Update from Keith - July 21, 2008

Things have gone so well lately, the train was bound to derail. Last night it did.

Taylor was really great this weekend. She had a lot of energy for a chemo weekend until last night when she crashed a bit. We weren't particularly surprised, though, since she was only 48 hours post-chemo.

Just before we were going to go to bed, at about 11:15 Sunday night, Kris grew concerned about T because she could hear her panting in her sleep. This has been a sign of fever in the past. Sure enough, Taylor spiked a 39.2 (that's about 102.5 Fahrenheit).

So, we put the wheels in motion. Kris called the Hem/Onc fellow on call. The fellowships last a year and the new fellows started 7/1. I think it's possible that we know more about cancer than they do (that's probably a little unfair); certainly we know more about the hospital than they seem to. In any event, there was no basis for us insisting on getting a bed on 4W directly as Taylor was probably not neutrapenic since she had only had chemo 2 days before and it usually takes most of a week for her counts to plummet. Thus, it was back to the Emergency Department; possibly my least favorite place in a hospital where I have suffered through all of my life's worst moments. It's that bad.

The one thing that they do right in the Emergency Department is that they let the cancer kids through to the triage waiting room right away, instead of making them stay out with the rest of the sick kids (and possibly get more infected). As soon as we got there, they let us in to Triage.

I carried Taylor up from the car and it felt to me like she was burning up.

Once in Triage, we waited while the kids in front of us were checked. It was the usual non-emergent sicknesses for which parents seem to bring their kids to the Emergency Room. We waited through a kid with a small rash, and another with a light fever (neither of them were admitted to the Emergency Department; they were treated in Triage) before it was finally Taylor's turn. As always, they weigh her and check her vitals. Her heart was racing--166 (although that's below some of the numbers she put up in the dark days of February and March)--which often signifies infection for her. Her temperature was still high--38.8 this time. The triage nurse gave her some Tylenol for her fever and directed us to the Emergency Department itself.

We probably should have left then. The Tylenol was the last useful thing they did for Taylor.

Shortly after arriving in our spartan ED room, a doctor came in to take her history. This drives me crazy. Her history is in their computer, in their medical files, all over that hospital. I get that it might be a little more efficient for them to just ask each time instead of read it, but the vast majority of the questions seem ridiculously irrelevant. Every single time they ask about how Kris's pregnancy was with Taylor as if some remnant of that event 6 years ago is causing her current fever instead of the cancer they diagnosed 6 months ago. In the entire interview, the only relevant question they ever ask is whether she has any allergies to medication. Never mind that it is all over her file and that they require her to wear a red wrist band which says "Allergy" on it every time she gets there, they still need to ask us each time. Last night the triage nurse noted it first (at least he looked at the file), and then the doctor asked about it, too (meaning she neither read Taylor's computer file nor the paperwork the triage nurse generated some 10 minutes before).

After taking her medical history, the doctor explained that she wanted to do a CBC (no surprise) and a chest X-ray. This is a favorite diagnostic tool in the ED. This is not the first chest X-ray Taylor's been subjected to down there. This time, though, I didn't mind because Taylor has had a deep cough and I was a little worried that there was something in her lungs. After telling us the plan, the doctor was gone.

The next couple of hours went by slowly. The nurse accessed Taylor's port (she didn't throw up this time) and started her on some hydration. She also took the blood for the CBC. Taylor slept much of those two hours. Kris and I just sat there while our chance at sleep slowly ticked away.

Finally, around 3, the doctor (I'll call her Dr. Genius) came back in. And while I'll never know for sure if Dr. Genius mastered the intricate (but irrelevant) facts of Taylor's birth (37 weeks, C-section, breach, Kris had gestational diabetes), I can say with a high degree of confidence that the entire medical history was wasted on her. Why can I say that? Because after two hours of presumably intense study and deliberation to arrive at Taylor's treatment plan, Dr. Genius recommended . . . (wait for it) . . . yes, you guessed it, she recommended treatment with an antibiotic from the same family of drugs that T is allergic to. Two hours it took for this brilliant analysis. I'm starting to think high school shop class is more technically difficult and intellectually rigorous than med school. At least putting in the wrong kind of gas won't kill you.

We thanked the doctor for her bold plan but pointed out the one tiny flaw. The doctor thought about it some more and then decided that she should probably give Taylor an antibiotic she is not allergic to. Discretion, as they say, is the better part of valor.

The chest X-ray still had yet to be completed. Thus, I took Taylor over to radiology a little after 3. You'd think it would have been empty at that time of night. But with X-ray being the ED's favorite diagnostic tool, there were 3 kids in front of us. Thus, we sat down in the waiting room and watched the food network, the channel the TV was broadcasting (this was actually appreciated; while the hospital can do many wondrous, technologically advanced things, they have yet to solve the mystery of how to bring cable to the TV's in the Emergency Department; thus, the beautiful flat screen LCD displays hang on the walls of the ED rooms, largely unused, although you can put a DVD in them). Taylor finally got her chest X-Ray after 15 minutes or so and we went back to the ED.

The nurse assured us that all she needed was for the pharmacy to send up Taylor's antibiotic and she would start her up. Unfortunately, it was a drip, not a push, so we knew in advance it would take 30 minutes or so for her to get the full course of the medicine. I decided to head over to the 24 hour McDonald's in the hospital to get a Diet Coke. At this stage in the night I was a Zombie and icy, bubbly goodness seemed exactly what I needed.

I got to the McDonald's and ordered a large Diet Coke. My mouth watered at the promotional pictures of icy cokes sweating through soda glasses (as if McDonald's served Coke in a glass). I was so caught up in my Diet Coke fantasy that I didn't hear what the cashier said at first: "We don't have Diet Coke." OK, how about a Coke? "No, the soda machine isn't working." Sprite? "No." What about Hi-C? "No." Water, OJ, and coffee was all they had.

Are you f'ing kidding me, I'm thinking. How could they not have a Coke? McDonald's without Coke is like McDonald's without French Fries. It can't happen. Worse, the posters of the icy, sweaty, glassed cokes taunted me. How could they do this to me? Only at CHLA is this possible. Even the McDonald's is part of the eleventh circle of hell which encompasses the rest of the place. I left empty handed and broken hearted. At least Taylor will have started her antibiotic by now, I thought. Maybe we'll get home before 5.

No such luck. When I arrived back at the ED, Taylor still had not started the antibiotic. Maybe the pharmacy was backed up or something, I don't know. Hell, they were probably out looking for Cokes.

Finally, after another 30 minutes, Taylor started her antibiotic at about 4:05. It was 30 long minutes going in. We left the hospital about 4:40. Turns out parking is the same charge from midnight to 4:45 AM as it would be in the middle of the afternoon when people actually want to park there. I parted with $4 dollars and we went home.

At least Taylor slept most of the time at the ED. Kris and I finally hit the sheets about 5:30. Both hours of sleep were wonderful.