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Autonomic Dysfunction and International Relations

February 26, 2010

What a difference a week makes…Last week was filled with a trip to the DuPont ER, a sick visit to our pediatrician, several stops to our local pharmacy,  a lot of sleepless nights, worrisome days, a really “good” appointment with a new doctor at DuPont, all of our usual activities minus Lucy’s  music class and therapies, and ended with our little red head covered from head to toe in some sort of viral rash that made our usually pale looking girly look oh so uncharacteristically colorful.  Conclusion, Lucy probably had Roseola, a common infantile virus, that caused her high fevers. However, nothing is common when it comes to kids with mito.  These fevers caused her heart rate to soar which caused her body to be even more exhausted than expected. This exhaustion  contributed to her decreased motility which resulted in her being uncomfortable and not wanting to eat.  On top of the Roseola we discovered that Lucy had strep bacteria, this time in her throat not her g-tube site, which resulted in us adding an antibiotic to her list of medications. This in turn has caused her to have some pretty nasty diapers this week.  There was also some concern that Lucy had some sort of  pneumonia because her chest film showed infiltrate in her right lung.  We now think that she had another aspiration pneumonia due to the fact that the infiltrate was in her right lung(this is where aspiration pneumonias are found) and she had no typical viral pneumonia symptoms.

Now a week later, Lucy is feeling much better.  She is sleeping better(by Lucy standards) and back to eating her Cheerios again.  We are almost back to her “normal” feeding schedule, she is still experiencing some discomfort when we are running her feeds for long periods of time.  I am hoping that when she is done with the antibiotic that this discomfort will resolve.   The one issue that we have noticed with Lucy post illness is her body’s inability to regulate her body temperature.  She has swings in her temps from over 100 degrees down to 94 degrees, autonomic dysfunction is so bizarre.  She is not acting sick anymore, but is more tired and irritable than usual.  I can’t even imagine how her body feels on a daily basis, of course she does and she just goes on! 

I have to admit that I too am more tired and irritable than usual, but life goes on and on it goes....  About a month ago I was asked if I could cook a Japanese dinner for some Japanese associates that were coming over to work with my husband and a group of his colleagues.  Being raised by a Japanese mother who taught me the virtues of being a good host, I agreed.   Yes, it was a lot of planning, shopping, house cleaning, and preparing.  Looking back I’m not sure how we were able to do it… it was in many opinions a huge success!  I think I impressed the Japanese associates with all of my Japanese accoutrements and cuisine.  One of them told the translator to tell me that I made better sushi than his wife.  I told the translator to tell him that I ordered the sushi.  She said she would not tell him that,  she said lets just keep that between you and me, and told me that I deserve to take credit:). For me it was a HUGE accomplishment to pull off the event, especially considering the week we had and the very few hours of sleep we were working with.  My dear friend Dianna came to my rescue on Monday afternoon(party planning is her thing), realizing that I could probably use an assistant, and also she was a bit nervous for me.  She knows that I very often have to do all of my work with one hand because my other is holding a baby.  Without her, I’m sure I would have been struggling to get everything done in time.  My friend Beth helped out as well,  running around for me on Monday getting many of the last minute items and cleaning 3 lbs of snow peas, I’m pretty sure that she will not be preparing snow peas anytime soon.  Drew told me that many of his work associates thanked us over and over for hosting, adding that it helped to build relations between the Japanese and Americans.  I am happy to have had a role in international relations; however, I think I will retire from international relations for a a while and focus on getting back to “normal” domestic issues, whatever those may be.

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megan said...

You are amazing! Love to Lucy! Might join you at music....don't be shocked to see us there!

Amber Greenawalt said...

Nicole, can you send me your e-mail address? I'm doing a project for mito and would like to include Lucy :) My e-mail is