April 18, 2012

Update on Mom for April 18th, 2012:

Today Mom had an average day. She did not lose any progress, but did not gain a ton. Her numbers were excellent today though. Her breathing can be 100 max, which is best. 3 days ago it was in the 80's (not great), yesterday it was 92-95, and today it was 96 all the way to 100!! It averaged about 98. Her alertness level was still high, but she had her eyes closed a lot to try and catch up on some lost sleep. She is still in ICU and she did not get off the ventilator. Her biopsy results still have not come in. We are hoping that she can get off the ventilator in a day or two. They turned it off to see how long she could go today on her own, and she went for FIVE HOURS! That is great progress, and they are increasing it more and more every day. This is awesome news! Her rheumatologist did come in at 6:30 am today. She had a plasma transfer of the blood to try and eliminate some excess protein in her blood. Tomorrow, she will have dialysis again (filtering blood process) and she will have another plasma transfer. Her medicine Cytoxan does make her very nauseous, so they give her a good bit of medication for nausea to make her feel more normal. They do also still have her on some steroids. Also, they suction her lungs out to remove blood and other material when she starts coughing really bad, and that is usually about every 45 minutes. I told her it is like a symphony in her room of sounds, all of her machines are always beeping and making noise. Her lungs are still inflamed, which makes them irritated which causes coughing like she does. Her body is still very swollen in many areas. I told her I cannot find her knuckles on her hands anymore since they are so large now. The swelling will eventually go down. She also has her fingers pricked a lot, which probably gets annoying.
She tends so say A LOT with her eyes, meaning when she gives you "the look" you know exactly what she means even though she cannot talk. She still says she is in charge of us and we are not in charge of her (this is all written since she cannot talk). She still really likes to write us messages on her whiteboard. She wrote on today that said, "I pray and sing songs from LUG." I thought about it and looked at her, and I smiled. She tried to squeeze out a smile past the ventilator tubes. She wrote down "Susan and Dawn 10:30" which meant her friends had come to visit with her. She also is in love with our dog, Bandit, and wrote down, "Hug Wandy" (nickname) and I told her we would. We like to joke around about sneaking him into ICU in a suitcase and letting him out in the room, and that makes her smile. She really likes you to hold her hand when you are with her, as a sign of comfort letting her know you are still there. I gave her another foot rub and she just layed there, and didn't say much. Even when she isn't feeling well, she tries to make herself look happy in front of other people.
I looked at her and said to get her attention, "Mom, your nurse today is HOTT!" She must have been paying attention and she looked at we with HUGE eyes and pointed her finger at me. Then Daniel said, "Yeah, Cara was pretty hott also!", and we used it as humor with her more than being serious. Her nurses are very nice to her and us, and they take great care of her. We probably couldn't ask for better care for her. She always asks me if I have homework. She is so bossy even though she is sick. She tells us to go home and eat also. I just tell her I'm not hungry, because I love every minute I get to spend by her squeezing her hand and holding her hand. I told her I needed a haircut about 2 weeks ago and Daniel was going to cut it, and again she zoned in quickly. I told her it would save money (jokingly) and she said to go get it cut. She also had her nails painted sparkly pink when we walked in, courtesy of Shannon. She basically gets the treatment from all of us, but we don't mind. She deserves it!
So for today, she was more laid back. She did a lot of listening and looking. Her numbers were at great levels, and being off the ventilator for 5 hours on her own makes me so proud of her being strong! She is trying so hard so she can get out of ICU, and she is doing a great job. I think she feels sad when we leave, but I told her I would be back as soon as I could tomorrow. She had a tear, but forced a smile. I had a tear also, but tried not to show it. I don't want her to feel afraid since she is doing so well. I love her more than anyone will ever know, and I cannot wait for tomorrow with even more improvement and great results when we get her biopsy results back.
Thanks for checking on us. We love you guys, and we appreciate your prayers. Until I hear more tomorrow,
Joseph