Dad's Info Over the Weekend per Lori the RN Sister

This is from Friday 1/9/09 - the photos in my post below was from Saturday, 1/10/09.

Daddy had lots of encouraging signs he was giving us today. Much more so than yesterday. He urinated again this morning, although it was only 180ccs and still very dark. He started doing a little bit more for himself like moving his bed position by pushing the buttons more and he actually held his own cup and drank from a straw some of the time. He was also better able to communicate. Once or twice he was clearly audible. He is still coughing up a lot of crud, but at least it is coming out of him. He still complains of pain though Mama and I both thought that he seemed much more comfortable and we think it's because of the Fentanyl patch they placed on him. He got morphine in the late afternoon after he told the nurse's aide that he was hurting. The nurse promised us that she would give it again just before she left for the day and that she would pass on the word to the night shift to give it to him on an every four hour basis.

Daddy is mostly coherent but does say some things that are a bit strange. For instance, he said to me "I'm not on chemo, right?" I said "Right." Then he said "But I am still getting therapy, where is it?" I pushed the IV pole into his line of sight and pointed to it and said "They are giving you fluids right here." I think that is what he was referring to. He also asked the GI doctor when they would be taking "the wire" out of him. Mama, the doctor, and I all looked at each other a bit puzzled. Either Mama or I told him that there was no wire in him. Mother later told me that she thinks that he meant the PICC line in his arm. Daddy was able to drink more water and suck on more ice today. He took a few small sips of Ensure and Mama got him to eat 2 or 3 bites of jello off his lunch tray. But that is all he took.

His labs are a mixed bag. The liver tests all came back worse than before, and his belly seems to be growing bigger by the day. His skin is mainly pink, but has a yellowish tinge that I fear will get worse with the liver worsening. His eyes are yellow. His electrolytes like potassium, sodium, etc are normal for the most part. His album level is very low which is not surprising because it is a nutrition marker. His BUN (blood urea nitrogen) level is extremely high at 72. His creatinine is high at 1.9. These are both kidney function indicators. These are probably so high mainly because of his severe dehydration. I hope that they turn around and that he doesn't go completely into renal failure requiring dialysis. His blood pressure is still very low for Daddy, who normally has high blood pressure, but his systolic, upper number, stayed above 100 all day. So that is much better than yesterday when it plummeted to 80. When his thrush gets better and his throat doesn't hurt so much and his pneumonia gets better, hopefully, he'll be going home with Mama.

My biggest worry about that right now is his extreme weakness. He is like a baby with that. He can't move himself in bed. He needs help with everything and then gets upset when we don't understand what he wants or exactly how he wants us to help him. Mostly he has been extremely patient with all of us and very, very stoic though. The nurse's aide was a doll today. She tried so hard to help Daddy and asked Mama and me how he likes things done and our advice on how best to deal with him. She gave him a good bath and I helped her. He didn't care much for the washing up procedure because every touch seemed to hurt him, and Lupe the aide was very gentle with him, and also because I think he might have been slightly embarrassed about having to be cared for to such an extreme. No modesty allowed in a hospital you know.

One funny thing he said was that when we changed his socks, I asked Mama to pull out a pair of dress socks and a pair of sturdier athletic socks so he could choose which he wanted. He said "Shit, I don't care." Lupe, Mama and I all had to laugh at that statement which was very clearly understood by all of us. I am hoping that he gets some physical therapy help at the hospital to get out of bed and sit in a chair, go to the bathroom, walk around some, etc, before they discharge him. He'll have to regain more function to be able to go home with Mama. But, it seems that the infections and resulting pain must be dealt with first. Also, his growing abdomen is a huge concern of course.

This is taking a big toll on all of us, but I know that none of us would have it any other way. Daddy changed our diapers and comforted us when we were too little and helpless to do it ourselves, now it's his turn for some payback. I know that we all love being with Mama and Daddy, even when it's hard, sad and very frustrating not to be able to help him more.

This news is from Sunday, 1/11/09...

Grandma Root convened all of us that are here, including Shari, who has now joined us, and let us know after a little discussion that she is putting the living will back in the chart. Dr. Patel, whom we all love, explained how things would probably turn out for Daddy very thoroughly and lovingly and that made Mama's mind up as to how Daddy will want things to go when it comes that time. Mama's a brave warrior!

As far as the long-term plan goes, it's still up in the air. Daddy's condition is taking us all on a frantic roller-coaster ride. Earlier in the day things were looking very grave, but then this afternoon he rallied. For instance, he's off the drug that was dripping into his veins to keep his heart rate down and his heart rate and blood pressure are stabilized and back to his "norm." He isn't even requiring the IV fluids now as he is taking in enough fluids and more "full liquid" foods by mouth to keep him in good standing. Also, his liver function tests have improved again today and his urine output is way up.

When I asked him about whether he is hurting he said "Yeah." I said "Where?" He said, "In my back and butt." He didn't mention his throat, chest or belly, which had all been very painful due to the infections and liver inflammation he's lately endured. Mama told Dr. Patel that his belly is much softer now and he concurred. The "back and butt" pain is probably due to the fact that for six days he's been laying in a hospital bed in basically the same position. Mama is going to ask about why he isn't being turned and moved around more.

He's weak as a kitten and still has to work hard to talk in a barely audible voice, but all the signs are now looking up for the immediate future. Hopefully, they'll get him back to a regular room on the floor tomorrow, since he no longer seems to require ICU care. Physical strength is a big issue however. Dr. Patel said that they will start his occupational and physical therapy back when his heart stabilizes and that happened today, so hopefully they'll start working with the strength issues again tomorrow. Dr. Patel also mentioned hospice, which will be needed probably at some point. I think hospice is a great idea when the time comes that he needs it. The nurses and techs who work in hospice care have a whole different outlook from the "floor" and ICU nurses who are working to correct immediate health problems and don't seem to have time for the more "mundane" things that the rest of us would call basic human existence. Comfort is their main focus and that is not a bad way to exit this life for any of us, comfortably as possible, I mean.