Yvonne's Road to Recovery

The weekend after Thanksgiving 2021, my wife, Yvonne, began acting abnormally. At first, I thought she was having some sort of mental breakdown, although I didn't know why. I assumed it may have been frustration with her constant battle with eczema, but even that didn't make much sense. We had just returned from two trips--Disneyland, with our three girls during fall break in October, and San Francisco for our 10th wedding anniversary. In all honesty, life was going really good for us.

On "Black Friday" 2021, we took our (obligatory) family photos for our annual Christmas cards. Yvonne planned it every year. She chose where we were taking the pictures and what we would be dressing in. The girls and I always went with it. Little did we know that these would be the last pictures with Yvonne before our lives would drastically change.

The following day, she started telling me, "I feel like everything is deja vu." I asked what she meant, but she just repeated, "I don't know; it just feels like I'm experiencing constant deja vu." I didn't think much of it, but throughout the day, she kept mentioning how "weird" she felt. That day, we carried on our Christmas decorating. I got new lights from Amazon that could be controlled by a mobile app and create different light patterns. Yvonne normally disliked me buying useless things, but Christmas was her favorite holiday, so she actually liked this useless thing even though it was far more expensive than regular lights. She kept mentioning how cool it was.

I had to go to church early the next morning, so I went to sleep at around my usual time while Yvonne stayed up longer, which wasn't unusual. However, when I woke up at around 3am, she was still up. This was unusual. So I asked her if she slept at all, and she said that she couldn't fall asleep. In fact, she hadn't slept since Friday. I was shocked. I told her I was going to church and I'd be back in about an hour so she should go to sleep. She laid down and it seemed like she fell asleep before I left. When I came home, I was shocked to find she didn't fall asleep.

I expected that she would be extremely tired, which she said she was, but she was able to get the girls ready for church. After church, my daughters told me that mommy was crying during Mass. So I asked Yvonne if she was okay, and she said that she was just feeling really emotional and didn't know why. On the car ride home, she suddenly turned around and yelled at our oldest daughter, "Maile, the force is not with you!" Then she started laughing, but I was now extremely confused and concerned, while Maile was scared. It really was at this point that I knew something was definitely wrong.

She continued behaving in a very bizarre manner which seem to progressively get worse. That evening was another sleepless night. The next morning (Monday), I asked if she was okay with taking our youngest to school, assuming that since she didn't sleep again, she would be too tired to drive. She assured me she was fine, and so she took her while I took the other two to their school. I had an important lunch meeting, but I told her I would be home right after the meeting. During my meeting, she texted me that she was scared. When I asked why, she replied, "I feel like God is telling me something that I don't know the question to and the rain just stopped and I noticed." She added that she was scared to sleep and that she was feeling really depressed. I told her I would be praying the rosary for her on the way home and it happened to be the Joyful Mysteries. She replied, "You're a joyful mystery lol". That was the last text she sent me.

That night, she was up again, and she was talking but didn't make any sense. She was talking about Maile growing up, and then Harry Potter, and other random things. She seemed to start getting more and more erratic, frazzled, and incoherent. By this point, she had slept in three days, so I assumed she needed a sleeping aid or something, but I also felt it would be beneficial to get her medical attention. Assuming she was going through some type of psychiatric episode, I took her to the emergency room at the Queen's Medical Center since I knew they had a psychiatric department.

We stayed at the emergency department for hours while we waited for her to be seen by a psychiatrist. He diagnosed her with insomnia caused by depression and prescribed sleeping pills. I thought she would finally get the rest she needed and start to return back to normal. Unfortunately, the next day, she got worse.

My sisters and her cousin came to keep an eye on her while I took the girls to school and took care of some business. While I was gone, they said she continued behaving erratically and didn't make any sense. By the afternoon, her cousin took her back to Queen's to try to get her admitted. They took her into the psychiatric area of the emergency ward as she become very defiant. When I called later that evening to check on her, I felt somewhat reassured that that's where she needed to be as I could hear her screaming and singing at the top of her lungs.

I visited the next morning, Wednesday, at the psychiatric ward. When I walked in, she was sitting at a table in the middle of the common area. She saw me and hugged me and asked where she was. I told her she was in the hospital. She asked if she was going crazy, and I told her we don't know what's going on, but we're going to get the help she needs. I asked how she felt, and she responded that she felt she was trapped in a strange dream. She also said she was tired, so I told her to go back to bed and get some rest. She agreed and headed to her room. Little did I realize that that would be the last actual conversation I would have with my wife in over a year.

Her psychiatric episodes came back, and she did not respond to antipsychotics. She didn't have a history of mental health issues, so almost by chance, one of her psychiatrist (who was new at Queen's) hypothesized that Yvonne didn't have a psychiatric problem, but a neurological one. She mentioned to me that she had seen a similar case in her previous clinic where a young woman displayed psychiatric episodes that came on suddenly. She said it was called autoimmune encephalitis and that their neurology team was already being consulted. If she did in fact have this disease, it was treatable and the prognosis was pretty good. This was good news for us, and we were very hopeful she would be home very soon. I even told the girls that I expected mommy to be home within a couple of days.

They had found an ovarian cyst called a teratoma, which they said was characteristic of a type of autoimmune encephalitis called anti-NMDA receptor encephalitis. She had surgery to remove the ovarian on which they found the teratoma, and she began treatments immediately. But as time went by, Yvonne physically became worse and worse. She no longer could speak or even focus her attention on anyone or anything. She had uncontrollable movements, called dyskinesia, also characteristic of anti-NMDAR encephalitis. She was producing so much secretions that it posed a danger to her airways, so she was intubated, and placed into the ICU. Eventually, they surgically performed a tracheostomy to replace the intubation. She also had to have a feeding tube inserted. She became extremely catatonic and unresponsive, while her dyskinesia wreaked havoc on her vitals, causing extreme spikes in blood pressure, heart rate, and temperature. At one point, they had to resusciate her because her heart had stopped. Thank God it was only for a very short time.

Days turned into weeks, and weeks into months. At times, she was placed into a medically-induced coma just to try to control her movements. Follow-up tests revealed that the surgery to remove one ovary wasn't completely successful as there were elevated levels of the antibodies causing her condition, so in consultation with her family, we agreed to remove her other ovary, rendering her infertile and triggering early onset menopause. This was definitely one of the hardest decisions, but I am thankful that we were able to have our three girls before this needed to be done. The second surgery showed positive results as her antibody levels decreased.

Through this process, we learned that she has what is considered an acquired brain injury. As with any brain injury, it takes time for the body to recover, so at that point, we expected a long journey. Yvonne spent every holiday, birthday, and special occasion in the hospital. There were times that we were not able to visit due to covid restrictions, including a long period between Christmas and Presidents' Day, which meant not being able to see her on New Year's, her birthday, and our youngest daughter's birthday.

Around May of this year, I had asked one of her doctors, a neurointensivist, if he could give me an estimate of when he expected Yvonne to be able to come home. It was the first time one of the doctors had revealed that, although her condition was rare, they have seen a handful of others with this particular disease, but hers was by far the most severe. And although he couldn't give a definitive timeline, he said that he would be surprised if she was home within the next six months. I asked her neuroimmunologist, her "main" doctor, if she still felt the prognosis was pretty good. While she said everyone is still hopeful, she also reiterated that this is one of the more severe cases that she's seen. She also said that we should be prepared for long-term deficits, particularly with memory, but possibly in other cognitive and mental areas. That was the first time I remember feeling like I may have lost the woman I married.

The "what ifs" started to hit hard. What if she doesn't recover fully? What if she doesn't remember me or the kids? What if she doesn't regain many of her functions? What if I lost the woman I married and what if my kids lost the mother they knew?

It's so strange sometimes hearing people say "you're so strong" or "I don't know how you are able to keep it together". I often found myself feeling weak, helpless, hopeless, and losing faith. I've broke down more times than I can count over the past year. I have become more dependent on others. I didn't expect to effectively assume the role of a single parent at this point in my life. I try my best, but Yvonne was a great mother. She took care of so many things with the girls. She took care of our finances and all their school "things". It has been a huge challenge trying to fill her shoes while balancing running a school, my business and ministry responsibilities, and managing her health care.

After months in the ICU, she began to stabilize more. Her antibodies began to decrease, and she began therapies to help her become independent from ventilator support until she finally was able to breathe completely on her own. This was probably one of the bigger moments that we celebrated. She was downgraded from the ICU to the general floor, which was also great news. As they lessened many of the medications she was on, the phsycial therapists wanted to try to see if they could get her to do different things even though she was still not very alert or responsive. To their surprise, she responded better to physical therapy than they expected. In fact, in the weeks that they worked with her, they eventually were able to get her to sit up, stand up, and even walk! She still couldn't communicate and her progress wasn't always consistent, but she was making progress nonetheless.

Finally, in September, the hospital began discussions about her discharge. We were looking a several options including transitioning to a skilled nursing facility, specialized facility in the mainland, or going home. Each of these options presented huge burdens and challenges. In the end, the Rehabilitation Hospital of the Pacific (RHOP) had agreed to admit her into their in-patient program despite some of the cognitive deficits she had. On November 2, Yvonne was officially discharged from the Queen's Medical Center and admitted to RHOP.

The first day was definitely an adjustment for everyone. RHOP had different protocols and processes that we had to learn. Their staff needed to learn more about Yvonne. And Yvonne was no longer in the same type of facility. Over the past month that she has been there, she has made great progress. While she still can't speak or communicate clearly, she has been trying to vocalize, and she will once in a while say a word here or there. Her walking has become stronger. She started eating some solid foods. And she is definitely more alert and responsive to her surroundings. Her original targeted discharge would have been today, but the team felt that she would benefit from more therapy, which we also agree with since she has been making progress. Her new targeted discharge is December 15.

Overall, we have been so blessed through this entire journey. So many friends and family have been quick to offer us support in so many different ways, from offering to watch the girls so I could take care of things and visit Yvonne, to picking up a meal so it was one less thing to think about. But I've been most appreciative of the prayers and presence of so many. Every week, sometimes daily, I've received messages of support, encouragement, and inspiration from friends and family, near and far. Throughout this journey, as difficult as it's been, I can't help but feel so blessed in so many ways.

However, we know that the road ahead is still long and uncertain. When Yvonne comes home, we still expect that she will require 24/7 care. Currently, she requires two people to assist with her needs. RHOP has made it their goal--our goal--to get her to a place where she will only require one person to assist with her care. But because she will still require 24/7 care, we need to look into hiring caregivers to assist.

Numerous agencies have either said they were unable to provide anyone because they're experiecing a shortage, or the cost for a full-time caregiver can run anywhere between $8,000 to $12,000 per month. Additionally, we recently moved out of our two-bedroom house in Wahiawa to rent a larger home in Mililani so that we could accommodate the care Yvonne will need. Since she has been out of work for a year now, her health insurance lapsed, so we are now paying COBRA out of pocket to ensure she has the same healthcare policy as she did throughout this whole time. Still, having an additional, certified caregiver is not something covered by insurance.

Unfortunately, we do not qualify for Medicaid/Medicare. And while we do receive money from Yvonne's long-term disability insurance, it definitely does not nearly cover the amount of expenses that we expect to have when she gets home. I'm also plannng to rent our Wahiawa home and sell one of our cars to meet these expenses, but we are mostly surviving off of one income. Many have asked how they could help, and this would definiltely be one big way. Every penny donated to this GoFundMe will go directly toward the care the ongoing care that she requires. This includes being able to hire at least one caregiver and continuing to keep her on her current health insurance plan.

Most of all, we continue to need your prayers. It hasn't been easy, but I'm confident that we would not have made it this far without God's grace, mercy, and love. The girls miss their mommy so much, and I miss my best friend. But we know that God is so good, and I know He will not abandon us. We do our best to remain faithful no matter how much our faith has been shaken. Thank you for listening to our story, and I pray that you might consider becoming an awesome part of Yvonne's road to recovery by your prayers and support.