Kinsey has had a pretty rough weekend. She woke up Saturday not feeling so hot and we took her to the clinic as planned. She got a CBC (complete blood count) to check her numbers and they indicated that her platelets were down to 14,000 (200,000 - 300,000 is normal; below 20,000 is dangerous). A transfusion will normally boost her to 80-97,000 and transfused platelets last up to 9 days. Anyway, she got a transfusion and after only 4 hours there, we were able to come home. We had promised her to take her on a picnic (to find a secluded spot of grass and spread out a blanket to eat sandwiches and enjoy fresh air) after the clinic, but she punched a nurse and said a few nasty things to her which resulted in a few "consequences," one of which was no picnic. She didn't seem to feel much better anyway after we got home (although she did cry a lot about the loss of that "picnic").
By Saturday night, she was running a high fever, which Tylenol would not bring down much. We called the doc. He said we needed to take her to the E.R. About 10:30 we arrived and four hours later we were able to bring her home. What they did in that 4 hours (about 30 minutes worth) was to check vitals, do another CBC, throat and blood culture, urine test and give a dose of IV antibiotics. We gave more Tylenol and her fever wouldn't come below 104. They sent us home with the sage advice to "Continue doing what you're doing and if you can't control her fever, call the doctor again." I asked the Resident what he meant by "control her fever," as we were obviously unable to do that. He called in the Attending, who explained to us (slowly because I guess we look stupid) "fevers are caused by infection," and that he could admit her but "there's no telling what she'd be exposed to." We explained that we understood what caused fevers and had no desire for him to admit her but simply wanted clarification on directions. Do we call the doctor if her fever goes higher than 105? 106? If it remains at such heights for more than 6 hours? What?
He said fevers were not dangerous and brain damage from them was over emphasized. Not to worry about that. However, he told us, her platelet count was only up to 44,000 which was quite "worrisome" as she had just been transfused that morning. He said that would indicate that the "protocol" wasn't working, that her body was creating antibodies to kill the new platelets, basically "chewing them up" as fast as she got them. We told him that her doctor said we'd have to wait a year before they determined if the "protocol" was a success or failure and that another doctor had said it would be "at least a month" before we should start to worry. He said, and I quote, "I think you need to start worrying now."
We left, debating about whether to panic or assume he didn't know nearly as much as he thought he did. While we believed he was only 1/10th as smart and as important as he believed, we still felt compelled to panic a bit. We got her in bed about 3:30 and set the alarm for 5:30 (the very earliest we could give more meds) to check her temp. We didn't sleep much and at 5:22 took her temp. It was 105. We gave more Tylenol and she slept until about 9:30. It was up again but not as high; however, she felt, in her words, "really horrible!" She didn't want to get out of bed. She looked really bad, bad color, raccoon mask, droopy. We fought our way through the AM medicine ritual (two syringes of antibiotics, six pills of steroids, and a heparin flush for her broviac). She cried. We tried not to. And then about 30 minutes later while I was reading to her in bed (Harriet the Spy), she suddenly perked up and said, "I want to get dressed now" and "Can we go on a picnic today?"
We called the doctor to clarify next steps and to ask about the platelet issue. He called back and said her blood culture had not yet grown anything and she probably had a virus that she probably picked up at the hospital (despite her mask). He still thought it was a good idea to take her back to the ER for another IV antibiotic round. As for the platelets, he said it was her first "less than optimal response" to a transfusion and could have been caused by a few different things. Did it worry him? "Some, but not to panic yet." He said if she had another "less than optimal response," he would look at HLA matching her platelet donations and set up a system where she would probably get platelets from the same person every time (something I'd been arguing for, something he'd said was a logistical nightmare to which I'd said, "So?"). Anyway, he wanted to see her as planned at the clinic tomorrow where he said they'd do one of the two weekly CBCs; I reminded him that this week she'd already had 4. Yeah, yeah, whatever.
So we took her on a picnic. She wanted ham and cheese on wheat bread from Subway and, believe it or not, they had no wheat bread. They had no white bread. They had only oregano-something, garlic-something, and oat-something. Kinsey and I were already at the park lying on our backs looking at the leaves and making wishes. Audrey called to report the limited bread selection and Kinsey reluctantly settled for McDonald's (she doesn't like McDonald's much, as most of you know. She's a strange kid that way). But, like with the Taco Bell food, she had a great time! We'll just have to do better and plan and make the right food next time. After we'd been there a while, Jillian got excited chasing bugs and started running around. As soon as Kinsey couldn't stand it anymore and tried to join her, her fever shot back up to 103. We gave her Tylenol and decided it was time to head back to the ER. We had pretended to be a normal family on a normal Sunday outing long enough and it was back to reality. She was a real trooper about it though, and tonight we were only there for 2½ hours...for 15 minutes of treatment. Audrey almost finished reading her the third Harry Potter book while we waited. When we got home, I told her I needed to wash her hair, a real ordeal with the broviac. She said, "Okay, Mom, but not yet. I just got here and want to take a break." I told her okay. She took a break before the PM medicine ordeal began, the dreaded cyclosporine and more Tylenol for fever. We tried to chase it with honey and Ann got a lot of honey all over her shirt, but it seemed to work better overall. Tomorrow morning we told her she could sleep in before the clinic.
Quick update on the fund and awareness raising efforts: We now have Kinsey T. Morrison funds set up at both New Mexico Bank and Trust and Wells Fargo. We have already received two very generous donations (one anonymous, a card with three $100 dollar bills stuck in our door; we have since identified and confirmed the suspect, Kinsey loved working on that mystery) and another gift for $1000! Thank you to the three wonderful friends responsible! The web site is coming along and is going to be wonderful. I've been telling strangers (the few I've seen) about it. It should be ready in about another week. I'll let you all know when it's there. The address will be www.CaringForKinsey.com. Very special thanks to Steve Fox at ABQ.COM for donating his time and talents to making that possible!!! I've never met Steve but we've exchanged many emails and I am grateful for his kindness, his knowledge, and for our good fortune at having a mutual friend in Richard Nadolny.
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