i've never been a fan of speculation

and i have come to find that so much of medicine is just that. speculation. and waiting. one of the doctor's in e's hemotology practice brought it to our attention that if his levels have been decreasing that there has to be something going on...even if he has consistently tested negative for inhibitors. so i took him for some bloodwork a couple of weeks ago where we drew blood for a mixing study. i say we drew blood because i drew it from his port. it is so weird how i am now capable of doing small medical procedures for my child that i never dreamed i would be responsible for.

anyway, the mixing study results came back positive for some sort of inhibitor activity. or, at least, i think that's what they said. there is so much that i don't understand right away and i tend to get my facts confused.

so, back to the lab tomorrow. for more bloodwork. this time it is not to be drawn from the port. they are going to run tests to see if evan is positive for a lupus anticoagulant or if he has been exposed to the mono virus. both of these things, i have been told, can affect his factor levels in a natural way. i was also explained what they were (the short, peripheral-hemophilia-additives-for-dummies version) and we are hoping that the results show that he is positive for the lupus anticoagulant. the reason for this is that there is a possibility for the body to correct itself on its own and for his levels to go back up into the moderate (or maybe back up into the mild) range. it wouldn't be a definite, but a maybe. and that's always better than a no. if he is found to have been exposed to the mono virus, then it is a definite no-way-in-hell can his levels ever go back up to where they once were.

and you know, i feel so many times like i have a handle on the tension of this disease. and then we go looking at stuff like this and i realise that i don't. even though this isn't a life or death kind of situation, it delivers stress through my body just the same. and often times that stress leads to anger, which i try so hard to fight because its sort of a wasted emotion in terms of this disease. at this stage in the game, anyway. plus, who do i even get mad at? myself? my child? some spirit that may or may not exist? nature? science?

i guess i try to steer my mind in a new direction. a direction that is more positive for everyone. and i think about the lovely people...people that i dont even know...that are working their asses off to figure out how to cure this shit. and i smile at the thought of them. and wish there was something i could do to help. and i can't wait for the day when e's disease is cured. because hopefully i will be alive and able to hug and kiss these people and let them know just how thankful i am.

but for now, i guess i'll just keep going about my life of remembering anti-seizure meds twice a day, making sure the helmet is always on, accessing ports, and packing up a bag full of medicine and needles that would make a day clinic look like an amusement park.


Jaime said...

Good for you for trying to stay positive. That's what keeps me sane when things get tense. I have realized there is only so much control I have and that the rest is up to who / whatever higher powers may be. Keep me posted on the test results...fingers crossed it is something that can be fixed. Just remember, you are strong enough to handle it either way! Here for ya if you need anything!

joanne said...

I have you and your family in my prays
I hope everything is ok =)

SeansMom said...

Sara I agree with you 100%. So much of it is just that, speculation. The reality is they just don't know and everyone is different. That's all they can really do is speculate. When Sean had his head bleed they tried to tell us he "could have" the herpes virus and that is what "could have" caused the bleed between his brain and skull. After the spinal tap they ruled that out... Now they want Sean to go in for an all day clinic next week so they can take his factor levels every two hours after he is infused to monitor how quickly his body is using the factor becasue his does is supposedly higher than the average for a little guy his weight and height. It's just one speculation after the next. Trail and error. It just makes things easier to handle if we all stay positive. Even thought I know it can be hard. You are doing an awesome job! You have accomplished so much already, hang in there! Little E is such a happy, handsome little guy and he's so lucky to have a momma like you! Take care, Marsha