A little update. *its a bit out of order thrid time trying to write this*
Misky had a clinic visit today. Just the normal labs, echo and check up. Her heart Looks and sounds perfectly normal. Mariska Has been throwing up once a day, I've been hoping its just her prograf which will make you sick if its to high. Which it is. 17 Her normal range is 10-14. So playing with that again. She has lost a bit of weight. 11.95kg. Before her ER visit she was 13.3kg. Not so good. We're playing with a few other tummy meds to see which will work better for her and putting asprin on hold.
Her white blood count keeps dropping, which can be caused by two of her meds. which is a little scary seeing now thats all she has to protect her self from germs.
She had a little to much fun in the echo today. One of her medical staffs *forgot his title whoops* did her echo. She was singing the whole time. Ha shes silly. He told her he'd look for some candy to give to her when he was done. Forgot and came back she looks at him and says "trick or treat" must have bribed someone cause came back with a yummy likely to be someones personal stash of chocolate bars. Silly girl.
Shes doing awesome other then the throwing up once between 3-6pm for a few days. Her glucose was a bit low but think all the candy she had today fixed that issue.
Dr. E is a little worried about doing IVIG again with Mariska. Shes A blood type and there has been some issues with the ivig having A antibodies. = liver kidney and other organ failure of things go bad!! She'd turn yellow and be one sick kid. So after her cath on the 5th we will see if its worth doing. If we did do them we have been setting things up with home health care to do them at home. Really hoping she doesnt need the last two. She had a really bad migraine with the last two and maybe even 3 treatments which is on the list of a reaction so we'll see.
Starting to become angry with the people in the lab where she has her blood drawn... Tired of them blowing me off when I ask for IV team. blah. Guess I'll just have to be a mom there and just be forward.
Heres some pre Halloween pictures. We're planning to trick or treat at the hospital tomorrow, but heres the ones from today. =D
In clinic today they added to the system as Mariska "Strawberry Shortcake" Anderson. I love it. I didnt know this until the end. I was wondering Why so many kept poking there heads in to see her costume. =)
Mariska "Srawberry Shortcake" Anderson
Going to have family pictures done. Woohoo!!
