Good Things Through Bad Times

I've spent over a month now sharing some painful, terrible things with you all. Pain: That's the dominant emotion controlling our lives right now. On Saturday, Mom was transported from Norwalk Hospital back to Yale. She is, once again, in the liver and transplant unit, 9th floor, west pavilion--a place we have come to know well. Most of Mom's time since early April has been spent in this unit, with several weeks in the ICU and three brief bouts in three different rehab centers. Every time Mom leaves Yale, the medical staff, who know not just her but all of us well, tells her they will miss her but do not want to see her back again...But she always ends up back. ----------------------------------------------------------------------------------------------------------------------------------------------------- Mom has had a very similar problem in the past to the one that has brought her back to Yale this time: Her bloody vomit the other day was caused by three verices (vericose veins inside the body). In the past when this has happened doctors have "banded" the verices to keep them from bleeding any more, but this time they have weighed the risks vs. benefits and opted against taking those measures this time. Also, a few months ago Mom had a "TIPS" procedure in which radiologists placed a shunt in her liver to help blood flow. The shunt is not big enough and has a small blockage, so it has become important for her to have a bigger shunt swapped out for the current one in a "revision procedure." The problem: this is a holiday weekend, and most specialized doctors such as the interventional radiologist do not work weekends or holidays except in emergency circumstances. Mom needs this procedure, but others in the hospital need the interventional radiologists too. She is one of fifty people in need, and therefore cannot get the procedure until tomorrow at the earliest (bearing in mind that this blockage most likely is not a new problem). ----------------------------------------------------------------------------------------------------------------------------------------------------- In addition to this, Mom is hallucinating often. I often hear her say things like "get the sink off the floor," "No thank you. Mom," and "I love you too" while I am alone with her and she is wide awake. These comments are usually followed by "There's no one there, is there?" Or "I'm imagining, aren't I?" Her problems are not strictly medical; She is in a scary and confusing place right now. ----------------------------------------------------------------------------------------------------------------------------------------------------- Hopefully, this will be a quick visit at Yale. We are tired of seeing Mom sent to rehab only to return quickly to Yale. Every time she leaves, we say that we will not be returning until she is there for the transplant surgery. Maybe--just maybe--one of these days that will be true. ----------------------------------------------------------------------------------------------------------------------------------------------------- Enough depressing news, though. There is no good "news," per-se, but good moments and small victories over the past several days. Just before Mom transported to Yale on Saturday, she ate. She has not been eating much at all lately. She finished half a steak with onions, a piece of toast, and half a bowl of cream of wheat all at once. Small victory indeed; We always worry, but we worry that much less when she is able to hold food down. ----------------------------------------------------------------------------------------------------------------------------------------------------- This weekend saw very high spirits in a very low place overall. My stepsisters, Megan and Beth Anne, came from Ohio to visit with Mom. She loved the time with them and enjoyed every minute of it. Yesterday we got to do something as a family that we have not been able to do in a long time: We played a game. Mom's nurse brought in an extra rolling table, we pulled the couch in her room toward the bed, set up the Cranium board, and spent over an hour just playing as though nothing was wrong. We were so blessed for that carefree time. ----------------------------------------------------------------------------------------------------------------------------------------------------- Another shoutout to Mom's medical staff. They are amazing. I made a comment yesterday, about how I'm sure we're not the only ones who cycle through the unit repeatedly. Mom's nurse concurred, but said it's nice because it enables them to build relationships with patients and families. We are lucky to know this to be true, and to have nurses' support and expertise through every ordeal. They make everything possible from us playing our family game yesterday, to keeping Mom comfortable and alive. We are fortunate to have them as a part of this journey.

The girls after a rousing game of Cranium. Mom was a good loser.