Well, it is 1 a.m. and I can't sleep. In 3-1/2 hours we will officially be up, readying ourselves for the trip northeast, and on our way to pick up Kim, Brandy, and Cory. Calmer tonight than all the others -- resignation is the thing we feel most right now. Whatever happens later this morning, whatever "they" decide, we are resigned to. I've tried for over an hour to get to sleep, but it's not happening. After listening to Bucky talk in his sleep and snore, I finally got up and headed for the first floor. He awoke to ask me if I was okay, I said I couldn't sleep and he said he hadn't been able to, either. I said, oh, yes, you have -- I've been listening to you snoring and talking in your sleep.
So, here I sit in the quiet of the family room, waiting for the clock to shake us out of our rest and the sun to light the way to New York. Hopefully when I check back in later today, I'll have a positive, pro-active plan to report thanks to our two doctor visits this morning.
Thursday, July 10, 2008
At the Wire
Again we get up at the crack of noon. Today we just laid in bed awhile and talked about people we know who have had neurosurgery. We are goal oriented at this point -- let's get this show on the road! This time tomorrow we will have been through the ultrasound and Dr. Olin's visit, probably having lunch and waiting for the hours to pass till we see Dr. Patel. I think Kim would like to see the kids before she leaves; I'm hoping dinner with them tonight is a possibility. Brandy has taken Kim to the beach for the day; I doubt it will be an all-day thing, as Kim tires so easily. Kim told me yesterday that if she's hospitalized in NYC for the procedure, it will be hard not seeing the kids for a few days. I know what she means.....going through that with Cory's new job and not having our Wednesday and Friday connections like we used to do is hard on us. Finding a job and going back to work once Kim is okay will make it even harder, as we won't be able to pick Addie and Ben up from daycare once in a while as we've done the past few weeks. Life is changing for us, one way or another.
Wednesday, July 9, 2008
Down to the Wire But Doing Better
Today was better, though we're still sleeping late each day. We've finally come to the acceptance stage of Kim's situation -- as Cory put it yesterday, "we can't change what's already happened." So we've gotten past the all the hysteria (at least temporarily) to the acceptance stage, and putting the whole thing in the hands of experts. All the "what-ifs" and so forth will be answered by the experts on Friday. Kim is about where we are. We brought her to our house and then out to get some late lunch today, and she is at the acceptance stage, too. We've actually been able to discuss the fact that any procedure that is done may be life-altering, and were actually able to joke about her possible future vegetative state (a new character for Veggie Tales -- Kim, the Karaoke-singing Kucumber).
The person hit hardest right now is Bucky. As I write this, he is napping again. He whose lot in life has been to provide for and take care of his family is feeling inadequate and helpless. I know that on Friday he will be his usual stalwart self, but right now he is trying to catch up on many lost hours of sleep these past couple of weeks. I'm okay, again, as last night, focusing on what needs to be done to prepare for the trip Friday morning. Kim has her two new pairs of pajamas, we've got our books and I'm assembling my crocheting/knitting bag with things to keep me busy while we sit and wait, assuming we'll have to do that this weekend. We put together Kim's file of hospital records and CDs of her MRI and angiogram, so the essential stuff is in one place. One more night (tonight) of sleep before the ball is in motion -- I say that because Thursday night will probably be a resting experience, with probably zero in the REM sleep department. Better to get up and go and get things going.
The person hit hardest right now is Bucky. As I write this, he is napping again. He whose lot in life has been to provide for and take care of his family is feeling inadequate and helpless. I know that on Friday he will be his usual stalwart self, but right now he is trying to catch up on many lost hours of sleep these past couple of weeks. I'm okay, again, as last night, focusing on what needs to be done to prepare for the trip Friday morning. Kim has her two new pairs of pajamas, we've got our books and I'm assembling my crocheting/knitting bag with things to keep me busy while we sit and wait, assuming we'll have to do that this weekend. We put together Kim's file of hospital records and CDs of her MRI and angiogram, so the essential stuff is in one place. One more night (tonight) of sleep before the ball is in motion -- I say that because Thursday night will probably be a resting experience, with probably zero in the REM sleep department. Better to get up and go and get things going.
Tuesday, July 8, 2008
If This Is Tuesday, We Must be Closer to Friday
So, Bucky and are still in bed at 11:30 this morning. Cory has read my blog from yesterday, and says to herself, "These people are really depressed -- I've gotta help them." So she calls on the phone and asks us to join her for lunch. We hurriedly dress and pick her up at AI. With much reassurance, she got us through lunch and we are doing okay tonight. Cory sent us an email from an FMD patient who has had FMD on both of her carotid arteries, and we read explicitly what surgery she had. Although the procedures sound ghastly, she is alive to describe them, so that in itself is very reassuring to us. Tonight we are a bit more resigned to whatever happens on Friday -- we know that some intervention is absolutely necessary, and the risk of not doing anything about the aneurysm outweighs any other possibility. It is our fervent hope that whatever procedure is in order happens quickly. I don't know how we will deal with a delay of another couple of weeks. It has been unbearable thinking about that damned aneurysm, knowing it's sitting there, capable of erupting at any time, wanting to hover over Kim but knowing it's not healthy for her or us to do that. As a parent, I've spoken many times about "inhaling" one of the kids up the stairs safely when she was little and she was precariously attempting the stairs herself, headed toward me. If I lunged forward to grab her, it could send her flying backwards, so I literally pulled myself back from the stairs into the hall, forcing the child to keep heading toward me. I feel like I'm doing that now, inhaling Kim away from the aneurysm, stroke, anesthesia, surgery. I obviously can do nothing to protect her from all of these, but my maternal connection is so strong, I feel like if I breathe for her, she won't have to breathe so hard. Just as I write this, I feel myself tightening my breathing, and reminding myself to relax (gotta look that one up in the dictionary -- can't remember what it means) and breathe.
So tonight, as I prepare to sleep, I am focusing on things I must do to prepare for the trip to NYC -- laundry is now done, and we must prepare an overnight bag just in case she is admitted Friday night. I've bought her a couple pairs of pajamas -- she'll feel better if she's not wearing the hospital johnnies. I'm thinking about things to take in the car to keep her spirits up and her blood pressure down. Even though she'll probably sleep all the way up, she's tired so much of the time. I have only two more nights to enter additional blogs before we head to New York. When this is over, I'm promising myself to get a really good massage. There's this one spot at the top of my back, right betwen the shoulders, that's just so tight. My whole back is so tense right now, my neck hurts, and my head feels heavy. Pobably sympathy pangs for Kim. I think a big sigh of relief is in order, but we'll just have to wait.
So tonight, as I prepare to sleep, I am focusing on things I must do to prepare for the trip to NYC -- laundry is now done, and we must prepare an overnight bag just in case she is admitted Friday night. I've bought her a couple pairs of pajamas -- she'll feel better if she's not wearing the hospital johnnies. I'm thinking about things to take in the car to keep her spirits up and her blood pressure down. Even though she'll probably sleep all the way up, she's tired so much of the time. I have only two more nights to enter additional blogs before we head to New York. When this is over, I'm promising myself to get a really good massage. There's this one spot at the top of my back, right betwen the shoulders, that's just so tight. My whole back is so tense right now, my neck hurts, and my head feels heavy. Pobably sympathy pangs for Kim. I think a big sigh of relief is in order, but we'll just have to wait.
Monday, July 7, 2008
If Monday's Like THIS, Can't Imagine Tuesday
Okay, so we both wake up around 10:30 this morning. Bucky's looking at me; I roll over and now I am looking at him. His first words are: I feel terrible.....I don't want to get up. He does anyway, goes to the bathroom, and I suggest he just get back in bed. He asks me to hold him. He feels useless, frightened, helpless. And today is only Monday.....we have Tuesday through Thursday to go through yet, and then the long ride to NYC. He slowly falls back to sleep, for another blessed hour; I rise and go about sorting laundry and putzing around, keeping myself busy, trying not to think about. But I still do. At 12:30 he calls for me -- he doesn't want to be alone right now, and neither do I, particularly. We need each other for moral support. He dresses and joins me on the first floor.
I convinced Bucky at 1 p.m. to go to Borders to stock up on reading supplies for the week and weekend. Then a nice lunch at Cheeseburger in Paradise. Without even thinking about it, the conversation turns to Friday and what to expect, revisiting the size of the aneurysm and the stability of Kim's carotid artery, assuring each other everything will be okay, even though we haven't a clue exactly what will happen. At one point I bury my head in my hands. I feel his hand brushing through my hair, assuring me everything will be okay. But his face doesn't look reassuring.
We got home around around 3:30; I went down to my studio to work on a project, needed something from Jo-Ann's, and told him I'd be back in a while. I get home around 5:30 -- he sits in the family room, reading a book. I sit on the couch and then he says, "I need to go upstairs and rest my eyes for a while." Our daylight hours seems to be shrinking day by day. Again, that feeling of uselessness overtakes us, and the best way to get past it is to sleep and escape the current maelstrom we are going through. I can only imagine how Kim is dealing with this....I dare not keep bothering her to see how she is.....she is as she was yesterday and the day before and the day before that....scared, tired, and aware that her condition is beyond hers or our control at this point. This isn't something we can put a band-aid on, give a little kiss to, and it will be gone in a day or two.
I convinced Bucky at 1 p.m. to go to Borders to stock up on reading supplies for the week and weekend. Then a nice lunch at Cheeseburger in Paradise. Without even thinking about it, the conversation turns to Friday and what to expect, revisiting the size of the aneurysm and the stability of Kim's carotid artery, assuring each other everything will be okay, even though we haven't a clue exactly what will happen. At one point I bury my head in my hands. I feel his hand brushing through my hair, assuring me everything will be okay. But his face doesn't look reassuring.
We got home around around 3:30; I went down to my studio to work on a project, needed something from Jo-Ann's, and told him I'd be back in a while. I get home around 5:30 -- he sits in the family room, reading a book. I sit on the couch and then he says, "I need to go upstairs and rest my eyes for a while." Our daylight hours seems to be shrinking day by day. Again, that feeling of uselessness overtakes us, and the best way to get past it is to sleep and escape the current maelstrom we are going through. I can only imagine how Kim is dealing with this....I dare not keep bothering her to see how she is.....she is as she was yesterday and the day before and the day before that....scared, tired, and aware that her condition is beyond hers or our control at this point. This isn't something we can put a band-aid on, give a little kiss to, and it will be gone in a day or two.
Sunday, July 6, 2008
T-Five Days and Counting
Today was a peaceful day.....only twelve hours of sleep since last night! We spent the day watching the Men's Final at Wimbledon, then scooted down to Cory and Brian's for lasagna and apple cake. Ben was awake the whole time and we had a great time playing with him. Addie woke up AFTER dinner and we spent the after-dinner time dancing in the living room and enjoying general mayhem.
Conversation at dinner focused on the upcoming July 11th visits in NYC; we are all hopeful that decisions will be made that day to bring a swift end to Kim's dilemma. To have to wait a few more weeks for her procedure to stop the aneurysm is too awful to think about.
Early to bed tonight -- midnight; back up at the crack of noon or later tomorrow.
Conversation at dinner focused on the upcoming July 11th visits in NYC; we are all hopeful that decisions will be made that day to bring a swift end to Kim's dilemma. To have to wait a few more weeks for her procedure to stop the aneurysm is too awful to think about.
Early to bed tonight -- midnight; back up at the crack of noon or later tomorrow.
Saturday, July 5, 2008
An Eight-Hour Day
The 4th of July came and went much as we had planned. We had invited Brian's parents, brother and nephew to join our family for a backyard celebration of the holiday. I woke up earlier than normal to make my traditional potato salad and baked beans; Bucky and I set up tables in the back yard, rearranged the patio furniture to sit near the water slide Cory and Brian brought, and cans and bottles of various beverages were packed into coolers so they were ready when someone needed refreshing. Cory ran over to Kim's to bring her to our house. When Kim arrived around noon she said she felt tired. It was a lovely afternoon with the little ones having a blast hurtling down the water slide, Brian thrusting himself down the kiddie slide, evoking giggles and squeals from the little ones as he splashed him like a performing orca at Sea World. We all enjoyed sitting under the umbrella with a little mist spraying on the non-sliders and cool drinks and snacks at arm's length when needed. Lots of good conversation, laughs, child juggling among adults, hot-tubbing. Kim was pleasant but you could tell she is depressed. She dared not attempt sliding down the water slide and landing in the pool -- such actions would have earned harsh screams from us, and she certainly wants to do nothing that causes her head to jerk around or get snapped quickly.
Just for a few hours everything was "normal". We ate burgers and hot dogs and all the other stuff around 2:30; shortly afterward, Kim went upstairs to nap -- she said she was really tired. Her nap lasted three hours. She awoke in time to freshen up to go to the Fireworks at Swift Park. Everybody went their own way to their respective cars and reconnected at the Park. Kim came with us; Ben got to come along in the car seat and enjoy Elmo on the DVD enroute. Addie was NOT happy with this decision of privelege. Cory's promise of a reward for being a big girl by going in her own car with Mommy and Daddy finally calmed her down.
We were lucky to get a parking space close to the park. Just a few steps and we were there. It was sprinkling a bit when we first arrived, but then the showers stopped and we were having a very comfortable evening. Brandy arrived shortly after we did, having gotten out of work and driving straight to meet us there. As the fireworks time approached, we remarked how lucky we were that the rain had stopped. Big mistake. With just minutes till launch, we started feeling rain, and by the time they were finally airborne, we were all getting drenched. In the past couple of years, the fireworks displays were a bit diappointing. This year -- we assume because it is an election year and financing was probably more generous from the local politicos -- the display was phenomenal. Two different times we thought we were witnessing the finale, only to have another burst of rounds shortly thereafter. When the finale finally did come, it was spectacular, and we all limped back to our cars, clothing drenched, quilts and ground coverings soaked, stroller seats in puddles. Kim and Brandy went home in Brandy's car, Bucky and I went home by ourselves.
TJ called at 10 p.m., assuming correctly that we were just about home from the fireworks, to say hi. Bucky and I stayed up till 2 watching movies. When we finally went to bed, we were beat.
I have no idea what happened the morning and early afternoon of July 5th. We arose from our slumber at 3:55 p.m. It took us a half hour to get the back yard back in order after the celebration of the 4th, and the biggest focus was on our patio where Addie and Graham made "tree stew" out of dirt, mulch, salsa, and Cory's snicker salad dessert she surprised us with. Bucky had to use the power sprayer to get the dirt out of the wicker furniture, out of the cracks between the patio blocks, out of the various beach utensils the kids had used to mix their concoction. When it was all cleaned up, we were exhausted again. Let's see -- it's about 4:30, we've been up less than an hour, and we're already exhausted. How do you spell DEPRESSION: Tired, tired, tired. Except for some plant clipping and reading out in the garden, we did little else today. A trip to Outback for a nice dinner, then back home to read and relax. We will be in bed by midnight -- I believe this will go on record as the shortest day of my life, and I believe Bucky's too. The topic of this coming Friday comes up repeatedly in our conversations, and we are willing ourselves to that day by sleeping more and having less awake time to count the minutes. We can't wait for the 11th to be over, to finally know what is going to happen, to see something proactive in returning Kim to good health. Today is an eight-hour day. I wonder how many awake hours we'll have tomorrow.
Just for a few hours everything was "normal". We ate burgers and hot dogs and all the other stuff around 2:30; shortly afterward, Kim went upstairs to nap -- she said she was really tired. Her nap lasted three hours. She awoke in time to freshen up to go to the Fireworks at Swift Park. Everybody went their own way to their respective cars and reconnected at the Park. Kim came with us; Ben got to come along in the car seat and enjoy Elmo on the DVD enroute. Addie was NOT happy with this decision of privelege. Cory's promise of a reward for being a big girl by going in her own car with Mommy and Daddy finally calmed her down.
We were lucky to get a parking space close to the park. Just a few steps and we were there. It was sprinkling a bit when we first arrived, but then the showers stopped and we were having a very comfortable evening. Brandy arrived shortly after we did, having gotten out of work and driving straight to meet us there. As the fireworks time approached, we remarked how lucky we were that the rain had stopped. Big mistake. With just minutes till launch, we started feeling rain, and by the time they were finally airborne, we were all getting drenched. In the past couple of years, the fireworks displays were a bit diappointing. This year -- we assume because it is an election year and financing was probably more generous from the local politicos -- the display was phenomenal. Two different times we thought we were witnessing the finale, only to have another burst of rounds shortly thereafter. When the finale finally did come, it was spectacular, and we all limped back to our cars, clothing drenched, quilts and ground coverings soaked, stroller seats in puddles. Kim and Brandy went home in Brandy's car, Bucky and I went home by ourselves.
TJ called at 10 p.m., assuming correctly that we were just about home from the fireworks, to say hi. Bucky and I stayed up till 2 watching movies. When we finally went to bed, we were beat.
I have no idea what happened the morning and early afternoon of July 5th. We arose from our slumber at 3:55 p.m. It took us a half hour to get the back yard back in order after the celebration of the 4th, and the biggest focus was on our patio where Addie and Graham made "tree stew" out of dirt, mulch, salsa, and Cory's snicker salad dessert she surprised us with. Bucky had to use the power sprayer to get the dirt out of the wicker furniture, out of the cracks between the patio blocks, out of the various beach utensils the kids had used to mix their concoction. When it was all cleaned up, we were exhausted again. Let's see -- it's about 4:30, we've been up less than an hour, and we're already exhausted. How do you spell DEPRESSION: Tired, tired, tired. Except for some plant clipping and reading out in the garden, we did little else today. A trip to Outback for a nice dinner, then back home to read and relax. We will be in bed by midnight -- I believe this will go on record as the shortest day of my life, and I believe Bucky's too. The topic of this coming Friday comes up repeatedly in our conversations, and we are willing ourselves to that day by sleeping more and having less awake time to count the minutes. We can't wait for the 11th to be over, to finally know what is going to happen, to see something proactive in returning Kim to good health. Today is an eight-hour day. I wonder how many awake hours we'll have tomorrow.
Thursday, July 3, 2008
Brandy
Bucky and I didn't know Brandy very well before Kim's stroke. Sure, she had come for dinner now and then and was celebrating holidays with us the past year, but we didn't really know much about her. Now, with Kim's stroke, we have discovered the wonderful woman she is. Brandy is 3 credits short of becoming an EMT. She works as a manager of an NTB tire store in New Jersey. The reason she has not completed the three credits she needs is that on a "ride-along" in her training, she came upon a murder scene she didn't expect -- when the woman was pulled from the scene, it turned out to be one of her best friends. The shock was too much for Brandy to bear -- she didn't want to have that kind of shock again. So she walked away from the training she had. Kim's stroke, however, stirred the pot again for Brandy, and she was in great form from the minute she got Kim to the hospital. She was right on top of things in the ER, noting blood pressures, beats per minute, and everything else you could keep track of. She knew all the right questions to ask the nurses and doctors, and between the two of us, we seemed to cover all the bases with the right questions of the medical professionals. When it was time for Kim's admission, Brandy was at her side, making sure she had everything she needed and was supposed to have. If something was supposed to be done at 10:00, she was checking on it if it hadn't been done by 10:05.
If they had allowed it, Brandy would have stayed all night long. Kim was very scared at night -- the thought of being alone without anyone you love with your brain about to explode is an awful feeling. Brandy did her damnedest to stay as long as she could each night.
The night before Kim was discharged, there were some tests that had to be done. Brandy stayed with her through both tests, and finally got home after midnight.
One night towards the end of Kim's hospital stay, Brandy called me -- she had called me every night to let me know how Kim was when Brandy left, and update me on any medical information that was new. This particular night, though, I opened up to Brandy and told her how impressed I was with her medical acumen -- that she seemed very comfortable in a hospital setting, that she has a sense about what needs to be done, a sense about timing, and tremendous amount of caring. That is how I found out why she left her EMT ambitions. I told her she was missing her calling. At this point, she told me she had been thinking about it, and with Kim's interest in nursing and this experience at the hospital, Brandy was reconsidering her career choice. This is one woman who belongs in medicine. Any where. The sky is the limit, which is exactly what Kim's own nursing school advisors told Kim last year. The two of them have tremendous potential. And we couldn't be happier that Brandy is part of Kim's life.
It was lovely to hear Brandy tell me how much she loves Kimberly, how she makes sure she shows her each day how much she loves her -- not mere words but actions. She is willing to do whatever she needs to take care of Kim. She plans to sell her house and move into a one-level apartment so that Kim can get around safely, with no stairs in the way. She has it figured out that one can be working while the other is in school, and together they can both reach their goals. Most people would be depressed by the going-on that first week, but Brandy found her soul that week, I think. She was energized, seeing that there was a different, exciting future for her and for Kim, and she was going to make it happen, even if she had to do it FOR Kim for a while instead of WITH Kim. I believe it will happen. In a storm, you'd want Brandy on your side. You'd never have a chance to fail.
Oh, did I mention that Kim's stroke and hospitalization occupied Brandy's week of vacation? Not once did I hear one word of complaint about that -- the focus was on Kim, getting her better, getting on with life. Brandy is wonderful.
If they had allowed it, Brandy would have stayed all night long. Kim was very scared at night -- the thought of being alone without anyone you love with your brain about to explode is an awful feeling. Brandy did her damnedest to stay as long as she could each night.
The night before Kim was discharged, there were some tests that had to be done. Brandy stayed with her through both tests, and finally got home after midnight.
One night towards the end of Kim's hospital stay, Brandy called me -- she had called me every night to let me know how Kim was when Brandy left, and update me on any medical information that was new. This particular night, though, I opened up to Brandy and told her how impressed I was with her medical acumen -- that she seemed very comfortable in a hospital setting, that she has a sense about what needs to be done, a sense about timing, and tremendous amount of caring. That is how I found out why she left her EMT ambitions. I told her she was missing her calling. At this point, she told me she had been thinking about it, and with Kim's interest in nursing and this experience at the hospital, Brandy was reconsidering her career choice. This is one woman who belongs in medicine. Any where. The sky is the limit, which is exactly what Kim's own nursing school advisors told Kim last year. The two of them have tremendous potential. And we couldn't be happier that Brandy is part of Kim's life.
It was lovely to hear Brandy tell me how much she loves Kimberly, how she makes sure she shows her each day how much she loves her -- not mere words but actions. She is willing to do whatever she needs to take care of Kim. She plans to sell her house and move into a one-level apartment so that Kim can get around safely, with no stairs in the way. She has it figured out that one can be working while the other is in school, and together they can both reach their goals. Most people would be depressed by the going-on that first week, but Brandy found her soul that week, I think. She was energized, seeing that there was a different, exciting future for her and for Kim, and she was going to make it happen, even if she had to do it FOR Kim for a while instead of WITH Kim. I believe it will happen. In a storm, you'd want Brandy on your side. You'd never have a chance to fail.
Oh, did I mention that Kim's stroke and hospitalization occupied Brandy's week of vacation? Not once did I hear one word of complaint about that -- the focus was on Kim, getting her better, getting on with life. Brandy is wonderful.
July 11th Can't Get Here Fast Enough
We are down to the one-week mark before the July 11th date with Mt. Sinai in New York. Bucky and I are more depressed every day; the day can't get here fast enough to suit us. Bucky heard from his sister Linda and her husband Jack tonight. As medical professionals, they were shocked to hear that nothing has been done to deal with the aneurysm yet -- in their dealings with children with cancer, an aneurysm was always dealt with immediately -- it is more life-threatening than the cancer. Both Bucky and I have had individual appointments with our family doctor the last two weeks, and each has apprised him of Kim's problem. He told Bucky today that we have some very, very serious decisions to make next week that will determine Kim's entire future. We are nervous wrecks that we are gambling with her life. Needless to say, we are doing everything we can to keep her blood pressure low and keep her comfortable. When I called to make the requested two-week appointment with the interventional radiologist in DE, Dr. Albani, I was told she was on vacation that week. I told the scheduler that we had an appointment with Dr. Olin in NYC on 7/11 and she told me to wait till Kim sees Dr. Olin before making an appointment with Dr. Albani. I also left two messages with Dr. Albani's office, asking if it is safe for Kim to take the 3-hour trip to NYC by car or if she should be transported by ambulance so she can be monitored on a very tense day, and as of today, 7/3, I have not gotten a response.
Every day Kim is more depressed as well. Today I woke her at 10:00 by phone; we picked her up and visited her cousin in Middletown; at 2:30 we were on our way to have lunch, and she asked to go home to sleep instead. She is exhausted. Kim brought her IPod with her for the ride to Middletown today. She had her ear buds in and with our radio on in the front seats, we could still hear her music blaring. When we stopped for gas, we asked her if she had the buds plugged in all the way because we could hear the music so loudly. She told us she can't hear out of her left ear so she needs her right ear to compensate for it. When she walks, she seems to be doing better than when she first left the hospital; however, she is off balance, so she needs the cane to catch her when she loses her balance. The delay in medical attention has Bucky and I on edge. We have no energy. We feel like doing absolutely nothing. We are listening to our bodies tell us to take it easy. The next couple of weeks will be very tense for us.
Through all of this, humor is still an important part of our lives. At Karen's today, we were able to joke about the fact that no one will argue with Kim (we're all trying to avoid raising her blood pressure), so she's able to get away with whatever she wants. She also said she can say, "Oh, I just had a stroke," and get sympathy whenever she wants. All in good humor. Oh, and the cane is great for reaching out and grabbing someone, particularly Karen's two boys, whose necks fit pretty well within the handle of the cane. The fact is, none of us wants to do anything that will make things worse. So we are keeping her as happy as we can.
Tomorrow is the 4th of July. Independence Day. Big Whoopie. We are going to celebrate like we always do, and that will keep us busy. We are bringing Kim over to our house to enjoy the day; she told me today she's not sure she wants to go to the Fireworks at Swift Park tomorrow night. I suspect she'll be too tired to go. I wish I had the power to do something to make this situation better, quicker, get my daughter back on her feet again. We feel very helpless and useless in a world where Mom and Dad are supposed to make everything right.
Every day Kim is more depressed as well. Today I woke her at 10:00 by phone; we picked her up and visited her cousin in Middletown; at 2:30 we were on our way to have lunch, and she asked to go home to sleep instead. She is exhausted. Kim brought her IPod with her for the ride to Middletown today. She had her ear buds in and with our radio on in the front seats, we could still hear her music blaring. When we stopped for gas, we asked her if she had the buds plugged in all the way because we could hear the music so loudly. She told us she can't hear out of her left ear so she needs her right ear to compensate for it. When she walks, she seems to be doing better than when she first left the hospital; however, she is off balance, so she needs the cane to catch her when she loses her balance. The delay in medical attention has Bucky and I on edge. We have no energy. We feel like doing absolutely nothing. We are listening to our bodies tell us to take it easy. The next couple of weeks will be very tense for us.
Through all of this, humor is still an important part of our lives. At Karen's today, we were able to joke about the fact that no one will argue with Kim (we're all trying to avoid raising her blood pressure), so she's able to get away with whatever she wants. She also said she can say, "Oh, I just had a stroke," and get sympathy whenever she wants. All in good humor. Oh, and the cane is great for reaching out and grabbing someone, particularly Karen's two boys, whose necks fit pretty well within the handle of the cane. The fact is, none of us wants to do anything that will make things worse. So we are keeping her as happy as we can.
Tomorrow is the 4th of July. Independence Day. Big Whoopie. We are going to celebrate like we always do, and that will keep us busy. We are bringing Kim over to our house to enjoy the day; she told me today she's not sure she wants to go to the Fireworks at Swift Park tomorrow night. I suspect she'll be too tired to go. I wish I had the power to do something to make this situation better, quicker, get my daughter back on her feet again. We feel very helpless and useless in a world where Mom and Dad are supposed to make everything right.
Wednesday, July 2, 2008
Back to the beginning
It all started, I believe on Monday night. Kim called me on the phone, very upset. Her ex-husband (divorced less than 3 months ago) had sent her an email in response to one from her, saying that to be brutally truthful, he didn't want to hear from her ever again. She was extremely hurt. Up till then they had been able to have civil conversations -- they had mutual friends and enjoyed mutual night spots for karaoke several nights a week. He and his girlfriend of several months (Kim and he had separated ten months before) had just gotten back from a trip to Las Vegas; until that time, he and Kim had frequent conversations, emails, and IMings back and forth. Kim was devestated and in tears when she called me, saying she never wanted to hear his name again. I told her with motherly sympathy that he had obviously moved on and she should do the same; her life was full of new beginnings and she had to start looking for them and put the past behind her. It never occurred to me that this event would make her blood pressure reach the point of boiling, but apparently it did.
The next morning I got a call around 10:00 from Kim's girlfriend Brandy -- "Don't want to alarm you, but Kim's been having trouble speaking and has tingling all down her left side -- what should I do?" I told her to get her to the hospital, and I'd meet them there.
It took me a half hour to do that, and when I got into the ER front desk, there in the queue was Kim sitting in a wheelchair, Brandy and their friend Meghan by her side. Kim was very upset, crying and asking me what had happened to her. She didn't call me "Mom"; she called me "Red", which is the color of my hair. I told her we were at the right place to find out. I asked what all had happened, and she told me, in her own brain-affected language, that she had a really bad headache the night before and didn't really sleep. Early Tuesday morning she got up and tried to take an Advil, but couldn't hold onto the bottle and the tablets spilled to the floor. She felt so bad she just went back to bed without taking anything. A while later she got up again, this time thinking maybe some Nyquil would make her feel better. Again, when she tried to hold the bottle, it fell from her hands and spilled on the floor. At that point she woke up Brandy, and the phone call happened. This tale was repeated several times over the day, from the sign-in desk, triage area, and her treatment room. Her blood pressure was 197 over 163. She couldn't remember my phone number, ANY numbers, any names. Brandy had become "Tires" (she worked for a tire distributor); I was "Red" for my hair color; my husband and Kim's Dad Bucky had become "Puppy", Her oldest brother TJ, a college professor about to earn his Ph.D, was now "Smart", his wife Gail was now "Accent" (she was raised in England and has a British accent), her sister Wendy, a run-away at 15 now reunited with our family was now "Found"; Cory, her local sister who seems to think she is always right, was now "Right"; her husband Brian, who is working his way up the banking business ladder and putting in long days, became "Work". Cory and Brian's sweet babies, Addie, 3, was now "Goldilocks", and Ben, 19 months, was "Little Red" (he has my red hair). Kim's youngest brother, Matt, who is currently distant from the family, had become "Lost". As Kim tried to remember anyone, she could only find a single descriptor for that person and could not find the name in her memory. It was bizarre. We found ourselves playing charades in the ER room, trying to figure out who she was talking about based on the adjectives she called them by. I wondered to myself if this was real -- it seemed almost like a BBC spoof. We actually laughed quite a bit over the entire scene.
As much as we laughed, we cried as well. When she tried to speak of Wendy, "Found", and Matthew, "Lost", she cried, I cried, Brandy cried. In her broken language, she saw my tears and told me "POTS, Red!" She told me Found loves me, Lost loves me, and they know I love them. She kept saying Lost made big mistakes. And she told me how he used to crawl in bed with her at night when he was little, because he was scared. He was very scared. At one point she told him he couldn't crawl in bed with her any more, and she found him asleep outside her bedroom door. Again, the tears fell. We could have washed the floor, there were so many. Again she looked at me and said "POTS, Red!" POTS? Hanging on the wall hear her bed in the ER, there was a red stop sign that reminded the staff to check the patient's ID bracelet before they administered any treatment. She now read it as POTS. Her brain had reversed the letters. Stop was now POTS. Stop crying, Mom.
No one at the ER seemed very concerned about her, though she did have on a heart monitor, blood pressure cuff, and a pulse oxygen clip. After we were there several hours, a doctor came in, then another, then another as the shifts changed. Each doctor did the standard neurological tests -- squeeze my hand as tight as you can, can you feel me tickle your foot?; try to keep me from pushing your hands/arms/legs back. Each of them asked the same questions about what had happened -- she constantly complained that her left side was "burning" -- she kept saying "burns, burns" whenever anyone or anything touched her left side. Otherwise, she couldn't feel anything on her left side, but could still move all her left-sided extremities. Intermittently she seemed to be able to speak in coherent sentences; then suddenly she would go back to single words, tears, and asking what happened to her. Kim has had migraines off and on for the past ten years or so; the preliminary belief was that she had had an unusually bad migraine, though she had no warning aura or other warning signs that one was coming.
My husband had been out to lunch with some fellow pensioners that day, and I left him a note telling him I thought Kim had had a stroke and he should come to the hospital as soon as he read the note. All the while at the hospital Kim kept asking, "Where's Puppy? He'll understand." Somehow her mind allowed her to remember that nearly a year ago her dad had been admitted to the stroke unit for what we thought was a stroke, and she knew he would know what she was going through, since she couldn't explain it herself. Finally around 2 p.m. Bucky arrived and she cried as he hugged her, and she kept saying, "My Puppy, my Puppy".
Somewhere in the course of the day a CAT scan was ordered and it was done quickly. An MRI was ordered and this showed something going on on the right side of her brain. They were going to admit her -- they thought she had had a stroke. A young woman in good health with no warning. Her blood pressure had come down to reasonable levels in the ER and no other symptoms manifested.
Brandy stayed with her till she was assigned a room on the fifth floor -- general medical issues floor. The next day another MRI on the carotid artery area showed the source of the stroke. She had a congenital defect in her carotid artery that had allowed a blood clot to escape to her brain when her blood pressure spiked.
I called all the kids and let them know what had happened. Those that could came right to town. Those that couldn't stayed in close contact on the phone and email.
Once she was in her hospital room, another MRI was ordered of the carotid artery area in her neck. The MRI confirmed that she had, indeed, suffered a stroke. With that, she was moved to the sixth floor, the Stroke Unit. An interventional radiologist came in to tell us that they wanted to do an angiogram on Kim to look closely at the carotid artery that caused her stroke. It was scheduled for the next morning.
We all went with Kim to the radiology floor and stayed with her till they took her back for the angiogram. It took about an hour and a half for the procedure. The two interventional radiologists came out afterwards and told us the news. She had a congenital disease called Fibro Muscular Dysplasia. The carotid artery (and even more frequently, the renal artery, but this was not the case for Kim) has a malformation that looks like little pearls in a section of the artery. The little pearls become pools for blood clots to accumulate in and when blood pressure elevates, it's possible for a blood clot to break loose and travel to the brain and cause stroke. That is what happened to Kim. When we got copies of the angiogram and CAT scan, we actually looked at them at our house. Kim's damaged area looks like little shrimp or curliques, not pearls. There are many of them on either side of the carotid. The worst part is, there is a very large aneurysm connected to the little curliques that is cause for great alarm.
The next morning I got a call around 10:00 from Kim's girlfriend Brandy -- "Don't want to alarm you, but Kim's been having trouble speaking and has tingling all down her left side -- what should I do?" I told her to get her to the hospital, and I'd meet them there.
It took me a half hour to do that, and when I got into the ER front desk, there in the queue was Kim sitting in a wheelchair, Brandy and their friend Meghan by her side. Kim was very upset, crying and asking me what had happened to her. She didn't call me "Mom"; she called me "Red", which is the color of my hair. I told her we were at the right place to find out. I asked what all had happened, and she told me, in her own brain-affected language, that she had a really bad headache the night before and didn't really sleep. Early Tuesday morning she got up and tried to take an Advil, but couldn't hold onto the bottle and the tablets spilled to the floor. She felt so bad she just went back to bed without taking anything. A while later she got up again, this time thinking maybe some Nyquil would make her feel better. Again, when she tried to hold the bottle, it fell from her hands and spilled on the floor. At that point she woke up Brandy, and the phone call happened. This tale was repeated several times over the day, from the sign-in desk, triage area, and her treatment room. Her blood pressure was 197 over 163. She couldn't remember my phone number, ANY numbers, any names. Brandy had become "Tires" (she worked for a tire distributor); I was "Red" for my hair color; my husband and Kim's Dad Bucky had become "Puppy", Her oldest brother TJ, a college professor about to earn his Ph.D, was now "Smart", his wife Gail was now "Accent" (she was raised in England and has a British accent), her sister Wendy, a run-away at 15 now reunited with our family was now "Found"; Cory, her local sister who seems to think she is always right, was now "Right"; her husband Brian, who is working his way up the banking business ladder and putting in long days, became "Work". Cory and Brian's sweet babies, Addie, 3, was now "Goldilocks", and Ben, 19 months, was "Little Red" (he has my red hair). Kim's youngest brother, Matt, who is currently distant from the family, had become "Lost". As Kim tried to remember anyone, she could only find a single descriptor for that person and could not find the name in her memory. It was bizarre. We found ourselves playing charades in the ER room, trying to figure out who she was talking about based on the adjectives she called them by. I wondered to myself if this was real -- it seemed almost like a BBC spoof. We actually laughed quite a bit over the entire scene.
As much as we laughed, we cried as well. When she tried to speak of Wendy, "Found", and Matthew, "Lost", she cried, I cried, Brandy cried. In her broken language, she saw my tears and told me "POTS, Red!" She told me Found loves me, Lost loves me, and they know I love them. She kept saying Lost made big mistakes. And she told me how he used to crawl in bed with her at night when he was little, because he was scared. He was very scared. At one point she told him he couldn't crawl in bed with her any more, and she found him asleep outside her bedroom door. Again, the tears fell. We could have washed the floor, there were so many. Again she looked at me and said "POTS, Red!" POTS? Hanging on the wall hear her bed in the ER, there was a red stop sign that reminded the staff to check the patient's ID bracelet before they administered any treatment. She now read it as POTS. Her brain had reversed the letters. Stop was now POTS. Stop crying, Mom.
No one at the ER seemed very concerned about her, though she did have on a heart monitor, blood pressure cuff, and a pulse oxygen clip. After we were there several hours, a doctor came in, then another, then another as the shifts changed. Each doctor did the standard neurological tests -- squeeze my hand as tight as you can, can you feel me tickle your foot?; try to keep me from pushing your hands/arms/legs back. Each of them asked the same questions about what had happened -- she constantly complained that her left side was "burning" -- she kept saying "burns, burns" whenever anyone or anything touched her left side. Otherwise, she couldn't feel anything on her left side, but could still move all her left-sided extremities. Intermittently she seemed to be able to speak in coherent sentences; then suddenly she would go back to single words, tears, and asking what happened to her. Kim has had migraines off and on for the past ten years or so; the preliminary belief was that she had had an unusually bad migraine, though she had no warning aura or other warning signs that one was coming.
My husband had been out to lunch with some fellow pensioners that day, and I left him a note telling him I thought Kim had had a stroke and he should come to the hospital as soon as he read the note. All the while at the hospital Kim kept asking, "Where's Puppy? He'll understand." Somehow her mind allowed her to remember that nearly a year ago her dad had been admitted to the stroke unit for what we thought was a stroke, and she knew he would know what she was going through, since she couldn't explain it herself. Finally around 2 p.m. Bucky arrived and she cried as he hugged her, and she kept saying, "My Puppy, my Puppy".
Somewhere in the course of the day a CAT scan was ordered and it was done quickly. An MRI was ordered and this showed something going on on the right side of her brain. They were going to admit her -- they thought she had had a stroke. A young woman in good health with no warning. Her blood pressure had come down to reasonable levels in the ER and no other symptoms manifested.
Brandy stayed with her till she was assigned a room on the fifth floor -- general medical issues floor. The next day another MRI on the carotid artery area showed the source of the stroke. She had a congenital defect in her carotid artery that had allowed a blood clot to escape to her brain when her blood pressure spiked.
I called all the kids and let them know what had happened. Those that could came right to town. Those that couldn't stayed in close contact on the phone and email.
Once she was in her hospital room, another MRI was ordered of the carotid artery area in her neck. The MRI confirmed that she had, indeed, suffered a stroke. With that, she was moved to the sixth floor, the Stroke Unit. An interventional radiologist came in to tell us that they wanted to do an angiogram on Kim to look closely at the carotid artery that caused her stroke. It was scheduled for the next morning.
We all went with Kim to the radiology floor and stayed with her till they took her back for the angiogram. It took about an hour and a half for the procedure. The two interventional radiologists came out afterwards and told us the news. She had a congenital disease called Fibro Muscular Dysplasia. The carotid artery (and even more frequently, the renal artery, but this was not the case for Kim) has a malformation that looks like little pearls in a section of the artery. The little pearls become pools for blood clots to accumulate in and when blood pressure elevates, it's possible for a blood clot to break loose and travel to the brain and cause stroke. That is what happened to Kim. When we got copies of the angiogram and CAT scan, we actually looked at them at our house. Kim's damaged area looks like little shrimp or curliques, not pearls. There are many of them on either side of the carotid. The worst part is, there is a very large aneurysm connected to the little curliques that is cause for great alarm.
In the not-so-beginning
Last night was a particularly hard night for me. Bucky and I watched the movie "Bobby" and we realized that 1968 and 2008 are eerily similar in the political arena. Reliving RFK's assassination and the wounding of so many people during it, it brought to mind the shortness of life and how, in an instant, someone may be gone from our lives.
This, of course, lends itself to the situation with our Kimberly, 24 years old, who about two weeks ago was diagnosed with fibro muscular dysplasia (FMD) after suffering a stroke that left her left side impaired, short term memory damaged, hearing and other sensory deficiencies, and of course, an enormous aneurysm connected to the damaged area of her carotid artery, behind the right mandible, in a very unfriendly place for invasive surgery. My otherwise-healthy-till-two-weeks ago daughter now sports a cane to give support to her weakened left side and can't remember a decision we helped her make an hour before. Her sense of humor is off, and she can't understand sarcasm, to name a few signs of her distress.
I have been worried beyond belief about her. She left the hospital the Friday after her Tuesday admission, with only two aspirin a day to thin her blood as her treatment, and she was sent home to allow her swollen brain to heal. We are very fortunate to have in our corner our daughter Cory, a social worker, who is an advocate for people with disabilities. She had just started a new job at the AI duPont Hospital for Children when Kim was stricken, and, blessedly, AI duPont is an extremely family-friendly hospital and they told Cory to do whatever she had to do -- family comes first. Thanks to the Internet, Cory found the Fibro Muscular Dysplasia Society of America in the blink of an eye and contacted a member and former stroke victim. As luck would have it, the FMDSA was having its annual meeting in Ohio that weekend. Through conversation and recommendations, we were put in touch with a Dr. Jeffrey Olin at Mt. Sinai Hospital in NYC, who is the head of the FMDSA. By the end of that first weekend, the FMDSA knew all about Kim and the extremely rare form of FMDSA she has -- that which has an enormous aneurysm attached. We are sure they spent a great deal of time discussing Kim's condition and when Cory called to make an appointment for Kim to see Dr. Olin, it appeared that everyone was already aware of her case.
So, here we sit, fifteen days after the stroke, waiting for the days to pass till we can take Kim to NYC to see Dr. Olin on July 11th. She will have a carotid sonogram first at 10 a.m., followed by an 11 a.m. with Dr. Olin; then we have several hours to wait till her 4:00 with Dr. Olin's neurologist, Dr. Patel.
Sitting on my kitchen counter these past days are three CDs -- one, of Kim's CAT scan, and two containing her angiogram records. I can't believe I have in my possession pictures of my daughter's brain and the deformity that is her right carotid artery. Hers is unusual for two reasons:
1. The damaged area is twice as long as "normal" FMD areas.
2. Along with the curliqued abnormalities in the area, an aneurysm sits, looking like a giant amidst an ant colony.
Her angiogram (a catheter is inserted into her groin and dye is injected which travels through the arteries and traces blood's path through them) traces the FMD, with faint images of her skull and spine as reference points for the uneducated. Oh, we know EXACTLY where this deformity sits along her carotid, as we can see plainly her jaw and know that the FMD is behind her right mandible.
So, again, we wait to see what may be the next step. The two interventional radiologists at Christiana Care, where she was first admitted, told us that the area is longer than most, and farther up into the skull than most. This deformed part of the carotid also is much less stable because of all the little curliques that run off of it, so where they normally would put in a single stent, they thought they would have to put in two or "come up with something" that will deal with the unusual length of the area, then put in a tube of some material that would seal off the curliques and the aneurysm to stop blood flow to all these little diversions.
Hers is much more difficult because of the length and the location behind her mandible. If invasive surgery is necessary, they will have to dislocate her jaw to access the artery.
At the time of discharge, she still had a clot in her brain that had not dissipated. Hopefully that will be thinned and gone by the time we visit NYC.
I never thought I'd have conversations with one of my children that involve questions like "What if I die?" I had just that question posed to me by Kim a few days ago, and my response was, "What if you live?" Somehow we are supposed to get through the next ten days calmly and without increasing blood pressures, but I know that last night I -- not the patient -- had blood pressure way higher than I'm supposed to have. The realization of what the possibilities are overwhelm at times, and last night was the worst for me.
What is our best case scenario? The doctors do whatever procedure they decide on as soon as possible after the July 11th visits; Kim does well, her brain heals over the course of the next twelve months, and there will be little or no damage long-term.
What may happen? The stenting procedure could dislodge a clot in the aneurysm and cause another stroke, doing a little or a lot of stroke-like damage to her brain. She could have a slight amount of additional impairment, or severe impairment that will completely alter her life as she knows it.
The third possibility I cannot even write. But it goes with Kim's question three paragraphs above. I cannot bear to think of it, and I'm angry with myself that the thought creeps into my mind from time to time. Damn it, she's only 24 years old.
Our strong family network has been evidenced by all the calls and emails from the kids who live away from Delaware. TJ came down from Providence and spent a few days with us when Kim's angiogram was scheduled; he sat with us in the waiting room as we awaited the results of the test. He is going to meet us in NYC on the 11th to see what comes about from the visit to Olin and Patel, and will be wherever we are for whatever procedure is decided upon. Jeremy in New Hampshire will be with us, too, for the procedure, and Wendy in Reno, NV, is trying to figure out how she can get back home to support Kim. Matthew in Phoenix has been in touch and told me he was scared to death for her. He remembered a book he had read about DMSO, a solvent that health and natural products stores sell, and its use in aneurysm treatment. I found articles on it on the web, and will, in fact, ask Dr. Olin about its use. The case studies I read were interesting, and I'm anxious to see if the Onyx Embolism Treatment Method using DMSO as the solvent is a viable one for Kim's case.
I suppose I've fit a lot of information into my first edition of this blog. I'm sure there will be other things that will come to mind which I will add in an edit of this first effort. I intend to chronicle the coming days so that when she is better, Kim can read for herself her story, at least from Mom's perspective. Perhaps it will help someone else with FMD some day.
With all the positive things happening during this mess, i.e., finding the FMDSA, finding out that its annual meeting was the weekend after Kim's stroke, getting in touch with Drs. Olin and Patel, we are hopeful that we have assembled the best team to help us with Kim's disease. Tomorrow I will focus on my observations of Kim's stroke and deficiencies she has discovered in herself since her stroke.
This, of course, lends itself to the situation with our Kimberly, 24 years old, who about two weeks ago was diagnosed with fibro muscular dysplasia (FMD) after suffering a stroke that left her left side impaired, short term memory damaged, hearing and other sensory deficiencies, and of course, an enormous aneurysm connected to the damaged area of her carotid artery, behind the right mandible, in a very unfriendly place for invasive surgery. My otherwise-healthy-till-two-weeks ago daughter now sports a cane to give support to her weakened left side and can't remember a decision we helped her make an hour before. Her sense of humor is off, and she can't understand sarcasm, to name a few signs of her distress.
I have been worried beyond belief about her. She left the hospital the Friday after her Tuesday admission, with only two aspirin a day to thin her blood as her treatment, and she was sent home to allow her swollen brain to heal. We are very fortunate to have in our corner our daughter Cory, a social worker, who is an advocate for people with disabilities. She had just started a new job at the AI duPont Hospital for Children when Kim was stricken, and, blessedly, AI duPont is an extremely family-friendly hospital and they told Cory to do whatever she had to do -- family comes first. Thanks to the Internet, Cory found the Fibro Muscular Dysplasia Society of America in the blink of an eye and contacted a member and former stroke victim. As luck would have it, the FMDSA was having its annual meeting in Ohio that weekend. Through conversation and recommendations, we were put in touch with a Dr. Jeffrey Olin at Mt. Sinai Hospital in NYC, who is the head of the FMDSA. By the end of that first weekend, the FMDSA knew all about Kim and the extremely rare form of FMDSA she has -- that which has an enormous aneurysm attached. We are sure they spent a great deal of time discussing Kim's condition and when Cory called to make an appointment for Kim to see Dr. Olin, it appeared that everyone was already aware of her case.
So, here we sit, fifteen days after the stroke, waiting for the days to pass till we can take Kim to NYC to see Dr. Olin on July 11th. She will have a carotid sonogram first at 10 a.m., followed by an 11 a.m. with Dr. Olin; then we have several hours to wait till her 4:00 with Dr. Olin's neurologist, Dr. Patel.
Sitting on my kitchen counter these past days are three CDs -- one, of Kim's CAT scan, and two containing her angiogram records. I can't believe I have in my possession pictures of my daughter's brain and the deformity that is her right carotid artery. Hers is unusual for two reasons:
1. The damaged area is twice as long as "normal" FMD areas.
2. Along with the curliqued abnormalities in the area, an aneurysm sits, looking like a giant amidst an ant colony.
Her angiogram (a catheter is inserted into her groin and dye is injected which travels through the arteries and traces blood's path through them) traces the FMD, with faint images of her skull and spine as reference points for the uneducated. Oh, we know EXACTLY where this deformity sits along her carotid, as we can see plainly her jaw and know that the FMD is behind her right mandible.
So, again, we wait to see what may be the next step. The two interventional radiologists at Christiana Care, where she was first admitted, told us that the area is longer than most, and farther up into the skull than most. This deformed part of the carotid also is much less stable because of all the little curliques that run off of it, so where they normally would put in a single stent, they thought they would have to put in two or "come up with something" that will deal with the unusual length of the area, then put in a tube of some material that would seal off the curliques and the aneurysm to stop blood flow to all these little diversions.
Hers is much more difficult because of the length and the location behind her mandible. If invasive surgery is necessary, they will have to dislocate her jaw to access the artery.
At the time of discharge, she still had a clot in her brain that had not dissipated. Hopefully that will be thinned and gone by the time we visit NYC.
I never thought I'd have conversations with one of my children that involve questions like "What if I die?" I had just that question posed to me by Kim a few days ago, and my response was, "What if you live?" Somehow we are supposed to get through the next ten days calmly and without increasing blood pressures, but I know that last night I -- not the patient -- had blood pressure way higher than I'm supposed to have. The realization of what the possibilities are overwhelm at times, and last night was the worst for me.
What is our best case scenario? The doctors do whatever procedure they decide on as soon as possible after the July 11th visits; Kim does well, her brain heals over the course of the next twelve months, and there will be little or no damage long-term.
What may happen? The stenting procedure could dislodge a clot in the aneurysm and cause another stroke, doing a little or a lot of stroke-like damage to her brain. She could have a slight amount of additional impairment, or severe impairment that will completely alter her life as she knows it.
The third possibility I cannot even write. But it goes with Kim's question three paragraphs above. I cannot bear to think of it, and I'm angry with myself that the thought creeps into my mind from time to time. Damn it, she's only 24 years old.
Our strong family network has been evidenced by all the calls and emails from the kids who live away from Delaware. TJ came down from Providence and spent a few days with us when Kim's angiogram was scheduled; he sat with us in the waiting room as we awaited the results of the test. He is going to meet us in NYC on the 11th to see what comes about from the visit to Olin and Patel, and will be wherever we are for whatever procedure is decided upon. Jeremy in New Hampshire will be with us, too, for the procedure, and Wendy in Reno, NV, is trying to figure out how she can get back home to support Kim. Matthew in Phoenix has been in touch and told me he was scared to death for her. He remembered a book he had read about DMSO, a solvent that health and natural products stores sell, and its use in aneurysm treatment. I found articles on it on the web, and will, in fact, ask Dr. Olin about its use. The case studies I read were interesting, and I'm anxious to see if the Onyx Embolism Treatment Method using DMSO as the solvent is a viable one for Kim's case.
I suppose I've fit a lot of information into my first edition of this blog. I'm sure there will be other things that will come to mind which I will add in an edit of this first effort. I intend to chronicle the coming days so that when she is better, Kim can read for herself her story, at least from Mom's perspective. Perhaps it will help someone else with FMD some day.
With all the positive things happening during this mess, i.e., finding the FMDSA, finding out that its annual meeting was the weekend after Kim's stroke, getting in touch with Drs. Olin and Patel, we are hopeful that we have assembled the best team to help us with Kim's disease. Tomorrow I will focus on my observations of Kim's stroke and deficiencies she has discovered in herself since her stroke.
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