Thank you all for the prayers that you sent up to heaven for us the last time I posted. The end of the week was better and Kari had a good birthday. I hope to post some pictures tomorrow at some point.
Today we went to Clinic and it looked to be a 30 minute process and back home. HOWEVER...things didn't quite go that way. I don't want to go into detail because, honestly, I'm still not clear on it all. In her blood work, they check certain levels of enzymes and fluids from Kari's liver. If you're medically inclined and reading this, please don't laugh if I'm using the incorrect terminology!!! Kari's counts were about 20 times higher than what they needed to be. High levels are normal to some degree but Kari's were unusually high. Home health will be here Wednesday to do more blood work to check all the levels and things. We're praying for it to be lower and more "normal" so that things won't be as scary. Kari is on a special diet at this point and a child on steroids does not need a restricted diet!!! Life in our house may get a little hairy when I have to tell Kari that she has to eat vegetables instead of the Spaghetti O's with Meatballs that she craves. Only 4 days left on the steroids though! Woohoo!
Long story short, we had to wait about 4 hours on blood work results to come back. Then we had to wait on her chemo treatment. Then we had to go to the hospital for a plasma transfusion which turned into a 4 hour process. Then the pain that Kari's been having in her stomach came back full force and the nurses and I tried hard to calm her for 30 minutes to no avail. Finally, she was just begging to go home and my heart just broke for her. I told them to call the doctor and ask if we could just go home and rest. They called her doctor who gave us consent to go home to rest with a warning to come back tomorrow if the pain continues.
I'm going to be very honest in the next few paragraphs just because I need to vent for a few minutes. We parked in the Clinic parking garage when we went this morning which meant we had to walk FOREVER to get back when we left the hospital. It's a maze of hallways and doors and elevators to get there and I was so exhausted that I wasn't sure if I could even get there! On top of that, that side of the hospital is closed at night so it was like a funeral home going through there and I was, quite frankly, spooked. Finally, we got to the elevators to take us up to the floor where we were parked and the stupid thing wouldn't even work. It was either walk up 2 flights of stairs with Kari on one hip and my purse on the other or walk up the ramps in the parking garage. Neither appealed so I tried the phone in the hallway that is SUPPOSED to call someone for help. It did not do that. I decided to head back to the hospital to get someone to help me and found the doors locked because it was after visiting hours. Gee. Stinkin'. Whiz. I finally just yelled "Is anybody up here?" to which no one answered me. I seriously was about to fall apart because Kari was crying with her stomach, I was crying because she was in pain and I felt helpless and there was not a soul in sight to help us.
I finally just packed us all up the stairs, found our vehicle and we both collapsed inside.
Major breakdown on the way home. Major. Let me stress MAJOR. Thank God Kari slept peacefully on the way home because this mama was in bad shape. No one was with us today because we kept being told we were going home so I think it all crashed down on me at once. I was glad to get to see Matthew for a few minutes before he left back out for work. I know he was hating to leave us in the shape we were in but since he's the only one providing right now, he didn't have a choice.
I hate this disease. I hate that Kari is in pain. And we desire your prayers more than ever right now.
21 hours ago