Sunday, October 6, 2013

Say "Thank You" Tonight

It's fall. The weather is cooling off the bugs are dying, the leaves are turning colors and of course Squeaker is sick. We are starting fall out with a bit of bronchitis. I call it a bit because it was caught fairly early. Squeaker had just been a little wheezy and acting "off" when we had a check up with the pulmonologist. They listened to her and heard some crackling in her lower right lung.  Yeah... great way to start fall. Oh and she has lost a pound too, 24lbs again :(

It is now 10 days into a 14 day antibiotic and 3 days into a 5 day oral steroid. We are still struggling with wheezing, feeling icky, coughing, and sleeping. This is on top of a prophylactic antibiotic, inhaled steroids, Advil, and albuterol. Squeaker is just taking a long time to get over this. This could be a very long winter.

In related news. More immunology test results came back. Well it's not good news. Squeaker does not make enough antibodies to support her system. For example they gave Squeaker a pneumonia vaccine to see how she would react. Before the vaccine Squeaker was considered "safe" from 3 of 17 strands of pneumonia and after the vaccine she was safe from 4 of 17 strands. Normally after 2 vaccines you are fully protected from all 17 strands.

These results combined with the last set make it clear that more aggressive therapy is needed. Once again they are going to try and get Squeaker approved for infusion therapy. The hope is that after a few months not only will Squeaker not be sick but the therapy will teach Squeaker's immune system how to work. Her system is there is just doesn't work right. We just have to get her approved by insurance.

As frustrating as it is to get Squeaker approve for infusion therapy I get why insurance doesn't want to pay. That stuff is expensive! Per gram IVIg is twice the cost of gold, and the bigger Squeaker gets the more grams she needs.

Why is it so expensive? Well immu-globulin, what makes IVIg, is a very small part of our blood. It takes 8 pints of blood to make 12 grams of IVIg. At her current weight Squeaker needs 23 grams of IVIg every month at a cost of $2070. To make those 23 grams it takes 16 pints of blood, or 8 pints of plasma every month.

Want to figure out what you would need?
Take your weight in pounds     150 lbs
Turn it into Kilos (times .45)    67.5 kilo
Times 2 for the grams needed  135 gram
Divide by 12                             11.25
Times 8 for blood donors          90 blood pints
Times 4 for plasma donors       45 plasma pints
Price per gram                           $46
Total price for medicine            $12,420

Crazy huh? One more thing to add to the crazy. A healthy adult can only donate 6 pints of blood a year. Now a healthy adult can give up to 100 pints of plasma a year.

The point of saying all this is to let the world know. I'm not trying to throw a pity party or say woe is me. Each and everyday I am thankful for my Squeaker and what health she does have. We still get to do a lot of things, and have a lot of fun. But tonight I encourage everyone to make sure you say "Thank You" for your children and what health they have. For the joy and fun they bring into your life. Be thankful for it all.

Then tomorrow wake up and find a place where you can donate blood or plasma. Get some friends together and go donate. There are many people in the world who use it. Hopefully soon our little Squeaker will be one of them.  For the seven month trial they want Squeaker to do she will use up to 105 pints of blood and/or up to 53 pints of plasma. So get donating!


  1. can we donate blood and plasma directly to her?

  2. Sadly no. Only whole blood can be sent to a specific person and that is at the discretion of the center taking the blood. Also the more people anti-bodies come from the better the treatment should work.
    Our hope by asking people to donate is that there will be more to go around. Making it easier and cheaper in general. Also if there is extra plasma in the system they can do more research and maybe they can find a better treatment.