So far Livi has had 5 lumbar punctures, 6 bone marrow biopsy, a port insertion, mastioditis, 3 platelet transfusions, 2 blood transfusions, received chemo 4 times and still managed to be a some what happy little girl. Although the steriods she's taking twice a day dont make her the most pleasant to be around....and make her eat constantly she is still managing to be my sweet little livi....sometimes. I've been yelled at for laughing at our favorite show Friends, not putting enough ice in her ramen, sitting next to her, looking at her, talking to her....I mean the list goes on and on. But who wouldnt be a little grouchy? The steriods make her extremely hungry and since we have been home her diet pretty much consists of :
-Spaghetti
-Ramen Noodles
-Spaghettios
-Pizza with the red circles (pepperoni)
-Breadsticks with the not hot red sauce
-Peanut butter with pink jelly
-Black bagged chips (BBQ)
So lucky for us most of these things are microwaveable because if some of you didnt know we STILL dont have a stove...YEP! We have been without one since the day we got home....thanks Jessica (hahaha) But luckily we have neighbors (Dars and Rex) who are pretty awesome about letting us using theirs. Supposedly I'm supposed to get one on Monday...but cross your fingers.
So at the hospital on Thursday we didnt have any procedures, just her chemo. Since we had to come home with Livi still on antibiotics we had to leave her port accessed, this means she had to have to have a needle inserted in to her port which lies right under skin on her chest for a line to come out of for me to hook her up to her medicine untill her ANC (the part of the white blood cell that fights off infection) is at least a 500 and so far everytime its been checked it has been 00. So when we went in they had to de-access (take the needle out) and re-access it again to change the needle, she cant have the same needle in for longer than 7 days. This is the first time she has ever been awake for this. It was horrifying, think about how you would act if someone was sticking a huge needle in your chest...ya not fun, so they took off the dressing and took out the needle. It was so weird seeing her chest for the first time in 3 weeks with out something hanging out of it....then they put some cream on it called Emla cream which will numb the sight pretty well for re-accessing. So as we sat there for 45 minutes waiting for the cream to work and for the results from the blood cultures Livi enjoyed 3 bags of BBQ chips and some chocolate milk. Finally when the nurse came back in with the new needle I started panicking...how will my little girl handle this? How will I handle this? I almost wanted to leave the room, but I needed to be there for her. So the nurse did a pretty good job of hiding it right until she put it in, but Livi was still scared. I was reading her a book to try and keep her occupied, she wasnt having it. Well she got the needle in and hurry and put the dressing on and came in to give her her Chemo. They come in with 2 people and both are wearing purple toxic gloves and big blue aprons that cover their whole body. Just in a little seringe they put it in through her port. So a couple minutes after that the Doctor comes in to read me the results of her blood work. I felt like they needed a drum roll, I did not want to take this little girl home hooked up to anything this week! She told me that white blood cell count, her red blood cell count, then her hermaticrit, then last her ANC...........1300!!!!! HOLY COW! THATS AMAZING!!! From 00-1300 in one week! She is doing so awesome and is being such a trooper through all of this. So we got to come home de-accessed! No more antibiotics at home! No more sponge baths! No more bandage changes! HORAY! And she was so excited to tell and show all of her closest friends and family that she had no port!!
