Sunday, May 3, 2015

ICU Day 2

Dad and I got back to the hospital by 7:00am so we could be here for the update that the nurses give when they do a shift change. Mom was wearing a different oxygen mask. Instead of the basic kind that just goes in the nostrils she was wearing both the nostril kind and the kind that covers the whole mouth. They explained that she was not getting enough oxygen so they tried another mask. She is supposed to stay above 90 but she was bouncing around in the 80's. She wore the face mask for a few hours but they had to crank the oxygen machine up to 100% oxygen which is bad for the lungs so they decided to try one more mask that has a high flow. The respiratory therapist had said that if she still does not respond well to the new mask or if she gets worse then they will need to put her on a ventilator.

 They had her on a liquid only diet because they were afraid of her aspirating. She could have things like jello, pudding, broth, juice and ice chips. Just as the nutritionist brought her lunch tray in the nurse took it away. They had decided she couldn't have anything! Not even liquids or a sip of water until they get her oxygen level up. Mom was not happy about that! She was whining and whimpering that they took her food away. The high flow mask really started bothering her. There was so much air coming out so fast it was hurting her nose and drying it out. She also said it was loud and it sounds like she is stuck in the back of a jet plane. She claimed the air was coming out her ears because she has tubes in her ears. She kept sliding the mask down her face because it was bothering her so much. The nurse came in and saw what she was doing and she was NOT happy about it. The nurse told her she needed to put her big girl panties on and suck it up! She assured her that if she wanted to get better than she needed to obey the rules. If she keeps it on long enough to get her oxygen level where it needs to be then they can lower the pressure. Needless to say, mom put it back on.

She had joint pain but the first couple of doses of prednisone helped relieve her pain. In return the high doses have increased her blood sugar so they have started giving her insulin. She started taking an immunosuppressent called cyclophosphamide which is a pretty serious drug used in cancer chemotherapy for auto immune problems. Hopefully she won't have to take it for long. Once she is in remission they can put her on a milder immunosuppressant as a maintenance's drug.

She is still very weak. She has no energy to do anything. Her feet are numb, she can't walk let alone stand. She has to use a bed pan. She is coughing up blood and she has blood in her urine and in her stool. The doctor said it might be attacking her kidney's now too so they took a urine sample. He told us that this disease gets worse before it gets better. He also told us the possibility of her being on a ventilator and the possibility of dialysis to clean the ANCA out of her blood if she gets worse.

It was another long exhausting day. Dad, Courtney and I spent the entire day with her and took turns taking breaks so that there was always someone by her side. We left the hospital around 10:30pm and went straight home and straight to bed. I was hoping that I would sleep better than the night before. I didn't sleep well previously because my mom had my pillow. It's hard for me to sleep without my pillow so I take it everywhere I go. I brought her pillow to the hospital with me this morning but she didn't want it. She said, "your not going to take your pillow away from me are you". I told her she could keep my pillow. If that is the only thing that makes her some what comfortable then she can keep it!

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