Day 3...IVIG....

Well, we are exhausted. This is hard. We got up at 5:45 am to start the day and get Haven ready. Kris ran around the house picking up anything we didn't get to the other night. My mom gave us a wonderful gift of house cleaners. She had 4 people come and clean the house top to bottom today to ensure Haven is in a clean environment. It was so nice to come home tonight to a super clean house. Haven just talked about how nice it smelled.

Day 3 is leaving us extremely worn out. My girl....well, my girl is just beautiful. We arrived at the hospital around 8:45 and got started immediately. I almost didn't have time to grab the bags off the chairs and we had to run in to her room. The days are so long so they don't waste any time getting her hooked up to machines.

They hooked up all her lines in to her port and within 15 minutes she was passed out. She just couldn't stay up - she ate her cereal and was out. This medication causes her to turn in to a zombie and she can't even talk to you. She just stares at you with a blank look. She didn't come out of the zombie state most of the day.

By 3:00 pm she was a bright pink color and had another fever. The nurses gave her some tylenol and flushed the port and then wrapped her back up. I can tell this medication is now really built up in her system. The steroids cause her to turn pink and the other medication is giving her a lot of fevers and shakes. Or she just starts sweating like crazy and her lips get numb.

We've mostly been dealing with a lot of diarrhea. Tuesday I was warned that the Prednisone would make her have very aggressive behavior and be constantly hungry! GREAT!!! More of what we've been trying to fix for the past 2 years. Well, 3 days of it and we're seeing it. I get yelled at all the time and am told some things I can't even type on here.

What the nurses haven't learned yet is that locking Kris and I in a small 8x10 room for 8 hours at a time is not the brightest idea! Then throw Haven in there who likes to yell at us....well it's definitely not a quiet room! :) But around 11am today Haven was passed out in her bed and Kris was sleeping on the sink in the room and I was finally relaxing.

Tomorrow is a big day for us. We have been warned a few times about the Cytoxin from the doctors and nurses. We were prescribed another new medication for vomiting. They told us to expect that all weekend so I'm driving with a trash can in the car tomorrow. My house has more medication in it than the local pharmacy! We are keeping track of medications on the calendar. We can't miss any and some of them are Friday, Saturday, Sunday only.

I'm hoping for the best tomorrow....I'm definitely afraid of what's in store for us now and the rest of this year. We just can't believe this is happening. How can so much medication be ok in such a little body?