I found out on Friday that Eve grew Steno (Stenotrophomonas Maltophilia) in her last culture. This REALLY upset me as she has never cultured anything but Staph before! I did alot of research on Steno over the weekend and everything I have read was bad!
Apparantly its the new superbug, worse than C Diff and MRSA. It's also supposed to be extremely hard to rid and if you are lucky and get rid of it, theres a high chance it will come back again. Its also supposed to cause rapid deterioration in CFers, like Eve needs anymore deterioration!
Luckily the Steno that Eve grew was slight and is sensitive to Bactrim, which she is taking now, so hopefully she will get rid of it! I really dont know why her doctors are not concerned about this new bacteria; their words exactly were "its nothing to worry about!" ????? Seriously, you dont think im gonna worry after reading all this?!
I worry about Eve CONSTANTLY!!!
I'm worried when I drop her off at school that she'll be ok, that people wont cough around her, that she will make friends, that the kids will be nice to her even though she's "different".
I'm worried that she will constantly be sick like she has been the last 2 years.
I'm worried that she wont catch a break.
I'm worried that every day we spend in this country is making her sicker and sicker.
I'm worried that the remaining bit of her right lung will become damaged and need to be removed.
I'm worried that she will never get a chance at being a "normal child".
I'm worried that she will never get a chance at being a "normal adult".
I'm worried that one day I wont have her.
This little girl is my life, I NEED her to get better...
It's okay to feel worry and fear. I won't say don't worry because that would be silly and stupid.
ReplyDeleteI will say that every individual story is different. When we look up things on the internet, 99.9% of the info we find is negative and frightening. It doesn't matter what you look up, that is the way that it is. I'm sure the doctors want to give the Bactrim a shot before they start to become outwardly concerned. It's their job to stay cool and calm even though it's not always the best reaction to a situation. As a parent, you want them to show concern and urgency because these are the emotions you are feeling and rightly so! Validation is an important piece that a lot of doctors miss.
I'll bet dollars to donuts that little Eve will take her Bactrim and in a few days she'll start to feel a little better. It will work! I believe it my heart!
You are a great mom and are doing a wonderful job taking care of your daughter. Never ever forget that!
Tell Eve that Josh and Moganko send big hugs and lots of love. :-)
Peaceful Things.
Thank you Josh, that means alot! I know I need to try and stay calm about these things but it is so hard! Ever since Eve's lobectomy I freak out at the tiniest thing that goes wrong! I keep thinking, she only has one proper lung so she cant afford to get sick...EVER! But of course this isnt the perfect world and she has CF so she will get sick sometimes. I just have to try and deal with that!
ReplyDeleteTell Moganko Eve is a huge fan! Sending lots of love right back your way :)
Claire... as i already told on fb don´t worry.... i've already been through this bug and killed it.... If you want to see how "not worried i was about it, go check on my blog my jan/feb posts when I found out i was growing it... np...
ReplyDeleteHope littleeve gets better soon XD
Cate
Hoping you can get rid of this new bacteria. Sorry she had to add something new to the picture. You are right she has had enough! More than enough!
ReplyDeleteI worry every day about Ashlee too. Especially dropping her off at school, hoping nothing happens there. Hang in there...Eve is a VERY special little girl and I am sure she has MANY friends that like her for who she is!