Thursday, February 18, 2016

Small changes hoping for a big difference

Caeleb has had a zero inhibitor titer for 15 months, but his half-life is just over 4 hours.  It needs to be at least 6 hours to consider  him "tolerized."  He's doing great and we have to stay the course with big doses of Factor VIII.  As for his Xolair, the drug that changed our lives by allowing his body to tolerate Factor VIII, it's time to decrease his dose.  I'm actually not too nervous about the change, but a seemingly small change can turn into something big.

It's possible that the Xolair has done everything it needs to do for Caeleb's immune system and the only way to find out is to decrease the dose.  It would be fantastic if he did not have to have these injections any longer.  The drug mixes with 1.4 mls. of sterile water which is hardly anything, but the clear, reconstituted liquid is deceiving because it is so thick.  He gets an injection into each thigh and it used to be a horrible experience because it is so painful.  Now he takes a deep breath and plays his Nintendo DS.  He's such a warrior.

Time will tell.  Our first dose of 150 mgs instead of 300 mgs will be in two weeks.  I am praying that the right decisions are being made and that all goes well.

More to come :)

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Wednesday, February 3, 2016

The Honeymoon is Over

It's been 14 months since my warrior has been in the hospital and it has sure been nice…almost like a honeymoon from hemophilia.  Sadly, the honeymoon is over.  Caeleb had a bad fall on the stairs Sunday evening that warranted a bleed dose of Novo Seven.  All was well as he rested and iced his leg. 

2 am comes and he wakes me up because he is itching.  I wish I remember what his skin looked like because I was pretty bleary eyed.  As he gets ready for school I thought all was okay because he wasn't complaining.  I called the HTC just to let them know about his fall and they wanted to see him.  It was a good thing because his hives were getting worse.  He was admitted and has been getting Benadryl and other meds around the clock.

Because he has an allergy history to factor VIII the doctor wanted to see if we could find out why he was breaking out.  At this point we have no definite answer.  It could be that the Novo Seven was a bad lot number.  Today we are drawing labs for a half-life study to see how all is going.

One thing I know how to do is "live in the hospital."  I could get us packed in a moment's notice to get to the hospital and handle the next bleed.  Coming back for this visit has been different.  We haven't had to deal with pain meds and a bleed and that has been great, but coming back into this environment has been really difficult.  I knew it would be a matter of time before we would get back on the hamster wheel, but I just wasn't ready. 

I have been knocked out of complacency and back into the reality and ugliness of hemophilia.   Caeleb's zero inhibitor titer has meant that our family routine has not had hemophilia as the main attraction.  Our lives have been our main attraction and it has been wonderful!  My heart just hurts being here.  All of the painful memories from our past visits have come flooding back.  It seems like a lifetime has passed.  Almost as if hemophilia was gone.

I loved the honeymoon.  It was a beautiful, much needed time away from hemophilia.  It's given me a greater appreciation for the times when all is well.  
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