What they learn in Med School

Every so often I search the web for 'holoprosencephaly' just to see if anything new has come up. A week or so ago I came across the blog of a medical student who posted about encountering severe case of HPE in a terminated pregnancy. The baby had severe facial deformities but no chromosomal anomalies. This med student was amazed that otherwise the body was perfectly normal and was even born alive. She noted that she is unlikely to ever come across HPE again in her career. I posted a comment to her blog, just to let her know that not all HPE births are so severe and told her a little about HPEkid. The student wrote back that she never knew that HPE's could live! "We were always taught otherwise". This is pretty depressing to hear; that even in this era of so much better diagnosis and information, med schools are still teaching students that HPE = death. I totally understand that the VAST majority of instances HPE do result in death of the fetus. But doctors are trained, hopefully, to treat the living and it would be nice if they knew that there is a substantial population of HPE kids out there who do lead meaningful lives.

October Update

C has been much improved the last 2 weeks, with markedly less congestion and gagging. Of course it;s all relative. Nearly every time she lays on her back for diapering she starts to hack and cough. Nearly every evening as we sit down for dinner she begins to fuss in her chair and retch. So we normally end up taking her back to her room while we eat. It's odd really, because she can be fine all afternoon, but the instant we pull out the chairs at the dinner table, C starts crying, goes all stiff arching her back and threatening to vomit. Back in bed, lying down, she settles down and is OK. The obvious explanation is that since she can't eat, C gets upset sitting there watching everyone else eat, and I think there is a lot to this. She's obviously aware that she's missing out on something. She clearly shows interest sometimes in wanting to taste things - of course whenever we try this she gags and spits most of it out, she just can't control her muscles to chew and swallow.

Yesterday we noticed a coin-sized bruise on C's lower back above her right hip. Most likely someone (Me?) banger her into the armrest while loading her into the wheelchair. Doesn't seem to bother her. C. was also in some discomfort last night (although she slept fine), had some brown in her residual and was grining teeth this morning. Think she needs a B.M.

AM Giggles

So I woke up about 4:5am to the sound of C back in her room giggling. Hopefully it meant she had some weird dream, not that she's really in pain. She's had a rough last few weeks. Her mid-sepetember cold is still lingering. She coughs all the time and just can't seem to clear out her lungs. What's weird is that she is OK lying down (side, not back!) but as soon as she is upright she starts hacking away. All yesterday afternoon she coughed and threatened to vomit, then finally at about 7:40pm she threw up a huge amount. She was happy, but still trying to cough up stuff after that. She slept fine, though, until the laughing fit. Anyway, I noticed the residual in her stomach was yellow-ish, and she did not urinate all yesterday afternoon. Sunday was last day on the antibiotic so she should be getting better by now! HPEmom wants to get an appointment with GI doc and re-start our discussions about fundoplication. I agree we probably should do that, but just am not convinced the surgery is going to get at the route cause of things.

Not the Flu

C has had a low grade cold for about a week now. It began as her sicknesses usually do with fever and throwing up as soon as anything hits her stomach. This only lasted a day (last Friday into Saturday). Since then she's had a lot of congestion in her chest and throat, and she tends to spike a mild fever most afternoons. She coughs constantly, especially in the afternoon and night. Coughing brings up mucous and phlegm which she then has trouble swallowing, so she throws up. Lately the coughing at night and first thing in the AM can last for 20-30 minutes. The daily debate is: do we send her to school? Generally once she is up and has cleared out whatever she needs clear she is OK for the day. She started on antibiotics yesterday to treat for assumed respiratory infection. Am also concerned about urinary infection: As of this AM she hadn't peed since I got home at 6:00pm yesterday.