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Good news
There is good news. Very good news indeed. But I don't want to duplicate posts, so please see the post on keithbrown.com. 
Thursday August 30, 2001 // 11:54 a.m. est - [1 Comment] It's all set The doctors have had their say, we've made decisions, plane tickets are being purchased as I write. The good news is that Fiona's cardiologists do not think there is any rush, that there is no immediacy to her condition and that we could stop freaking out thankyouverymuch. Her surgeon will not -- will not -- concede that there is anything at all wrong with Fiona's aorta -- ascending, descending or otherwise. He simply does not believe that is possible, even after seeing her latest echocardiogram. He did build it just over a year ago, after all. The bad news is that they still want to do a cardiac cathaterization, just to make sure everything is as they think it is. The cath could reveal that Fiona will need surgery. They won't discount that entirely. In fact, Fiona's on the schedule two days after her cath, as a precaution. What I'm grappling with, however, is how there is such a chasm between what we were told by Fiona's primary cardiologist here and what her cardiologists and surgeons in California say. Now, as far as trusting whom on this issue, there's really no argument. The doctors in California have saved Fiona's life twice, against unbelievable odds. And as far as the pediatric cardiology food chain goes, they're right at the top anyway. The reason we were given for the difference of opinion is based mostly in experience. Not experience generally, but experience with Fiona's anatomy specifically. To the uninitiated, Fiona's heart looks terrible. Not only is there the main defect (Truncus Arteriosus) but then the secondary defect (Interrupted Aortic Arch) as well. And just to make things a little more interesting, Fiona has no Innominate artery, an oddly placed Carotid artery, some branch pulmonary weirdness and her aorta, (look at that, wouldya?) goes the opposite way it's supposed to, plus some ventricular and valvular oddities. Have I lost you yet? In sum, it's nearly impossible to get a good reading of her heart function from the outside, especially if the doctor has never seen her insides. Ergo, the cardiologist here was just doing her job -- passing Fiona's case to someone with more knowledge. And the bill for tapping the sharpest minds in pediatric cardiology in this, or any, country? Recent photos of Fiona. "She brightens up a room," one of her doctors said. If only my insurance company thought the same.
Friday August 3, 2001 // 3:45 p.m. est - [8 Comments] Waiting Later this morning, a group of surgeons, cardiologists and other specialists will sit around a table in a hospital 2,000 miles away and decide my daughter's fate. They'll talk about the unusual anatomy of her heart. They'll discuss gradients, blood flow, stenosis, pressures. They'll use words like "difficult," "unusual," and "rare." This same group of people, sitting in the same room, around the same table, in the same hospital, have had this and similar discussions twice before, with quite obviously positive results. But that doesn't make it any easier for us. Later today, we'll get a call and hear what they've decided. Then we'll act, swiftly. Like the doctor who delivered Fiona said to me just before he sent us to the hospital for my daughter's emergency arrival, "Things might move a little faster from here." But at least the waiting will be over.
Friday July 27, 2001 // 8:59 a.m. est - [14 Comments] Happy birthday, Fiona Elise Two years ago today, at 6:42 p.m. PST, Fiona Elise Brown was born by emergency C-section, weighing 3lbs, 9oz. Two open heart surgeries, one cardiac cathaterization, several blood transfusions, innumerable medical tests, pokes, prods and studies later, Fiona will spend the day swimming in her backyard pool, surrounded by people who both love and are in awe of her. Watching her today, each one of us, in our own ways, will likely remember a time not long ago when we weren't certain this day would ever come, and we'll thank God it has. Fiona, however, will run, play, and likely bonk her head on something. She'll eat ice cream, open presents, talk, walk and get very, very messy, oblivious to the undeniable miracle she is. And that's the way it should be. Happy birthday, Fiona. ---- The list has gotten considerably longer in the past year, but here is Fiona's first birthday Thank You card.
Sunday July 22, 2001 // 11:10 a.m. est - [16 Comments] Just go already Fiona's tiny, plastic shopping cart was moved from her upstairs room to the first level of the house the other day. I didn't think much of it at first. Her toys get shuffled around quite a lot. She gets bored, you know. Fiona likes to climb in the cart and get pushed around the house. The faster the better. Months ago, it's something we would do frequently, but the cart has been dormant for quite awhile. When the cart came to an abrupt halt at the kitchen table where I was sitting, Fiona directly behind it, Mrs. Keith looked at me knowingly and said, "Watch this." Fiona swung her leg over the cart, pulled herself in and situated herself in the basket. Knowing that this meant I was to provide some speed, I got up from the kitchen table. But as I got myself in ready position, something odd happened. "Go!" Fiona demanded. It was her first verb, and I wasn't ready for that. So, of course, I couldn't just "go." Until then, I'd only heard my daughter use nouns. "Apple," "water," "Dada," you know, nouns. Sure, she calls our two cats "Meow," but I don't really count that since she's using it as though it was a noun, proper or otherwise. Unlike her heart condition, her speech delay is something people notice. And there's a stigma attached to a child who doesn't speak as well as her peers. You can see it in other parents' eyes, that unspoken mix of pity, condescension, and relief that its not their child who can't speak. No one ever says anything, but you can see them thinking, "Thank God my child's not retarded." Fiona's a bright child. There is nothing wrong with her cognitive abilities. She just can't speak well. And don't get me wrong, she never stops talking. Ever. It's not infant babble, but it's not exactly English, either. It's somewhere in between. "Go!" Fiona demanded again, obviously somewhat irritated that I had ignored her previous command. So we did go. Oh, how we did "go."
Wednesday July 11, 2001 // 10:15 a.m. est - [11 Comments] Tomorrow will come soon enough A few minutes ago, a friend who had been out of the country asked me how Fiona was doing, 'cause, as he put it, "I worry about her." Yeah, we all do, I told him. But there really is no point in dwelling. I explained about the upcoming Cardiac cathaderization she's scheduled for, the likelyhood of angioplasty and the possibility of surgery directly thereafter. Its big stuff, certainly. And it does loom large, sure. You never forget about the seriousness of what is to come, but you do put it to the side because there is too much to do today to think about tomorrow. Yesterday, Fiona learned to bite from an apple (Yeah, yeah, Fiona's apple. Get it out of your system now). For someone who has such issues with eating, chewing and swallowing, this was a giant leap in development. Of course, there was no convincing her that it wasn't the "ball" she kept calling it, nor was there any way to keep her from trying to make it bounce off the kitchen floor. But she bit an apple. For this, we could celebrate. And that's what we do, I suppose. We celebrate today, because tomorrow, well, that'll come soon enough.
Monday July 9, 2001 // 11:45 a.m. est - [3 Comments] I watch the ripples change their size ... For over a year, many of you have watched this site, read, and were at least mildly amused, if not occasionally moved, by the minutiae of my daughter's day-to-day -- which I kept detailed here in the first person, as though Fiona herself were writing. Not any more. Although for at least the near future, I will continue publishing this site, but written in the third person -- as me, watching my daughter, not the other way around. Perhaps it will turn into a more generalized parenting journal, I don't know. But what I do know is that its time for it to turn into something else. It's just too cute. Not even cute, actually, but "cutsey" is probably more accurate. While Fiona is, of course, the cutest thing since cute was defined, it seems this log has become wholly defined by that. This is, of course, my own fault: A doting father probably shouldn't have quite so much license. For months now, Fiona has enjoyed a relatively "normal" life, or at least as close to normal as someone with the myriad of medical complications that she has can. I've relished in that, and done so quite publicly. Now that she's nearing the possibility of being on the operating table again, I'm re-examining quite a number of things in my life that relate to Fiona, not the least of which is this site. I've come to the conclusion that continuing this site in its current format is incompatible, slightly misleading, and simply not the best format to accurately depict the full breadth of my daughter's life. From this day on, this site, if it continues at all, will be radically different. Thanks to all who have supported Fiona and my family over the past yearish. I hope that the format switch will not change that. Keith.
Tuesday July 3, 2001 // 12:06 a.m. est - [14 Comments] |
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Fiona Elise uses her Greymatter. Do you? |