Access... 2.0

I have conquered the Huber needle and infused my son for the first time today.  It was better than last time.  I put the numbing cream on at our house before we headed to the center.  (I didn't have any of those big, clear bandage things that they use to hold the cream in place, so I used Saran Wrap and tape.  Not pretty, but effective nonetheless.)  It seems to have worked well.  Harris cried the whole time that we had him pinned to the table, but he didn't cry any worse when I stuck him, so I call that victory.

I am, as always, so grateful for our amazing HTC team.  Our staff is the best, best, best ever.  Their support is the reason that this journey to independence is moving forward in a (mostly) smooth way.

Yay.

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.)

Tap Tap

Here it is...the long awaited infusion video. This is a typical infusion experience in our house. You can hear Mia in the background fussing a little because her foot was hurting her; but she knows that when I am doing an infusion on Jack she just has to stand back and wait her turn...we did get her foot fixed! Grady was on camera duty. Something he took very seriously. He wanted silence through the entire production. You can even hear him tell Jack to be quiet because he is being recorded...that made me laugh. You will hear us refer to an infusion as Tap Tap. When Jack was little and getting infused in the hospital once a week, the nurses use to tap his veins to make sure they were good candidates for a needle stick...hence...tap tap....Everyone is involved when we do this. Mia, my 4 year old even gathered all of Jacks supplies for his infusion the other day.
I didn't show the set up, because everyone will have their own way of doing this. The other step you don't see me doing is wiping the syringes with alcohol swabs. This was done outside of the camera angle..:) Everything else you see is typical of a tap tap day.

Jack, a.k.a The Participant, Grady,a.k.a The Producer,
Awny a.k.a The Infuser, and Mia a.k.a, Sound Effects

MRI

Today my son Jack had a routine MRI done. The last time he had this done was in 2008. Jack has to alternate between chest x-rays and MRI's every year. This is done to check the placement of the port and all the "stuff" that goes along with having a port. Its not a bad thing, but it can be scary for a little kid. We have had great success with Jacks port. he had it put in when he was two, and it has been wonderful. We have had no infection or worries.

Like I said before, these procedures can be nerve racking for a kid. One thing I have learned as a mother with a hemophiliac child is to always be upfront and honest with them about everything. Yes, you will get a shot and it will hurt....but only for a second. The machine will be loud and you will have to hold very still. I have always told all of my children, not just Jack, exactly what will happen when we go to the doc. There will be lots of pokes, pricks, needles, and tears; but it is better to go in as a team with your childs trust, than to battle it out at every procedure. This is the Bloody Good Life of a hemophiliac. (just as a side note, Jack has done his MRI without sedation each time, and has done beautifully.) attached to this is a video of Jack explaining in his own words, just what it was like today.

Awny and Jack