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.
Thursday, July 3, 2008
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.
Subscribe to:
Posts (Atom)