No fever for the last 30+ hours (in fact it's been below normal). The biopsy went well (no excessive bleeding) but they took nothing out of her cheek as they said there was nothing. The infectious disease docs had thought there was a pocket of infection/hard tissue/an abscess??? Nothing. No results from the gum tissue yet. We should have preliminary results back tomorrow afternoon as to if it appears to be fungal or bacterial. Definitive results should take several more days or weeks. She had no reaction to the first dose of the heavy-duty anti-fungal antibiotic yesterday (slept through it). That's all the good news for now, except that the hospital cafeteria switched from Coke to Pepsi.
She was given the wrong drug (at least not the one the psychiatrist recommended) yesterday prior to her surgical procedure. We were not told that they switched and didn't know until today. We only knew whatever they gave her to "calm" her didn't work. She kept saying she was worried and scared and they wheeled her down while she quietly sobbed. She cried and reached for Audrey as they made Audrey stop and took her on into the operating room. There is, in my opinion, no reason that should ever have to happen with a small child.
They told us today that her Cyclosporine levels were even higher than before and they were going to once again cut the dose by 25%. The doctor explained that the anti-fungal and Cyclosporine combined spelled kidney problems, another reason to cut it.
Audrey, Jillian, Kinsey, and I spent a little time out on the hospital playground today (about an hour before she had to get back to her IV pole). She seemed to enjoy it some, but not a lot. Her energy is so low and she's so sad and scared it's hard for her to get excited about swinging. When she got back to the room she crashed.
I spoke to the Milwaukee doctor yesterday at length. He is committed, confident without being arrogant; obviously knowledgeable, warm, caring, and very flexible. He told me, "I can't make you any guarantees, but if you choose to bring her here, I will work my butt off to save your child." We're going. He has emailed one of the docs here, and has told me how to begin arranging a hospital-to-hospital transfer. He said he thought the hospital ambulance plane from there could come get her. I will be calling in the morning to attempt to arrange that. We are hoping to leave by Thursday or Friday. She could need to be there several weeks or months. He thinks by mid-June he'll know if the medical management should be continued or if we should move toward a transplant. He wants to start the wheels rolling right away regarding finding a match, just in case. But he emphasized that he always exhausts every other possibility before going to transplant given the short and long-term side effects as well as the high risk (50/50 at best).
I told a dear friend last night that sitting in or walking around the hospital for hours and days changes one's perspective. I find it oddly comforting to be near so many other parents in similar situations. We don't talk generally but exchange knowing looks in the halls as if to secretly acknowledge that we are all now citizens of this alien land few know exists. I find it oddly comforting in a truly twisted way to see children for whom my heart aches, in wheelchairs, drooling unable to speak or move much. "We are better off than they," my mind subconsciously notes. And yet, I am not sure of that. How can I know? I saw a woman Friday with a small baby over her arm, a wheelchair/stroller beside her, oxygen tubes running from the back of the stroller to the baby's nose. I couldn't say what was wrong with the baby's face exactly but something clearly was wrong (nature's way, I read recently, of warning potential mates and therefore avoiding offspring). The mother swayed back and forth the way mothers holding babies will sometimes do, talking animatedly to other parents waiting in the lobby. As I passed she was saying, "Yeah, my husband and I have five kids. Oh, and this one," she added quickly, nodding to the baby without looking at her, "and we have always...." It hit me so hard what she was really saying. We have five real kids, five normal kids, five healthy kids ... oh yeah, and this one. Now don't get me wrong, I'm not being judgmental. I've never been in her shoes and have no way of knowing how they would fit.
There is a baby next door to Kinsey who has a "very rare syndrome." There have been apparently 5 children in New Mexico with this syndrome, all Hispanic and this has some doctors and nurses scratching their heads about the connection. The oldest of these children is six and has just learned to walk. Two have died at age 2. They think the baby is deaf (a good thing for her at the moment as she is next door to Kinsey). Hours and hours and hours go by with no one there. The baby is always on her back eyes open wide when I've seen her. She rarely cries or fusses at all. Her face, too, is clearly different. The first time I looked in as I passed, it was a reaction to her fussing. I felt so sorry for that little girl having no one to hold her all night and most of the day. When people do come to see her, there's dozens of them and they all gather around her crib and peer in and shake heads. So many of them that several must stand in the hall. And then they leave. The nurse told me the mom was a "graduate of the NICU" and so very used to leaving her baby for hours and days. My baby, Kinsey, was in the NICU for only 6 days. I never stepped outside the hospital door and Audrey only did to get me clean clothes and to shower at home. I showered in a public bathroom shower stall. I tell Kinsey about some of these babies and little children who have no one with them and she is truly baffled. It seems to her, incomprehensible that a parent could leave a child for more than a few minutes under these circumstances. And she is perhaps too spoiled, perhaps too sheltered, perhaps too indulged. But I am glad she feels that way. And again—don't get me wrong—I am not judging this woman, this woman whose baby has probably spent as much of her short life in the hospital as out, a baby whose life is almost certainly going to be brief. I cannot know what her shoes are like either, and I am grateful not to be in them.
I have always known there were sick and starving and dying children all over the world and that bad things happen to children every day. I try not to be too outraged that this could happen to me, to us! I do not believe in comparative pain. I only know that mine is so much greater than I ever imagined pain could be. I have wasted many wishes in my life (I wish we could afford a newer car, I wish it were warmer today, I wish it weren't so hot, I wish I were thin) but even so, I can honestly say that I have never made a thoughtful wish (as I tossed a coin into a fountain, blew out a birthday candle, or just pondered in a non-ribial moment that wasn't the same: "Please keep my family healthy, happy, and whole." Every time. (So don't put much stock in those fountains or candles I tell you).
My greatest fear (something that both fascinated and frightened me greatly) growing up was death, particularly my own. The instant I became a mother that fear shifted to the fear of losing a child. I don't want to die, but I no longer fear my own death and it seems as inconsequential as a root canal almost at the moment. I sat last night remembering the words of a wonderful teacher many years ago, a teacher who is now my partner and friend and co-parent. In reference to a series of poems with the same theme: "It's better to break a heart than do nothing with it." Being one who likes to argue, she asked the students, "Is that true if the pain is so great the person commits suicide?" I read in the "How to Cope with Aplastic Anemia" booklet that one must always focus on the positives, the gift of the life as it was, as it is, no matter how limited it becomes or even if it dies. One must be grateful that it was. And I asked myself if I could ever rise to that. It was a hard, heart-wrenching question to ask myself as a mother: "Would I regret that I ever had this child if I had to live through losing her?" I know the "right answer," and I want to know that I am big enough, tough enough, good enough, honorable and brave enough to give it, but I am not yet able to. I don't know how that mother's shoes would fit, and I don't want to. I pray as I look to this new hope, my hopeful hero in Wisconsin, to never be put to that test.
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