asked for the name of the dentist so they could confer. We could hear him in the next room, on the phone with the dentist, discussing Robin's situation.

We left feeling no better. In the car I said to Robin "Let's go home and call the dentist again". We arrived home and found a message on the answering machine. It was from the dentist's office. While we were driving home they had called and left a message asking us to return so Tom could take a look at Robin again. Over the coming months we would see the dentist every week, sometimes twice a week. We would call Tom at home and on his cell phone, during the day and in the evening. The folks at that office probably never realized the comfort and the security they afforded us during that period of uncertainty. They helped keep us focused and driven while so many other caregivers promoted various theories about Robin's mystery illness.

So we saw Tom again that day. This time he took an x-ray. To him, the x-ray didn't support either the theory of dental infection or the theory of a blocked salivary duct. He still wasn't absolutely sure what it was and he wouldn't rule anything out. Maybe we needed to give it a few days and the answer would become obvious? Maybe we needed eventually to see an oral surgeon?

Thursday - July 6th, 2006

Well, we decided to not stop pushing. Thursday morning I called a friend who happens to be an oral surgeon. He said "Come to my office in the afternoon. Skip the check-in process and paperwork, just tell them I'm expecting you."

What a gift for someone with this expertise to lend a hand! Mark examined Robin and took x-rays. For the second time in our five day push, Mark essentially mirrored what Tom had said. He didn’t believe the issue was anything that had been diagnosed to date, yet it was nothing he had experience with and therefore couldn't provide a firm theory.

These two fellows, by summing up what they knew and what they didn't know, turned out to be the most helpful practitioners we could have met. It was disconcerting that they were leaving open the door for our hypotheses of cancer, yet it was helpful to us that they weren't throwing out any distracting ideas without any evidence.

We'd seen six doctors in five days. We didn't feel any better about the situation, but our questions would have to wait another two weeks. On July 18th, 2006 we finally had an appointment scheduled with an experienced ENT. He wouldn't give us a definitive theory either, but he would schedule Robin for his next available surgical slot on July 28th, 2006.

In the first week of July 2006 we still weren't certain about the root cause of Robin's symptoms. Things would only become more unsettling through July as her cheek and the gums in the area of her upper right molar continued to swell and expand. On July 18th the surgeon would give us more medical terms to work with. He would tell us that it was unlikely to be sinus cancer but he wouldn't argue strongly against our theory.