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Joel

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About Joel

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  1. Thanks so much. fortunately she did not need a shunt. her ICP was fine unless she was flat (for an mri or cut) and bit would shoot up. apparently during the resection of the AVM and clipping of the aneurysm a clot formed in her superior sagittal sinus. they open a channel by performing a thrombectomy via her thigh. (sounds crazy). and her pressures went to normal. I guess she is confabulating rather than hallucinating but I'm not sure if that is better or worse. I am documenting everything via a journal and photos and short video clips. She is getting better so it is easy to be patient and even the occasional bad day is ok now. before I would suffer every up and down.
  2. Thanks Sharon. So far I have exhibited much more patience than I knew I had in me. And you are so right about celebrating progress. I am very grateful for the skill and dedication of the medical and therapy people treating her and guiding me. I am doing well although for a while I could not sleep more than 4 hours a night. I am up to 6 hours now. Joel
  3. Thanks for responding, this has been miracle week. She took some steps today. She was holding on to parallel bars and took 10 small steps. Then sat back in the wheelchair. The therapists pulled her back and she did it twice more. She wants to walk so badly. What i I find hard to deal with is when she forgets where she is and thinks we are in a hotel and leaving the next morning. She gets anxious about whether her suitcases are packed and she thinks she can walk and drive. I gently remind her of the situation and she says, “oh, right” and 5 minutes later goes to the same thing. She also tells people things that are completely made up. And she sometimes thinks she is taking off a bracelet or a ring. She is doing this less often so I hope it is just some brain activity that is part of healing. Doctors tell me how well she is doing and for now are not bothered by it, so I just try to ignore it. As I said, she has made huge progress this past week. I know she will have some bad days but I cannot wait to see her tomorrow morning and see if she will take more steps.
  4. My wife Fran, a 68 year old woman with hypertension and diabetes and I live outside of Boston. Our youngest son and his family live North of LA in the valley. September 3, 2017 Fran and I were at LAX waiting to board a flight home when Fran started to feel sick, started vomiting, and passed out. I yelled to call 911 and the LA Fire Department paramedics appeared within a few minutes. They checked her heart, took a quick history and intubated her in literally a few minutes and got us all into an ambulance. The paramedics realized it was a stroke and took us to the UCLA medical center. After a quick head CT they had her into the neuro ICU. I was of course frantic, called my son but only told him that his mom was in the ER and about the time he showed up a doctor came to talk to us and bring us to Fran’s bed. She had an SAH with severe bleeding In her right occipital area. This caused hydrocephalus and they administered drugs and a drain to release the pressure. The next day, after a number of studies we learned she had an AVM which had caused an aneurysm which ruptured and caused the SAH. They gave us no prognosis but scheduled a craniotomy the next day to resect the AVM and clip the aneurysm. Long story short, Fran was in a coma for a few weeks then began to wake, but was extremely tired and not at all alert. A thrombectomy was done to remove a clot in her superior sagittal sinus. Along the way another drain was put in and a trach and g-tube were placed. Over the first month she finally began to wake and went from full respiratory support to pressure support to breathing on her own. After a month she was transferred to Barlow respiratory hospital in Valley Presbyterian Hospital to begin weaning her off the trach. All this time I had no firm prognosis although the team at UCLA is amazing and were completely open about everything and patiently explained everything to me, showed me the imaging, and explained how healing could progress. At Barlow they inserted a Passey Muir valve in the trach and for the first time in a month I heard my wife’s voice again. She was also moving her arms and legs although she could not do much. After the joy of hearing her voice and realizing she recognized me, I also was dismayed to learn she was not making much sense. She was very confused. Her medical condition stabilized and her trach was capped off over the next three weeks. And 28 days after Barlow she transferred to sub-acute care at Topanga Terrace rehab. The respiratory team at Barlow was very good, but they were involved in removing the trach, not in stroke rehab. Topanga began rehab so about 2 months after the stroke she finally was assessed and began PT, OT and language therapy. She was decanulated and stepped down to skilled nursing. Fast forwrd to today, 3 months after the stroke. Her recovery is going well. This past Wednesday she ate her first meal and has been loving to eat for the past 3 days. Her long term memory seems fine although her short term memory is only beginning to function. She has not walked but can sit up straight in a wheelchair and is standing in therapy, she can feed herself and can write her name and simple words. I have every reason to believe she will be able to walk, albeit she may need a walker or cane. And I think her awareness of time and place is much improved. I have a million questions about some of the things she is doing but I will take the time to read the forum entries first to see if my questions are already answered. Fortunately she got to a great unit quickly and has received excellent care. While she has suffered and is suffering still. I am so lucky to be able to help her and advocate for her every single day. I have met a number of people with much sadder stories than ours and I don’t know how they find the strength. I am not even sure how I found the strength. But watching my wife eat again and laugh again has been so wonderful. Hopefully she will get much better, but even if not, this is enough. As as you know measuring progress goes from hours to days to weeks to months. And not knowing the future and seeing little day to day progress Is a difficult hurdle. Many people have helped me get over that hurdle. If I can answer any questions I would be happy to do so.