April 16, 2012

Update on Mom for 4/16/2012:
Mom is still in the ICU unit today. She has ventilator tubes down her throat and a feeding tube up her nose. I told myself when I got to the hospital to stay calm, and I did (barely). Most people do not know how others feel to see their MOTHER in ICU, having the machines help her breathe and do other functions. I broke my heart. Literally. Nobody deserves this, especially not someone like her. She is not very alert, but has her moments where she realizes we are there.
I don't know where to start.
Well, I got there at 4:00 hoping to see her wide awake and happy. I got there and she was very tired and kind of 'out of it'. I said "Hey Mom! I love you!" and she squeezed my hand (she understands). That made me happy. She can't move easily or talk at all. They come in hourly to suction out her lungs to remove blood and waste material that has made its way in.
They did her kidney biopsy today. We will not know about that until the end of this week or beginning of next week. She is still on a lot of medications for pain and for other things. Her rheumatologist made it in to see her today. He said there is a medication called cytoxan that when given in large amounts acts as a form of chemotherapy, but when used in smaller doses is used to treat inflammatory diseases such as rheumatoid arthritis, hepatitis (a liver condition), and other medical problems. She is having liver problems. He did give us very good news. She is going to be okay and have a smooth recovery since we caught this early. She is still going to be in the hospital for a while.
They will start dialysis through a port in her chest they put in today and eventually they are hoping they will do home based dialysis through her stomach. As far as the lung infection, they're going to try to stop that with chemo but thats not until she's out of ICU either. Right now, she remains sedated and they are just keeping her comfortable.
She was given a notepad to write us notes since she cannot talk. Some of the notes were actually very funny, and others made no sense. She wrote one that said, "Do they recycle Christmas trees here?" and this told us she was being loopy. That made me laugh. She wrote "I love you" several times as well. She misses Bandit (our dog) so much. I send her pictures of him all the time and she smiles. She moved her hand (signal for her wanting notebook) and she wrote "BANDIT." We said, yes, we are taking care of your baby. I felt bad when she started moving rapidly, and asked what was wrong. She twitched her hand asking for the pad. She wrote out, "Where am I???" and we tried to explain she was in the hospital, and the nurses were taking good care of her. The pad was a great idea for her to communicate things like "I have an itch" to "I love you".
We did notice large amounts of bruising on her everywhere. That will all heal as time passes. A lot more info will come to us when her kidney biopsy results are returned. Her rheumatologist said she most likely had Wegener's granulomatosis (WG), more recently granulomatosis with polyangiitis (Wegener's Disease). It is treatable with cytoxan and other medications.
When time came to leave, she looked so sad. I always remember people saying, "Big kids don't cry." Well, that isn't always true. I couldn't help my self but give her a kiss and huge hug trying to say bye, and just cry. I cried there at the bed, in the hallway, and in the car. Then I remember her writing out, "Are you afraid?" I remembered this, and even though I am so upset and sad, she is just SO strong. Yeah, I am afraid for her, but God's hand is on her, and all the doctors have given us the thumbs up so far.
Joseph