One of our new friends here took Tyson, Brooke, and Bennet to the Pacific Science Center yesterday for about 5 hours (nice liberation for us) and they all had a good time. The Science Center is a great place for kids to hang out and explore and play with many scientific stuff. A group came and feed us at the Ronald McDonald house and had a Hawaiian theme so Brooke had a lot of fun getting dressed up and learning to hula dance.
Jeannine spent the night last night and it was another tough night. The nurses kept on coming in to do the vitals, temperatures, and all that they have to do. It gets really annoying after a while, even though they're just trying to take care of Jovee, because you really don't get to rest because they have to take temperatures, heart rates, blood pressure, etc...really, it gets annoying.
So they had to poke her at 2:00 am to get a blood culture so Jeannine and Jovee had to be moved to a different room just to do that. I don't know why, usually they just do it in the room. And another poke and blood draw at 4:00 because her hematocrits were down to 17.2 (that's really low for blood). She lost a lot of blood yesterday from the nose bleeds. So another blood transfusion to boost up her hematocrits this morning.
The mucositis is getting really bad. She's got sores on the side and on the roof of her mouth. White and puffiness inside of her is what the mucositis looks like.
She's losing her hair again. She's shedding ots of hair on her pillow.
So they just did a CT Scan at 12:00 noon, waiting for results of that. An X-Ray was done that showed there was some minor changes in her lungs from the bacteria earlier this week.
So right now she's on all these meds:
Acyclovir - an antibiotic because of her zero ANC
Bacitracin - for the G-Tube to note get infected because she's at zero
Caspofungin - for antifungal
Ceftazidime - antibiotic
Diphenhydramine - for nausea
Filgrastim - to boost white blood cells
Lorazepam - for nausea
Nystatin - topical cream for her diaper area to control the sores
Ondanestron - for nausea
Ursodiol - for the Liver
Vancomycin - Antibiotic
Morphine - Lots of it to control mucositis and any other pains
TPN - Total Parental Nutrition, not a med, since we stopped feeding her by G-Tube, it's an IV drip, for her to get her nutrition, basically this is what she's eating. It's got lots of stuff in it like calcium, potassium, magnesium, etc...
So how is Jovee today, considering everything? I don't think she's doing very good. Feeling really, really crappy. I would be feeling like crap also if I had to be going through what her body is going through.