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Monday, December 15, 2008

Adapt & Overcome











Well. I seem to have a moment to update. Hannah is receiving her first infusion of Intravenous immunoglobulin (IVIG) right now. She fell asleep at 7 pm. Sick and in pain. For the last three days.... or has it been 4? She has been picked and poked on. They have ordered so many labs that it has taken 4 days of giving blood. The max they can take from her a day is 30 cc. Then they changed her formula to a higher calorie formula. So she spent all day with it coming out both ends. So then they changed it back to the formula we were on before. After watching her do this every year I just want to yell at everyone to get away from her and leave her alone. But I dare not give up now. They are really leaning toward this Common Variable Immune Deficiency. I'm still doing research. But from what they're telling me. These infusions will help boost her immune system. But we still will have to deal with what damage has already been done to her intestines and lungs... and whatever else. These infusions last about 4-5 hours (She has tiny little veins so it has to run slowly) and given to her every 3 -4 weeks. So Thank God Hastings has an infusion center. Food for thought! Hannah's infusions depend on plasma donations. So for all those donors out there...Thank you Thank you, Thank you. Well, I best get to sleep. She will be up at 5:30. God bless!

1 comments:

Jen said...

Hi there!!

i am not sure how I came across your blog, but I recognized immediately Children's!!! Just wanted to wish you well and to say hang in there. My 5 year old son was diagnosed with a stage 3 wilm's tumor two weeks ago, so we are getting to know Children's and Omaha quite well. We are from Lincoln. I haven't fully read all there is to read in your blog, but I intend to and perhaps we'll see you around!

All the best,

Jen