We saw hematology on wed. We discussed Hannah's Von Willebrands (VWD). He said we are not using the DDAVP since they are sure that is what caused the drop in sodium and her seizure.
They are going to be giving her Von Willebrands factor as an IV as soon as she gets to the hospital the day of surgery and for at least a week after. There is also a medicine called amicar that they will also start giving her before. She has had it before.
they called yesterday and said her VWD levels were still the same, I was hoping different. Her Vit K levels are low so they want us to start a special compound of Vit K. Our pharmacy doesn't have it so they had to send it to Hills in Easton. They need one ingredient to fill it so it won't be ready til Monday. I told her I don't have a way to get it on monday especially since I hope to be in Va with my new grandson. She said once it was ready she would call and deliver it herself! I am not used to that :) After 6 doses they want us to repeat the labs.
She had low Vit K levels years ago and was on regular vit K for a long time. the reason we found out before was she was bruising a lot. When we went to hematology for the bruising and vit K, that's when they found she has VWD!
the spinal fusion surgery is one of the most bloodiest I was told. the ortho surgeon told her the greatest risk for Hannah is bleeding out since she is so small (only 38lbs and 40" tall) So I am thankful they are being aggressive with the bleeding issues now. We are only 4 weeks away from surgery now.