Thursday, August 12, 2010

That ain't no ear infection

This post started out as an update on how Harris' prophy is shaping up.  Here is the abridged version-  if we are measuring how effective we've been at protecting his joints we get an A+.  We are the valedictorians of joint protection.  If we are measuring how effective we've been at protecting his quality of life, then basically we are the borderline-highschool-drop-out guy that Judd Nelson plays in "The Breakfast Club".

Here's what I learned this week:

  • If you are interested in being a perfect parent, sign up for a different health condition.    I re-realized that I will not always know what is going on with my baby after he cried for about 6 sleepless hours because he was suffering a muscle bleed that I mistook for an ear infection.  As you might imagine, the next morning's appointment with the pediatrician didn't do a whole lot to solve the problem of the arm that had (by that time) swollen to something that looked like it belonged to a sumo wrestler who is retaining water.  (When I finally got a hold of my husband to tell him that I was headed in for what promised to be an awesome morning at the hospital... there were tears of guilt.)  
  • I am so sorry for my Grandmother. It must have been so hard for her when her baby was suffering because of a bleed and there was not a thing she could do about it.  No therapy to offer.  No treatment.  No doctor to ease her child's pain.  I cried for her not being able to help her baby like I could help mine.
  • My sisters and I have chosen sides in our ongoing debate about whether hemophilia is a disease or a condition.  I say that it's not a disease unless it can kill you.  My sisters say that I'm full of it.  Wikipedia agrees with my sisters.  My hematologist ( who knows everything) agrees with me.
  • (Unless it's an emergency) a 4 stick infusion just ain't worth it.  You'll probably cause more harm than good.  (see bullet point number 1).
  • I hate rubber tourniquets. (see bullet point number 4).  Seriously.  I mean even my dad used velcro and that was back in the day.  Maybe I'll have a prophy shirt made that says "Keep your rubbers to yourself". 
  • As I was yelling into the speaker phone that was wedged underneath the shoulder strap of the seat belt so that I wouldn't get a ticket for talking on my cell, I thought how good it is to have sisters that you can call and tell what the treatment center said... so that they can tell you to call back and "make sure you ask for..." and "tell them you want..." and "have them find Dr. R".  I can say without hesitation that it is the first time in my life that I did every single thing that my little sister told me to do.  I think she likes bossing me.
  • Calling your treatment center to tell them that somewhere between the clinic and the pharmacy you've lost the home infusion supplies that they spent an hour assembling for you, does not inspire your medical team to have a whole lot of confidence in your ability to help your bleeder child.  (In my defense, I had to walk a long way across that hospital campus dragging my 4 year old who had to sit through 3 hours of doctory stuff with an uncharged Game Boy/DS, had not eaten lunch and needed to stop into three bathrooms on the way.)
  • IV = sponge bath
  • Morphine is better than children's Tylenol.
  • Factor is my favorite.  That stuff works really quickly.  Harris went from not being able to bend his arm  to put his shirt back on at the pediatrician's to playing with his dad and sleeping it off in just a few hours.
  • Plans change.  We have decided that we are done poking around in chubby little hands... and arms and feet.  We have ordered a consult with a surgeon and are having a port placed in Harris' chest that will give us 24/7 access until he gets old enough to learn how to self infuse via his veins.  I am a bit nervous about the surgery, but I think that this is the reasonable course of action for our child.  His picc line goes in next week and then the port after school starts and our schedule calms down a bit.
Here is our last couple of days... in pictures:
...after two infusions there are creases in his arm again

... swelling in right arm and shoulder (don't you want to kiss his belly?)

smiles again with dad

sleep. finally. (the swelling has not moved to his lips. he sucks his tongue.cute.)


  1. He's so dang cute, e! I'm glad you have more treatment options than your grandma did, too. I can't even imagine.

  2. He is a cute one. I'm thinking he could sell his tongue sucking technique as a counterpoint to botox!

  3. I do like to boss you! (ps I learned from the best)

  4. I would like to make a nice farty raspberry noise on his belly!

    Ps. Nika is a bossy boss.

    Ps. Great work. I really am in awe at the care your little ones are receiving.

    Ps. Can I say farty on this sight?