Can You Kill a SuperMom?

I think my nemesis, Crazy Medical Surprise Man, is sure trying! The latest installment in the saga that is my life is as follows.

Drew not only has VWD, but a platelet dysfunction. It is a mild one, thankfully! It only causes him problems because he has to have major surgery. However, the correction for it may kill me! Drew has to have a platelet TRANSFUSION ( yes, that is a type of blood transfusion) before every surgery! There was some good news, the medication for correcting his VWD IS EFFECTIVE for Drew! Yea! So, he will receive that before surgery too.

Drew's orthodontic expander fell out and we had to drive an hour both ways for them to tell us that they have to make a new one and he definitely has to have one put back in because with his plastic surgeon we are probably looking at January or February as the earliest opening in the surgery schedule. He can't go 2 or 3 months without an expander. So we will have to go back to the orthodontist on Nov. 26th, which is the very first available appointment they had. What a joke! They started this whole bone graft thing in June 2006! And now it looks like it will actually happen in January 2008. Does that seem wrong to anyone else?

Oh, and just in case that wasn't bad enough, they are pulling 6 of Drew's bottom teeth when he has the bone graft to optimize what little space he does have for his adult teeth to grow into. Poor, poor child. At least he only has the option to "eat" liquid for 2 months after the surgery.

I feel like I have a big chunk of Cryptonite tied around my neck. I am pushing and fighting and struggling for every little millimeter of success I get these days. It just doesn't seem right.

Von Willebrandes Disease- The Disease That Isn't a Disease!

I looks like Drew has Von Willebrande's Disease. Funny... it's not really a disease. It's more just a condition, a way of being. So, where do we go from here? We have another appointment with the hematologist on Monday. We are doing a drug trial. The drug is called DDAVP. It corrects the problem in a lot of people with Von Wille's. We have to draw blood, give the DDVAP and then draw the blood again to see if it improves his condition. If it is effective, we can use it before surgery to prevent bleeding problems. I am hoping we walk away from the hematologist on Monday with some answers. I just want to get the go ahead for surgery! We really need to get this done! At least now we have had the chance to investigate Drew's tendancy toward bleeding and hopefully fix it for this and future surgeries! I will be adding some links to info. on Von Willebrande's Disease to my long list of helpful links for those of you who want to know more!