The only thing worse than weekends at Texas Children's Hospital is weekends at Texas Children's Hospital without decent coffee and without an attending hepatologist (liver doctor) in-house or even on call. That being said, we spent almost this whole weekend in the ER at the mercy of the ER physicians, fellows, residents, and interns…
Let me start with yesterday, Saturday, March 2. Around 4:00 pm, Elise suddenly spiked a high fever of 104.4. The only symptoms were the fever, rapid breathing, grunting, and of course the past two days of bloody stools. I called TCH and had the GI/liver doctor on call paged. A GI fellow responded and recommended that I bring Elise in "to be evaluated by the GI/liver" team," so that's exactly what we did. Once we were registered, triaged, and admitted to the ER, the ER doctors ran some labs, a urinalysis, and viral studies to try to determine the source of the fever. Her ears, throat, and lungs were clear. Preliminary results on viral studies were negative. Flu & RSV tests were negative. Her urinalysis was "questionable," but yesterday the ER doctor was not ready to call this a urinary tract infection and/or prescribe any antibiotics. And last but not least, her liver panel was not much changed from her baseline. So the logical thing to do, apparently, was to discharge Elise with an unresolved fever and no plan, other than to "return to ER for worsening symptoms." Wrong.
At 2:00 am this morning March 3, I woke up to Elise screaming and grunting, breathing rapidly, and appearing beet red and listless. Her rectal temperature was 104.9. I gave her a dose of Tylenol followed by a 1-hour sponge bath. She eventually went back to sleep with her fever down to about 101-102. At 8:00 am, I gave her a second dose of Tylenol and called the GI doc on-call again at TCH. I noted him to be giving me the "run around...not-sure-what-to-say-because-I'm- a- fellow- and- my - attending- is- not- a- BA specialist." I was very frustrated and called Elise's pediatrician at home on her cell phone. She was immediately very helpful and was angry to find out that we were sent home from the ER last night with no treatment plan. She called down to the TCH ER and then called me back and told me to bring Elise back there, that they were expecting us. So, again, that's what we did.
We registered, triaged, and were again admitted to the ER. I swear, within 20 minutes, the doctor tells me, "we think it's probably a UTI based on the urinalysis taken last night, so we can probably send you home on an antibiotic, Suprax." Wrong. I explained to this doctor that we were going to need Elise to have a complete work up to rule out ALL possible sources of infection rather than just blaming it on a UTI. I reminded her that in January, Elise was suffering from full-blown cholangitis, while everyone was claiming it was "just an ear infection." After approx another hour of arrogant ER staff run-around, I emphatically stated my expectation: I want a HEP-A-TOL-O-GIST (liver doctor) down here to physically examine Elise and her test results and make some recommendations. And no, it was not sufficient for the ER to speak via telephone to a GI fellow who has never seen Elise or reviewed her case and probably knows as much about Biliary Atresia as I know about football....just the basics. At this point, I was told that the liver doctors at TCH are not always "on call" or assigned to hospital service on the weekends...and this was a weekend where they were not available. Wrong again. THAT, my friends, is not my problem...certainly not Elise's problem...and Elise will not suffer because of it. Not long after this, the GI fellow came in to proudly annouce that he had contacted Elise's primary hepatologist at home, and as a result, now had orders for a complete abdominal ultrasound to r/o signs of cholangitis, peritonitis, or other possible sources of infection. FINALLY....a plan that makes sense! So, we spent the next few hours following through with that plan.
Around 4:00 pm this afternoon, the ER doctor came in to review the results of the abdominal ultrasound. She informed us that there was no evidence of infection in the abdominal cavity which would suggest cholangitis or peritonitis; however, the ultrasound did show that her "right portal vein is smaller." I asked, "WHAT DOES THAT MEAN?" the response? "You'll need to follow up with the liver team this week." Well, I'm trying very hard not to jump to conclusions, but the only thing I can think is that she meant that her portal vein appears to be narrowing, which is not usually a good thing and can cause big complications for transplant.
So in the end, we left the ER this afternoon for the second time this weekend with Elise still running fever of 101.9 and still more unanswered questions than resolutions. At least, this time we have started Elise on an oral antibiotic to treat the infection, wherever it may be.
Now, while I don't have a very clear idea of what THE plan is for Elise as far as addressing her ongoing bloody stools and apparently "smaller right portal vein," I do have my own plan. I have already emailed her primary hepatologist, outlining my concerns. Tomorrow morning, at 8:00 am, I will contact the transplant coordinator and liver center director regarding the events of this past weekend, that of which I have documented a tamed version here in this blog.
I just want answers.....and decent coffee....and effective treatment by Elise's attending LIVER team....none of which seems available on the weekends.
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