Ummm yeah.....tons-o-fun, right?
Anyway, because both bleeds happened to occur on a "no factor day", her doctor switched her back to having factor every day. Her first GI bleed was also on a "no factor day" so I'm pretty dang sure the "no factor" part has something to do with it. Gotta love them spontaneous bleeds, right?! I feel relieved now that I know she's covered, but I'm sure the pharmacy is absolutely thrilled. This girl will probably use close to $1M worth of factor by the time she's a year old.
But shoot, she spit up a friggin clot during her last GI bleed. As far as I'm concerned she's worth waaay more than a measly $1M!
JD and I were both at work when it happened. I work less than 10 minutes away from where Niki is, but John couldn't get touch with me right away. My cellphone was in my desk drawer so he raced home from SF to give her Novo. My mother-in-law (MIL) watches her, but she's just not comfortable with administering her factor. Yet...
I felt better knowing that she was laughing and playing while all of this was happening, but still... bleeds are no fun. When I finally saw her and the aftermath of the bleed, I felt like the worst mother in the universe. I should have had my cellphone in my pocket!!!I did NOT like what I saw on her clothing so I took some pictures to show her doctor.
Maybe I'm just biased, but I thought it was pretty bad, no?
DO NOT SCROLL DOWN IF YOU DON'T LIKE THE SIGHT OF BLOOD!!!!!***
Gory, isn't it? Told ya not to scroll down. She's tiny so keep in mind how much blood this is coming from a 4.5 month old! (In case you're wondering, the key is there so her hematologist can have a rough idea of how much blood Niki's bleed produced.)
So anyway, Niki's monthly check up was bumped up to tomorrow. The nurse case manager told me that they *might* to refer her to the GI Department. The Zantac her hematologist prescribed after her 2nd bleed unfortunately didn't work to prevent 7/2's episode. (See above pics in case you forgot!) So, my little Niki *might* have to have an endoscopy to figure out what is going on. The fact that the blood was a combination of clotty and runny and not "just runny" could be indicative of a deeper mucosal bleeding. The runny bleed on 6/30 made the milk in her bottle turn pink!
I guess we'll see what tomorrow brings. I am happy to report that she's been bleed free since she's had her factor dose on a daily basis.
Also on another, more happier note, Niki has passed two milestones!! She's now eating solids consistently and turned over for the first time on Friday! Here's some pics....enjoy!Niki <3's Rice Cereal!
Taken after she turned from her back to her stomach.