The best term a parent wants to hear following surgery on a child. What that means is minimal bleeding, no complications, and they were able to successfully remove two pieces of lung, each about the size of half an adult thumb, each with some suspicious looking contents. No news yet about those contents. I was able to suit up and go into the operating room with her so that I held her hand and listened to her complain until she fell fast asleep. Her last words were, "I feel funny." The words before that were, "What are you doing? Why are you doing that?" "This bed is too hard! This pillow isn't comfortable!" "Why are you doing that?" "I'm cold!" "I hate this." "This isn't really necessary!" "Why are you doing that?" "That stinks!" "I don't want to have surgery!" "Why are you doing that?" "I love you, too."
The doctor says we are in a catch 22 in that he doesn't anticipate the meds to be able to combat the infection without neutrophils. He doesn't anticipate that the infection will allow us enough time to wait for neutrophils to grow. Any crisis (which could happen anytime and suddenly) would necessitate going directly to transplant within a couple of days. They are "working me up" as the donor for that possibility while continuing to look for a better match should we have the luxury of time to use another. A haplo donor (which is what I would be, a half-matched family member) doesn't have much chance of working, perhaps 20%, although in this hospital the odds might be a bit better as they are more experienced and use many preventive measures related to risks. However, no doctor wants to take a patient to transplant with an infection of any kind, particularly a fungal one in the lungs. It is, as he described to me before we ever came, a transplant doctor's "worse nightmare." I said to him today, with my voice shaking, "the odds are really not in her favor are they?" He said what so many have, the odds for her will be 100% or 0%. I said, "Yeah, but walking across the street could be 100% or 0% for any of us, but chances are we'll make it across." He nodded and said, "As long as she has any chance above 0, we'll do everything we can." I said, "I know you will." And I do, and while that makes a tremendous difference, I am still scared to death! The idea that we went into this with 70% survival odds and thought that was bad, and now they've pretty well flipped! I asked one doctor today about the odds of her surviving a transplant with me as the donor and buying enough time for a better match later, she said it was possible but that one transplant (like each transfusion) lessened the odds of a subsequent one working. Yet they do it when there is no other choice and we've met parents of kids who've had multiple transplants. They also transfuse white cells when there seems to be no other choice. We had been told that that makes kids "really sick." She could handle that I thought, but today "really sick" was clarified to mean she would probably need to go on a ventilator. "We only do it when there is a crisis and there seems to be no other options, but it is a possibility in her case."
The good news is that everyone keeps saying, "She looks great." Tonight, with three incisions (one in her chest, one in her side, one in her back), a chest tube draining blood and fluid, blood flowing in because her red cells have dropped dramatically (a small concern at this point, which would be a major concern were it not for the fact that she looks so good), she has eaten some chicken and then asked for dessert. I asked if she would like candy, a brownie, or a cookie. "Yes," she said. "One of each please." I brought one of each and she had a few bites of two different cookies and a brownie and then said, "I think the only thing else I could eat would be a few pieces of candy." She did. This child ate nothing for the four days prior to our departure and has had one small meal each day since we arrived. The doctor keeps checking on her and scratching his head, saying, "Good to see she hasn't lost her spunk." "Spunk" is one euphemism often used around here for her. The other is "She has a lot of personality." Truth is she's cranky! Bottom line at this point: clinically she's in bad shape, but she feels, acts, and looks remarkable...considering. We watch fearfully for signs of her appearance to match the numbers, but not yet. Please, God, not ever!!!
For now, Kinsey is busy preparing for Jillian's birthday in a few days, making decorations, etc. and planning a hospital room party. We have a few family members coming this weekend for a Jillian party. They have not yet been able to see each other as Jillian had a brief minor stomach upset/fever on the trip here one day, and we are being really cautious.
Audrey and I are both staying up here at the hospital tonight as we thought Kins might need some additional care. It is becoming increasingly difficult for the staff to give her all her meds through one line. They suggested placing a second line today and I objected asking if they could first attempt to better coordinate the scheduling of meds to see if there was a possible way to avoid the issues they were concerned about: convenience and flexibility in administering them, compatibility, wait time in between to observe for reactions. The doctor agreed and as a result (esp. with the addition of a 3 hour transfusion) she will be getting some biggies all night tonight and will be monitored closely. At this point, a little sleep interruption is better than additional surgical procedures. Jillian is with Aunt Ann tonight, where she wants to be and while we feel a bit guilty about "neglecting" her, we plan to try to make her birthday as special as possible under the circumstances, and we can't help but feel, "There will be plenty of time later to make it up to her," something we cannot be sure of with Kinsey.
Friends and family in Kentucky, New Mexico, and Arizona continue to work on various fund raising projects and we appreciate that so much as the costs continue to mount with additional biggies looming. And a very special thank you to my little sister who appeared at our hospital door Saturday morning at 6:45. She waved. I waved back, half asleep, thinking: the new nurse, shift change time. Then I thought perhaps she was a Resident about to come in and I'd better get up to talk to her, so I put on my glasses and almost cried. Her visit was a shock and a godsend during an extremely lonely and fearful time. She played with Kinsey. They played tricks on me. We had a pizza party and watched Willie Wonka and the Chocolate Factory twice. I was able to actually leave the room briefly and step outside. I was able to go to the chapel and cry alone without worrying about Kinsey seeing me. I even wrote a brief letter to God there. I am anxiously awaiting his reply.
Our new direct email is CaringForKinsey@aol.com, but all ABQ email will be forwarded here. Thank you all again and again for your support, love, prayers, and for being there for us for the long haul.
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