Mariska and I both had a crummy night for sleep last night. Shes trying to get used to not being waken up every 2 hours and getting the feel for home again. On top of her tummy pain shes still having. And the tons of dirty diapers we have been changing. Thought we'd wait until all this passes to really potty train her, but shes so ready. To day we had Clinics *will go into that more in a bit* She was doing the potty dance waiting for her blood draw. Took her to her first potty trip out side of home. Think she liked it, didnt want me to go with her until she needed help getting on. haha. At home she wanted to go potty and pooped twice on the pottty. Guess it wasnt to bad with her diarrhea. Poor thing. Is still having it a few times a day. Top that off with the strongest antibiotic I've ever seen doesnt help anything.
Sam and I really feel her tummy pain is all thanks to Vancomycin 2.6mLs three times a day for a week, 2 times a day for a week and then 1once a day for a week. Its a HUGE fight getting this bad boy down and keeping it there, doesnt matter what we flavor it with. Think the stress is hitting me again, Its hard starting over with a new drug.
This morning we had a clinic visit. ECHO, labs and check-up. Her echo looks normal =) yay! so her moppiness isnt because of that! Her blood labs I'm a bit upset about.. She has been poked so many times that no one is to poke her with out the words IV Team under their name!. So the lady today "thinks she has one"... had to keep my cool. Wish they would listen to me, and just stick with the finger poke Dr. E said was fine to do. Blah, makes me so frustrated not being listened to.
Dr. E and the team are worried about all the throwing up and redoing meds *about every med!* So they hacked her meds list to only the Must have meds. to see if that helps her tummy. Shes not disgusting food well or wanting to eat a whole lot. But shes getting enough to drink.
Sam and I have felt so out of the loop with the GI team. We have seem them.. who ever "them" are... 3 times since transplant or rather they have seem Misky. The last one I needed a break and took my first afternoon out side the hospital with out her, and missed them. To us it feels they are pumping her full of unneeded meds and because of that its causing other issues.. like belly pain, and C-diff!
Thought I should just vent and get it all out. there you have it. We are so blessed to have all the trained doctors to watch over Mariska, do whats best for her and what has saved her life. Things will smooth out and emotions will also. Just have to keep faith.
Two days ago Was Mariska's 2nd month angel heart anniversary. I think of the donor family often and they are never far from our hearts, we are so grateful for their sacrifice.
Biopsy 7.. I lost count. - We made it home after a very busy three days in Palo Alto. Owen's biopsy went perfectly and he received another zero rejection score.. yay! His pressure...
1 day ago