We are on the plane, headed to Milwaukee. I am sitting in the very back of a very small aircraft, right beside the small stow-away area. I can rest my arm in the cargo net. The good part is I am facing Kinsey. It's too loud to talk to her, but I have a great view of her and she can see me. We periodically give each other a thumbs up or I love you sign. She has just closed her eyes and I am fighting letting my mind get too idle. I hate what goes on in there when that happens. We were off to a really rocky start (literally and figuratively). Kinsey greeted the two Milwaukee nurses and the two Albuquerque ambulance drivers. Nurse Andy started cutting up with her and she was great. I can't remember if it was his suggestion that she put a thermometer under her arm or Nurse Michelle's insistence that yes, the blood pressure cuff had to stay on; whatever it was, it set her off! I think it was four people coming into her room quickly with lots of bags and tubes and pumps and other equipment, not to mention the gurney in the hall. Whatever it was, once disagreeability (Audrey will be so upset that I just made up that word) sets in, it's always hard to turn her around. She wasn't going anywhere! She wasn't going to ride on that little yellow bed! And she most certainly was not going to help them hook her up to all kinds of new things! No thank you! I calmed her down a bit in the bathroom (a necessity as there are no toilet facilities on this plane) and then she was okay, just a little nervous. She got teary and we asked them to go ahead and give her the little shot (in the broviac) of calming medicine they had ready if needed. She was good to go after that! But ironically, I found out later she never got it.
The ambulance ride to the airport was uneventful as was the shift to yet another little gurney, but then she did start sliding as they lifted her up and into the plane at a 90% angle. She hung on and so did Cecil B. Cozy (her little comfort creature). She was looking sleepy before we actually got off the ground and is now snugly tucked under a blanket with both nurses charting her every beep. She argued just a little about the oxygen saying it smelled horrible, but they compromised and placed it well below her nose.
Nurse Andy told me they are used to dealing with really sick kids and didn't quite know how to react to one screaming at them and wrestling with them. He saw the look on my face and corrected himself: "I mean unstable kids, you know on a ventilator, that sort of thing." Yes, I know. I remember when she was a little baby in the Neonatal Intensive Care Unit (NICU) for fever (later determined to simply be a reaction to the Hepatitis shot). The nurses used to coo at her, "Honey, there are sick babies here!" trying to quiet her. Then they'd deliver her to us and hand her over with, "Here's your delicate, dainty bundle of joy." To this day we sometimes call her our delicate, dainty bundle of joy.
Both nurses have gone on and on about how much we will like this hospital, how big the rooms are, how many kid-friendly services there are: TV/VCRs in every room, computer/internet access outlets, a huge playroom, a program so kids from all over with the same disease can chat on the computer. Nurse Andy told her she'd have a great view of the helicopter right out her window. They described water fights between the doctors and kids on the HOT unit (hematology, oncology, transplant) and told Kinsey there would be kids of all ages on her unit, which has 24 beds, but all of them would be dealing with similar diseases and issues. They told us too how nice it would be for her parents, our own bed in the room, private bath, a desk, space, and clean! For a split second, it almost seemed like a great adventure, a vacation of sorts, with all sorts of things for the kids to do and creature comforts for us, and then I remembered. I am told to expect a flurry of activity upon arrival. Doctor Margolis and others want to see her right away, check her over and review all her records, etc. I can't believe I'll get to see the doctor since we won't arrive until about 9:30, but nurse Andy said, "Knowing him you will."
Nurse Andy warned me to expect Dr. Margolis to change some meds and he advised that they hate to give kids things by mouth and avoid it if at all possible (since kids hate taking meds by mouth). Boy, if they can manage to get the cyclosporine in the broviac, Kinsey will have found a new hero (but I kind of doubt that). They may cut her dose enough, however, that she will be able to take it as pills (yucky but not yucky).
I was doing fine in the ambulance until they opened the back door so we could see Jillian waving goodbye. It wasn't Jillian who got to me; it was Audrey, looking so vulnerable and scared. Giving up control of a little child you've been the primary care-giver to since her birth is hard. Sending your child off in an ambulance with so much uncertainty is hard. Being totally helpless when you've always known the tricks to "fix it" is hard. You want to say, "She likes water and maybe a little apple juice, but she won't drink anything else." "She gets cold really easily and will probably need a blanket." "Oh, and she may act like she's 16, but she really is only 5. Don't forget that." "When she's scared she doesn't usually cry, she's more likely to scream." And I didn't have to turn any of that over because I have been telling them and yet the "giving up" of control of her and our lives was/is pretty overwhelming!
Audrey asked this morning, "Will we all drive back in the van? Will there be room for everything? Of course, Ann will probably not be with us, but...?" She realized the complete lack of an answer. Will we all come back in the van? Will we come back in a few weeks, a few months? Will we all come back?
I told her not to worry, we'd all get back if we had to buy a new van (especially since ours with its 100,000 + miles is a little ?) or we'd drive three vans. Let's just focus on getting there with the single goal in mind of bringing her back. The how was a little detail—something we would and could have control over and therefore a piece of cake.
I can't really explain how bizarre it feels to leave your home this way. I've traveled a lot and worked in a job where you are trained to expect the unexpected or be prepared for anything, but nothing has prepared me for this. I told Audrey, "Perhaps you should pack the bathing suits since we will likely be there all summer. No wait, Kinsey can't swim, but then if Kinsey is in the hospital that would be a great thing for Jillian to get to do, but then...." I just can't get a picture of what life is going to be like. I had a picture after her initial diagnosis. We gathered facts, researched on the internet, talked to the doctors and asked thousands of questions. And I had it all figured out: she was going to be treated primarily at home and would have to go to the clinic twice a week for tests and possible transfusions. She would have to be in severe isolation and our lives were going to change. Little things like we'd have to cook more since we couldn't eat out, but then we quickly saw that take-out from some of our favorite restaurants was still an option and there were even some restaurants with outdoor dining she could go to when feeling well. Sure we wouldn't be able to take her to the park next door, but we were going to have the backyard fixed up in a grand fashion with a great safe playground set-up, some grass and even a bench swing and hammock. As for her not being able to go to school, we told ourselves that a big part of the reason we liked the idea of private school was the student-teacher ratio and hey, she'd have individual attention from the teacher sent to our home (just like at the hospital from Ms. Kim, which she loved). And so on.... We mentally adjusted to the many ways our lives would change. We'd be meticulous about germs (we designated one bathroom as Kinsey's and placed hand wash gel all over the house). I disinfected her entire room, wiping down toys until I was tired enough to donate the rest to the upcoming rummage sale to benefit the Kinsey T. Morrison fund. We knew we'd have to be careful with her and insist she, too, be careful about any jumping around or climbing. We even were beginning to get Jillian to understand that "bonking" her sister on the head was a really bad idea.
The truth is, that never really was our reality, just what we visualized was coming. From almost the beginning we were hit with "complications" and unexpected reactions. The fevers, the rapid platelet drop a couple of times, the gum bleed—all meant additional visits to the clinic, the ER, and two more stays in the hospital. But until last week, somewhere in the back of our minds I think we still believed that stable reality was coming. She wasn't responding to the medicines but we had been told that takes time. We continued to think it was just around the corner. Each blip gave us hope of a trend. And even today, I am encouraged by the fact that she has had two days in a row with just a few monocytes (sometimes precursors to neutrophils). Her lymphocytes which are attacking her own body have mostly made up 100% of her white cells, so even a 1 or 2% blip gets one excited, especially if it happens two days in a row!
Audrey, Dr. McKinnell, Owen Wells (Kailee's dad), and Peggy Reed (from NM Bank and Trust) were on the radio yesterday talking about Aplastic Anemia. The host asked Dr. McKinnel if it was like AIDS and he explained that it was like the opposite to AIDS. AIDS patients have no immune system. Kinsey has a hyper-active one which has turned on itself. They treat it by suppressing the immune system in an attempt to calm it down, so-to-speak, in hopes that it will reset itself and start working again. So far, it is as stubborn as she is.
Unlike what I envisioned life was going to be like in Albuquerque, treating her out-patient for a year, I have learned that we not only cannot predict next week, we cannot predict tomorrow, or later today. And so we give up power over and control of our lives. We put our lives in the hands of doctors and nurses in this far-away place. And we hope. We pray. We wait. And while we wait, we continue to truly appreciate every moment, every laugh, every smile, in ways we never knew. Please do that, to not when you have a crisis, a threat to take away the life you have, but today while you have the life you have.
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