I have risen and am shining.............waiting. I have all my Mom gear on and putting on my war paint (pink eye shadow, dark eyeliner, you know pink says I am nice approachable, dark eye liner says don't even mess with me). I am ready to do a bounty hunt on some swallowing test doctors. I have already been out to the nurses station to ask which door I need to be knocking on to get this swallow study done. Rachel, our nurse, is sweeter than sugar! She kindly warned me that it may be a bit. Everyone will need to coordinate. Yesterday they started the cytoxin at about 5. For an hour he screamed and cryed. Screamed E A T and O w i e. He wanted me near him. He wanted me away. After the second hour of this it became tiring. They ran a different steroid first. The day nurse explained it is somewhere in between a benadryl and a steroid sorta. Then they ran a bladder protector. Then they ran a tummy protector. (What for, he has not eaten! LOL) . Then they ran a cytoxin. Then a diaretic. He is currently getting nourishment through is IV. It looks like a big bag of chicken soup and a bottle of milk. Its really vitamins and fat. He has quit the set up. He has five different pumps and numerous IV hook-ups. We went and begged for benadryl because he wasn't tolerating what his body was receiving. It was making him very uncomfortable. VERY uncomfortable. It only takes minutes when they push benadryl intravenously before he slowed down, saying, "mommie, mommie" and then more in slow motion.....then night night. Poor guy. This morning at three they ran another pulse of steroid. They have been testing his urine all night for blood. This is from the medicine. He has been fine, no blood. I am feeling encouraged today. I have a feeling he is not going to need a feeding tube. That is just my feeling though. Then if they don't give him one (on the other hand) I will be freaked out when he's or drinks. *Shruggs* Can't win.
They gave him more benadryl at three this morning when they ran the steroid so he was still sleepy so I decided to get ready for the day.
Several loved ones have called and inquired about visits. I feel so loved and embraced. It is so beautiful. We have had to politely and kindly as possible decline any visits right now. I fear for several things. I am concerned about immunity levels. Someone comes and says Hi then goes home and gets sick unknowly exposing Gary. With Gary being uncomfortable at times and navagating his emotions and reactions, I fear the stress of focusing my attention on someone who made a drive all the way to Seattle will make me feel like I need to take my focus off Gary and put it else where. Which in theory sounds good, a distraction, but stressful.
After today we will see where we stand.
Continued thank you's going out to everyone.
Thank you Mary, Heather, Pat, Kalee and everyone for your personal encouragement and beautiful words. I do not dwell on them too much because I will begin to chop onions. (you know, get teary eyed). Kalee, I think we should make a t-shirt that says Don't Mess With Mama Tiger. We could put a picture of a mean looking tiger with a cute little cub behind her. Sound good?
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