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.
No comments:
Post a Comment