Journal

Journal entry by Judy Kawashiri

In order to help Eddie's cognitive skills, the neurosurgeon had suggested to implant a Shunt, which is a device that regulates the amount of cerebrospinal fluid. To determine whether Eddie is a good candidate to have a Shunt implanted, he had to go through a lumbar puncture procedure. After answering some questions by the nurse, they had concluded that Eddie was not a good candidate for the Shunt.

The neurologist had prescribed Donepezil, a medication to treat Alzheimer's disease. Based on my research, I feel it's a bandage solution that only has 50/50 positive reviews, yet it comes with host of side effects.

One by one, we had weaned Eddie's medications off except for the ones for his blood pressure. I had switched all his vitamins to food base instead of the synthetic forms. Together with my boys, we've been monitoring his diet, and exercising his brain and body. He is able to walk around three blocks without using the cane. He enjoys doing jigsaw puzzles and other games on the iPad. His IVC filter (to retrieve any blood clots from his legs) were removed. He enjoys his 20min-a-day sunbathing treat. As of last week, He had graduated from the outpatient therapy program which lasted four months. We are now looking into other means of therapy as well as adult daycare or caregiving service.

The results from the QEEG brain mapping test indicated that Eddie's case is very typical brain of a poststroke patient. Neurofeedback treatment could last from 40 to 70 sessions depending on his progress. Neurofeedback is a process by which a therapist attempts to regulate brain waves. This is done by tracking the brain activity on the computer and then repeatedly sending the information back to the brain via computer imagery or an electrical signal. I haven't quite decided to sign up for this treatment, yet I'm more inclined to do so based on numerous sources. I also looked into other alternative treatments such as hyperbaric oxygen chamber, EECP (Enhance External Counterpulsation), Ozone therapy and Chelation Therapy. As with any alternative treatment, insurance will not pay for such treatment.

Eddie's increasing level of fatigue has been my concern. It's not uncommon for him to sleep ten hours at night and take two to three naps during the day. I had addressed the issue to his primary care doctor and hematologist to test his iron level and vitamin B 12 test. All results came out to be in the normal range. His extreme fatigue continues to be a mystery. I intend to further probe into this issue.

If any of you have any input, advice or experience as to what we are going through, please let me know. Thank you for your prayers and support!
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Journal entry by Judy Kawashiri

I feel as though I had traded my husband (without my children's consent) for a handicapped six years old who likes to play poker and chess, and is a backseat driver who likes to argue every now and then.

Physically, he has made big progress considering he had suffered two major strokes within two weeks period. I'm thankful for the doctors and the hospital staff for saving Eddie's life. And I'm aware that his situation could be a lot worse. I understand it's never a continuous progress, but the recovery process has been frustrating.

During the 30 min drive enroute to the hospital whenever we hit the red light, I'd ask Eddie the question, "What is the date today?". He struggles and can't get it right without looking at his clipboard. We practice few times and he finally gets it, only to lose it 5 minutes later. I'm told that somehow getting the date right is one of the hardest thing for stroke patients to master. 

For his morning and night routine, we prepared a list of things to do with a post-it marker just so that he can track himself. Yet he still struggles to follow. He gets confused and sometimes tries to put toothpaste on the comb, or he would put hand soap on his toothbrush. None of which he use to do few months back. 

The good news is that on Monday, we were told by the hematologist that despite of the fact that the minor clots still remain in his calf and arm, Eddie could be off of Coumadin (blood thinner medication) and that the IVC filter could be removed. Being on Coumadin was too restrictive. I couldn't give him many healthy foods since they'll affect the INR number. I could now upgrade his nutritional supplements and look into other treatments aside from physical, occupational and speech therapies.

I decided to get a QEEG test (brain map) done on Eddie's brain.  The results would be out in few weeks. 

Eddie is scheduled to have a lumbar puncture done next week to see if implanting a Shunt could help him. We also took care of his gingivitis issue. For a while, I had to endure sleeping with him with his dragon breath, snoring and frequent trips to the bathroom at night. Thank goodness those issues are gone!

My boys have been very helpful. We've been taking turns caring for Eddie, going to doctor visits and therapy sessions, and doing household chores. Eddie participates in drying the dishes, folding the laundry, sweeping the yard and doing gardening. It's been such a blessing to have Eddie's sister helping us once a week for half a day.

Thank you so much for all of your support and prayers!

 

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Journal entry by Judy Kawashiri

We are hanging in there, adjusting to the outpatient rehab program at the Mission Hospital and consulting with eleven different doctors and getting lab works done. We were commuting to Mission Viejo almost on a daily basis. This month, the rehab coordinator was able to consolidate speech, occupational and physical therapies one after another for twice a week. 

It's been quite challenging. One morning, we had a three hour appointment for Ultra Sound images for Eddie's legs and right arm. I got up late at quarter after seven, scrambling to get myself and Eddie ready. I managed with the help of Evan to leave within thirty minutes, which included breakfast as well. Three of us hopped in the car and miraculously made it on time for the appointment. That was a high five moment, and later we did a group hug. The following day, Evan was complaining during dinner that he didn't see the point in accompanying to all these appointments. He mentioned in front of Eddie (thinking that he wouldn't understand) that it's useless to put in all the effort when he's in the state that he is in, and that the medical industry is just trying to benefit from his case. Evan referred Eddie as a "PXXXXX head". Eddie had surprised us by yelling, "What did you call me?!" and started charging after Evan. Luckily, Ryan and I were there to prevent from the situation escalating to domestic violence. Of course, Evan was remorseful, and we had a long talk two days after we had a chance to chill and contemplate.

Physically, Eddie is getting stronger. However, He could really use a boost with his cognition. We feel as though he is regressing. Eddie has Aphasia, which means he has difficulties in the way he expresses or comprehends ideas through words. His processing speed is s-l-o-w and he often gets distracted or confused. One therapist told me it's like ADD, only ten times worse. He still struggles with getting basic personal information correct, i.e., address, name of family members, telephone numbers, etc.

During the last appointment with the Neurosurgeon, we discussed having the Shunt implanted. There's no more bleeding in Eddie's brain, but he now has excessive brain fluid which is causing swelling and reduced blood flow. I'm planning to wait until his blood clots are completely gone prior to doing the Lumbar Puncture, which is a test run to see if he would benefit from draining the excess brain fluid. The Neurologist is suggesting to be on Donepezil, a drug used for Dementia patients. I'm looking into the pros and cons and researching alternative solutions as well. Please let me know if anyone has any experience or knowledge in this area.

I'm still in search of a male psychologist for Evan. His depression/anxiety comes and goes. He tried a few, but it's a challenge to find a good fit who can accommodate our measly budget. I'm also having to find a doctor for Ryan's medical issues during the summer. Meanwhile, things in the house keep getting busted one by one. First, it was our leaking deck above the garage due to the rain fall back in spring. Then it was the microwave, toaster oven, dishwasher, my computer and now it's the locking device in Eddie's old minivan. I'm wondering if this is just a bad coincidence or could it be a curse!

Anyway, despite of all of our problems, we are still hopeful that we will overcome one day. We are taking it a day at a time. I know that many of you are thinking and praying for us, and that gives us hope. We truly appreciate all your support. 

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Journal entry by Judy Kawashiri

I am so grateful that I have two boys living with me. If I had to care for Eddie all by myself, I would go crazy. It's been stressful for all of us. We, including Laura, are adjusting to the "New Eddie (Dad)". I try to train my boys to care for their dad, but that in itself can be a challenge. We are coping one day at a time.

Eddie's short term memory is pretty bad. The other day we had hamburgers for take out. After he unwrapped the burger and ate it, he opened the ketchup packet and searched through the wrapping to look for his burger so he could spread the ketchup! He asked suspiciously with the ketchup packet in his hand, "Where's my burger?". We told him that he ate it, but he wouldn't believe us. 

At this stage, some things come easy for Eddie to learn. However, Eddie still struggles to answer simple personal questions, such as "Who are your children and what are their ages?". Yet, he was able to read a short article called, "Just Four Stalks Of Celery A Day Can Reduce High Blood Pressure And More". It's questionable as to how much of it was being comprehended, but he got the big picture. He was able to articulate 90% of the words.

I found an oversize 48 piece floor puzzle with the illustration of tropical fish. Eddie had put it all together by himself, which gave me the time to cook or do chores for 50 minutes or so. The other day, he and I had worked on a 100 piece puzzle together. 

Physically, Eddie continues to get stronger. He walked around the block with Evan. He no longer uses a cane inside the house. His navigation skills are getting better. However, every now and then he says he's going to the bathroom yet he heads out towards the front or back door. Obviously, he still requires 24/7 care. 

Eddie is much more willing to do the therapy sessions with people other than his immediate family. With us, he has the tendency to refuse to cooperate. With his boys, he could get verbally abusive. If anybody has some extra time to spend with Eddie doing simple games/exercise, conversing or taking him out for a walk, it'll be very helpful. Please call my cell (949-637-6128) if you'd like to visit.

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Journal entry by Judy Kawashiri

During the past two weeks, we have been taking turns getting sick with the cold/flu. Eddie was the last one to get it, but thank goodness he is now in the tail end of it.

Eddie has been going through four week of Home Health Care and he has another week to go until he is transitioned into outpatient therapy program. Starting in June, we will be commuting at least three times a week to the outpatient rehab facility in Mission Hospital, in Mission Viejo, where he will continue to be treated with various types of therapy.

Eddie has a full schedule as he is being seen by seven different doctors, having speech, occupational and physical therapy sessions multiple times a week and getting lab/imaging work done. Once the ultrasound images are taken on his extremities, the Hematologist could assess when the IVC filter (a metal device to retrieve blood clots) can be removed. Together with the results of the blood test, the doctors could figure out how long he needs to be on blood thinning medication.

I was told that patients who suffered brain injury often have difficulties in navigation and working with numbers. We live in a two bedroom one bathroom house (less than 1000 sq.ft.), but Eddie gets lost in trying to find the bathroom. On few occasions he would open the front or back door and try to get out, so we had to install an additional bolt and attach potty training bells for dogs on the door knobs. On early Mother's day morning, he got confused with the sofa for the toilet and had an accident. We ask him what day it is about a half a dozen times a day using the calendar, but he still struggles. 

Laura, Evan, Ryan and myself are somehow managing to care for Eddie. They're doing their best but they have their own issues as young adults and teen. I feel they are starting to show signs of distress. In addition to physical and speech therapy homework, we try to implement recreational activities such as card games, puzzles and arts and crafts. However, with immediate family members, he becomes non-compliant every now and then. It would be helpful if I could ask others to join and interact with him once in a while. Also, if anyone knows of a good (male) family therapist who could work on a sliding scale, please let me know. 

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Journal entry by Judy Kawashiri

Tomorrow will be two weeks since Eddie was discharged from the Acute Rehab Center in Mission Hospital. It's been quite challenging, especially for me since my sleep is interrupted due to Eddie's frequent urination issue. He goes every two hours (sometimes every hour) around the clock. I have to supervise every time he gets up since his balance and sense of direction is compromised. Eddie has been visited by therapists (physical, occupational and speech) and a nurse at home. We've been preoccupied with the doctor/lab visits and multiple therapy sessions during the weekdays. Home care service will continue for another ten days or so. Then he'll begin the outpatient rehab program that combines all three therapy sessions into two and a half hours. We'll be commuting to Mission Hospital Sports and Wellness Center several times a week. Managing the medication has been a learning experience for me. The dosage and type of drugs have been changing depending on so many factors. Physically, Eddie is getting stronger and slowly gaining back his weight. He had lost 15 pounds during the hospitalization. He's making improvements in his cognitive skills but he struggles with numbers, dates and retaining information in general. He has a hard time focusing, and is easily distracted. His stubborn old ways are coming back, unfortunately. He listens to his therapists, but towards his immediate family he could be defiant. Just to have him drink water could be a struggle as he puts it, "How can I drink water when I don't want to!" The speech therapist told us that patients who suffered brain injury would have difficulty in switching subjects. During dinner, Ryan had asked him to name three different types of religion. Eddie had successfully answered, "Judaism, Catholicism and Mormonism". Evan had changed the topic by asking him, "Do you know who Paris Hilton is?". Eddie replied, "Yeah, I know who she is". "Who is she?", Evan asked curiously. Eddie said with a grin, "She's a... devout... religious fanatic". We all burst in laughter. For the most part, I manage to put together simple meals. But with the hectic schedule and limited time for shopping, we've been buying prepared food from Trader Joe's more than ever. If you could recommend any brand or dish that are decent quality and cost effective, please let me know.

Journal entry by Judy Kawashiri

Eddie is looking forward to coming back home this Friday! I'm in a process of "baby-proofing" our house. He would require 24hr supervision. Physical therapist, occupational therapist and speech therapist will be visiting our house several times a week for the next few weeks. I really have no idea how challenging it's going to be, but together with my three adult/teen kids we'll somehow make it work. Eddie will need to wear pull-up diapers until he gets a better control of himself. If anyone could recommend a certain brand, it would be very helpful. We are still trying to gather people's selfies for Eddie's album just so he could remember people. A single shot of a current photo would be ideal. So far I've only got a handful... Please email me to cow.a.sherry@gmail.com. Thank you.

Journal entry by Judy Kawashiri

Eddie has gone through numerous evaluations from variety of therapists at the Acute Rehab Center in Mission Hospital. The anticipated discharge date is 4/26/19, Friday. Although Eddie will be able to perform everyday occupational activities, he will still need supervision on a 24hr basis. He will not be able to drive. MRI was taken yesterday to evaluate the need of the shunt implant. I'm leaning more towards going for the procedure. He is basically a three year old in a 64 year old body at this stage, unfortunately. He is showing improvements in his mobility, speech and writing, however, he gets very confused, distracted and can't retain/remember information. Eddie was asked by the speech therapist what Evan does. He learns that Evan is working towards being a DJ. He then was asked what I, Judy, does for living. Eddie replies that she's a DJ as well!

Journal entry by Judy Kawashiri

Eddie was admitted to the Acute Rehab Center (ARC) at the Mission Hospital in Mission ViejoViejo. The therapist over at Capistrano Beach Care Center told me that some of their patients couldn't be admitted into the ARC even after two months. So for Eddie to be able to do so within 3 weeks at the Skilled Nursing Facility, was impressive. According to the neurosurgeon, the CT scan showed that the blood in his brain was absorbed back into his system. However, there's excessive brain fluids in his ventricles. The doctor will order a MRI and determine whether he needs a shunt implanted. A shunt is an electronic device with a draining tube that drains the brain fluid into his intestine. The doctor thinks it'll help with his cognitive recovery. This afternoon I asked Eddie what are the names of our children. He struggled for couple minutes sighing here and there and finally managed to name them. When the nurse asked him how many girls and boys we have, he replied, "three boys" (Laura is a tomboy, but not a boy). While I stepped out Eddie got off his bed, stood in front of the empty closet and urinated. He will be sleeping in a bed that has a safety net. I hope he won't rip them apart. We will see how he does... Eddie is staying in room 104. The visiting hours are from 4PM till 8PM, Mon - Sat. Sunday visitation is preferred.

Journal entry by Judy Kawashiri

Truly, when it rains, it pours... I've been juggling with Eddie, my boys, my mother's medical issue, tax and mold problems. But we have a good news! Tomorrow, Eddie is scheduled to be discharged from Capistrano Beach Care Center and will be transferred back to Mission Hospital in the Acute Rehab Center. We are all looking forward to the next chapter in his recovery process. He will undergo three to five hours of physical, occupational, and speech therapy on a daily bases, training to be able to come back home. As to how long he's expected to be in ARC, I have no clue. We are hoping and praying that he'll make a speedy recovery.

Journal entry by Judy Kawashiri

Thank you everyone for your well wishes! If you would like to make a donation towards Eddie's medical bills, we are setting up a GoFundMe page that is linked under the Ways to Help tab. (Please be aware that tribute donations go to the Caringbridge website, not to us). 

Thank you all!
Eddie’s Story

Site created on March 17, 2019

UPDATE: Eddie is undergoing rehab at Capistrano Beach Care Center. Please email cow.a.sherry@gmail.com if you would like to visit.
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On February 21, 2019, Eddie suffered a hemorrhagic stroke caused by hypertension. It ruptured small arteries primarily on the left side of his brain. His coordination, speech, and temperature regulation may be compromised. Shortly after being admitted to the ER, small tubes were inserted in each side of his brain to drain the blood. Six days after the stroke, the left tube was removed. By this time, Eddie had developed pneumonia as well as multiple blood clots in his arms and legs. An IVC filter was implanted on the 28th to capture blood clots traveling from his legs. At this point, we were told by the doctor that Eddie’s life was no longer in danger. On day 10 in the ICU, Eddie was finally extubated and started uttering some words in a raspy voice. The following day, the doctor removed the right tube from his brain. Eddie was able to say few sentences and brushed his teeth with his left hand with assistance. By the end of the day, however, his responsiveness was weak. It turned out that there was more bleeding that took place. Essentially, he had suffered another stroke. Eddie was trembling, non-communicative and running a fever for a couple of days. However, two days of EEG records and numerous tests showed there were no signs of seizure nor infections. After sixteen days in the ICU, Eddie had finally graduated to the PCSU (Progressive Care Stroke Unit). By this time, his pneumonia had gotten better, and he was able to move his left limbs slightly and nod. Eddie was able to recognize his wife, form short sentences, and move his left limbs. But for the most part, he was very drowsy during the day and more alert during night. After about a week in the PCSU, Eddie was able to sit on a wheelchair and his appetite had increased. He has shown many signs of recovery, including humming to his favorite songs. However, there is still a long way to go.  In March 18th, Eddie will be given a higher dose of blood thinner through his IV to prevent the blood clots in his arms from traveling to his lungs. It is a risky procedure since it could result in more bleeding in his brain. If all goes well, Eddie will be monitored for few more days in the PCSU, then be transferred into a Skilled Nursing Facility, where he’ll be receiving more rehab services. It’s been a tumultuous journey so far and yet this is only the beginning. We have a long way towards recovery. We are truly blessed to receive so much support. We kindly ask that you would continue to keep Eddie in your thoughts and prayers. If it’s not too much to ask, we would love to receive your close-up photos of you/ your family so we could compile an album or poser for Eddie to look at. Please email to: cow.a.sherry@gmail.com (mailto:cow.a.sherry@gmail.com). Thank you in advance.

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