Okay. First, last night's email was not supposed to be sent. I was distracted and tired and realized my thoughts were somewhat more scattered than usual and then Jillian needed to potty and wanted me to rock her, etc. So I simply (I thought) saved the email to complete later and send today. Ann even showed me how to do it and we both thought mission accomplished. Obviously I'm not so good with the technology stuff. So, mistakes aside, I apologize for the incompleteness of it. For example under things we are asking everyone to consider doing I listed 4 of 6 and stopped. The last two are:
Send Kinsey notes, cards, drawings, jokes via real or email. She very much enjoys getting both; and
PLEASE take the time to appreciate everyone in your life you love. DO NOT take them (or their health) for granted. I never thought I did. But I did. There were so many, many times I would work late or work on the weekend at home and think, "I'll make it up to them later." You NEVER know when and if "later" will come or how much later you've got. And the truth is you can't really make it up. Period. Now onto the new update. I'm starting to name them as well as number them so I can keep up.
The roller coaster theme and good news/bad news continues. Last night after a relatively good day, Kinsey had a low fever but went on to sleep. About 1 a.m. or so she woke crying about a bad pain in her side. She said she couldn't breathe well because it hurt so bad and she was breathing very hard and fast but shallow. We took turns holding our hand on her side, which helped and she went back to sleep. She began to feel hotter and we checked her temp to find it had gone up to 103.8. We gave her Tylenol and put a cool rag on her head. She began crying again about the pain in her side and the rest of the night went on that way, intermittent high fever, chills, pain in the side. We debated about E.R. vs. waiting for the clinic to open and decided to wait. At 5:45 we gave her more medicine and waited the remaining couple of hours before we could call. Before they opened we left a message and were soon called back. The doctor advised that we needed to bring her in and that they would most likely admit her. I started to cry and couldn't face the possibility of telling her this news. It was a major battle to get her up and to take her a.m. meds. She cried and said she didn't feel like going. She said her pain was just "regular, not Aplastic Anemia." Her fever was just "regular, not Aplastic Anemia." "It's not necessary," she kept repeating. We took her in her P.J.s and she slept the entire trip. I got her a wheelchair when we arrived and by the time I returned Audrey has dressed her. We had her bag packed but were still praying she wouldn't have to stay. The nurse gave us the WONDERFUL news as soon as we walked in that they'd been talking to the Home Health Care Service that provides Kinsey will all our broviac supplies and they would be able to come out and train us to administer the IV antibiotics that the doctor felt it necessary she get on right away. They gave her "a big drink of water" (IV fluids) and started the antibiotic. We were told she'd probably need a red cell transfusion (which takes about 4 hours). I had had a bad toothache all night which started yesterday afternoon and had not stopped. Since we were going to be there for some time, I headed down to the only dentist in town I had been able to find who would see me today. Before I got there, Audrey called to say they were letting her go shortly, no transfusions at all today. ??? I went on to the dentist explaining that I would need to reschedule if he couldn't see me right away. He did and it only took a few minutes for him to tell me I needed a root canal. "Okay," I said, "but not now." He gave me an appointment next Wed. and a prescription for mega antibiotics and pain pills. I've taken the first and just told Ann there were 3 of her floating around as I tried to talk to her, so who knows what I'm writing here? Anyway, enough about me. The only interesting part is that my reaction today to the suggestion that I should have a root canal was identical to what it would have been (today) had someone suggested I have chocolate, "Okay."
I questioned WHY Kinsey wasn't being transfused when she had the same numbers as when she'd been transfused before. Her doctor said he didn't transfuse numbers; he transfused patients. His implication was that he disagreed with the other doctor's decision to transfuse last weekend. I know they can't ALL work every day, but I sure wish they could get on the same page!
Kinsey came home, with a brief stop at Sonic while my scripts were being filled (if you haven't, buy pharmaceutical stock. We are single-handedly fixing any slump they may have felt). She ate well and seemed to be feeling better. The home nurse trained us all on SASH procedures (Saline, Antibiotic, Saline, Heparin). We're glad Ann (the real nurse) is here.
Since I've been writing this, Kinsey woke crying that she felt "really, really bad." Her temp was 102.8 and the Tylenol Audrey gave her seems to have helped because she's chatting happily at the moment.
Kailee and her mom Linda were at the clinic today and Linda told me she and her husband had just returned from a Seattle visit to get a 2nd opinion as Kailee is not doing well. Her numbers are terrible and she's had another severe nose bleed (which is how her disease initially presented). She said there were some strong differences of opinion and we had "a lot to talk about." So that made Audrey and me nervous and we are anxious to hear what she has to say, but don't even want to think about the possibility of not being able to totally trust those who are caring for Kinsey and making life or death kinds of decisions.
Today at the clinic, Kinsey was very upset and uncooperative initially. She kept saying it was all a mistake. She didn't really have Aplastic Anemia. They were confused. She was fine and didn't need to be there. She didn't need a bracelet (necessary when transfusions are likely to occur). She didn't need to have her temperature checked or her blood pressure taken. She screamed at the nurse that the blood pressure cuff caused "petechiae." The nurse was very impressed with her vocabulary, which is growing by leaps and bounds. She is reading fairly well and no one has taught her. Although she has had so much read to her in the last month that I'm sure that has had an impact. She said she really needed to go to the bathroom, but she was NOT going to pee in a cup. She was going to pee "regular." Period. She was not going to take that "hateful" IV pole with her into the bathroom either! She was going in without a cup and without a pole and was going to pee regular. It made me think of my dad years ago during a hospital visit. They brought a portable urinal thing into his room and he said, "No siree. No how; no way will I piss into that thing. I am going to get up on my two feet and walk into that bathroom and piss like a man." The nurse objected, but he did. In Kinsey's case today, it was precisely the peeing in the cup that got her mood turned around. We stared making jokes about me being such a great pee catcher. It has in the past gone about everywhere but the cup including of course all over my arm, etc. Anyway, I've gotten much better and when the cup overflowed after Kinsey, Audrey, the cup, the pole, and I finally made it to the bathroom, Kinsey and Audrey started cheering and laughing. Kinsey announced to everyone that her mommy was the greatest pee catcher in the world. She said, quite loudly, "Karen Morrison: Excellent Pee Catcher! Greatest in the world!" and she started suggesting that I get a van with a sign on it stating just that. Instead of a dog catcher I'd be a pee catcher. The nurse allowed as how this could be profitable since others seemed to not do such a great job. All I can say is if it takes getting a little Kinsey pee on my hand and arm to make her laugh, I'll do it (excellently) anytime. I even told her she could pee on my head if that would make her better. She laughed a lot (you know potty humor is big at that age).
She continues to write in her journal. And last night she asked Ann if the world was turning around, Ann told her it was as it always does. "No," she said, "I mean is it all turned around? It seems like it is. I've got this Aplastic Anemia. Our friend Jim's parents are really sick and Mommy's friend Ms. Moore in CT is sick too. We went there once when I wasn't so sick. I know she's much older and I'm only five and Jim's mom and dad are older too but it might be hard for them too. I'm not saying it's not hard for them. It's just instead of the healthy part of the process, I've got this Aplastic Anemia where I have to take so many medicines. Sometimes I feel like Jillian is a little embarrassed. And she's jealous of something you should never be jealous of, unless you have a big sister that you love and care for, and it seems like every day she has to go to this place called the clinic. I like to write in my journal about everything that's happening with my Aplastic Anemia. It's probably pretty hard for everybody who has it. I know of two other little girls who have it, but one of them it's gone. I don't know her but she looks like a pretty cute little girl."
We made some headway with the insurance company today on the "in" or "out" of network argument. Most of those who have given funds so far want them to go for the playground equipment and yard rather than doctor bills. One Tucson friend emailed us tonight that she wanted to "buy Kinsey some grass." I told her, as we are from Kentucky, it will of course be blue grass of which anyone would be proud. Helping Kinsey to create her own little Rainbow Town (which she talked to the hospital psychiatrist about at length) is a primary focus right now. She needs a little retreat (outside the house) where she can play safely or just sit. We all do. I have nearly panicked with fear when I've been out and realized someone I was near was perhaps ill. The thought of bringing something in to Kinsey or even getting sick and not being able to be around her is unbearable. I told Audrey if we could all go into a giant bubble for a year and that would make her safe and she could receive treatment there safely, I'd be glad to do it. Of course that would present a few logistical challenges. Details, details. Enough drug-induced stream of consciousness.
I'll close with a humorous note: We have trained Jillian not to kiss Kinsey anywhere on the face to avoid germ transfer. When my boss, Ms. Pressley, was visiting the other night with another co-worker, Ms. Grandjean, they got ready to leave and Jillian kissed Bettye on the knee. It sort of caught her off guard and we all laughed. Jillian thought she'd done something wrong until we explained and told her it was fine to kiss someone on the knee. As soon as you read this, go kiss someone you love, anywhere you want. Hug them, too, and don't let go for a long time.
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