Monday, August 2, 2010

Biology Lesson

This has been one abominable day.  First thing, we noticed that Tristan's ginormous goose egg is twice the size that it was when we put him to bed last night, and it has a new rainbow of colors.  Yesterday it was "only" about the size of a quarter, and maybe an inch high - and looked terrible at that.  I covered it with a band-aid to quell the constant barrage of ANNOYING questions at church, namely "What happened?"  HE FELL.  HE JUST STARTED WALKING.  That having been one of my pet peeves for years (ever since I raised another hemophiliac through the toddler years, and a "normal" monkey boy), I make a point of NOT ASKING how the wounds on the heads or faces of toddlers came to be.  I can put two and two together and assume that the child FELL.

Today the goose egg is more like silver-dollar size, with reds and blues all over.  Yesterday (Sunday) we called the ER on base to see about having them give him factor, but they didn't want anything to do with us and said to wait on the referral (to a local Korean hematologist) that we've been waiting on for 10 days.  Oh, and the doctor I spoke to kept referring to Tristan as my "daughter".  A student only had to pay a little attention in high school biology to know that ONLY MALES get hemophilia.  It's the classic X-linked recessive trait (or "sex linked"), so it is always used as the example.  The ONLY way a female could get it is if a carrier (such as myself) were to breed with an affected male (a hemophiliac).  A girl would have to be CRAZY to do that, because then every male child would have it, and the girls would have a 50/50 chance of having it, along with being carriers.  My dad even said when we were growing up that we girls (who are obligate carriers, because my dad has it)  WOULDN'T be marrying any hemophiliacs, ha ha.  So, I could probably count the number of female hemophiliacs in the world on one hand.  Although that link mentions symptomatic carriers, but they still don't have the actual disease.  It also says that in 1/3 of the cases it appears to be a spontaneous genetic mutation, but in reality, most of those cases come from so many generations of carriers (without having an affected son) that they just don't realize that their family had the genes for it when it finally pops up. 



Anyway, when we saw how awful the hematoma was this morning, we decided that I should take him to the pediatric clinic where at least they've seen him a couple of times now.  The dose of clotting factor that he got nearly two weeks ago only would have lasted in his system a day or so, and it's gotten bumped a couple of more times since then... (after all, he still toddles) so it's not healing and he needs another dose of factor.  The doctor had me come back to his office to discuss it.  He admits that he knows virtually nothing about it and then magically Dean walked in and had finally gotten the referral to a big university hospital here.  It was just after 9am by then, and the appointment was for 11 today. 

Foolishly, we thought it would be a good idea for me to go home and grab a few papers to get Hunter enrolled in school on the base, then I'd come back and pick up Dean from work.  The doctor even gave us written directions to the hospital.  So, I drove off into oblivion, with our $400 GPS, and got hopelessly lost.  I missed a turn or two; the GPS gives the most abominable directions imaginable, such as "take the overpass next the underpass" instead of "exit right".  Obviously, some Korean sat around with a Korean/American dictionary and came up with translations for these phrases, so it's nearly useless.  The pictures are bewildering on the screen, and the city is so screwed up that someone like myself who only knows one direction (up), doesn't do so well.  And, I don't have a cell phone yet, so I drove around the whole city, apparently, and realized there was no getting home or to Dean's work, so I found a St. Mary's Hospital on the GPS and went to it. 

But, alas, after finding an English speaker, I learned that we had come to the wrong St. Mary's Hospital, so we scheduled an appointment for tomorrow afternoon at the correct one.  I could have just died.  I managed, with the GPS, to get back to Dean's work.  I figured he thought I was dead or something, and indeed he had been terribly stressed about us and had gone to the hospital, where they told him that I had gone to the wrong hospital.  Lesson learned - he should have just gone with me the first time.  So we did a trial run tonight to drive to this hospital so I can find it tomorrow.  Most streets don't have names here, and if they do, they are in Korean characters anyway, so imagine driving around like that!  Anyway, we went back to the hospital on base and the good doctor, between his regular appointments, managed to consult with a hematologist by phone and gave us another dose of the factor we had brought.  Of course, I had managed to bring the wrong factor for Tristan; I had grabbed an old one of Hunter's that was actually expired, and not having a cell phone, I asked the receptionist to call Dean for me, so I told him what was up and he left work (again) to run home and get the right factor and bring it back to the hospital, then trudge back to work...  He wondered aloud if the awful day would ever end.



The day was basically a nightmare, but we stopped and got Rotiboys on the way home from our test run.

3 comments:

The Merrills said...

Hope this disastrous experience isn't routine while you're in Korea

ady said...

Oh, that's so terrible! Sorry to hear about your bad, bad day - hopefully your appointment tomorrow goes well!

KaNdRa and JaReD said...

What a day. Poor little guy:(( I had no clue about hemophelia. Pretty interesting, but horrible to live with. I couldn't even imagine. You might have more days like that(sorry) but just think...at least you know you are able to make it through it:/
Hang in there.