I have posted on Facebook in the past several weeks because I couldn't access this account from the hospital, unfortunately, that's where we've been. Tiffany came home for the holidays on December 15 and was distraught to see Matthew's condition. The conversion disorder had taken on a different face, Matthew's panic attacks had increased again in frequency and the attacks themselves changed into hideous full body cramping that lasted anywhere from a minute to 12 minutes. Matthew hadn't missed a day of school until his hospitalization the weekend of November 1, after that we just couldn't get back on track. Joe and I missed work, my mom stepped in to help and Matthew was lucky to get to school a day and a half a week. These new attacks came in waves that would escalate and repeat over and over again. He was in agony. I called the neurologist's office time after time, I called and sat with the counselors and psychiatrist at Loma Linda Behavioral Health where he was attending. I couldn't make them understand the pain he was in when these struck him. Finally, December 17 I went to work and left Joe at home with Matthew, my mom came to help. By mid morning they called the EMT's and Matthew was rushed to San Antonio Hospital, I met the ambulance when it arrived. He was unconscious and had been for some time. His CK levels were at 117,000, normal range high is 450. His body was eating his muscles faster than his kidneys could keep up and they gave up. He was so sick. Dr. Zupanc, his neurologist, made arrangements to transfer him to CHOC and we were there late that evening.
At CHOC doctors decided to pump him full of fluids to flush his system of the toxins his body had made. Those panic attacks were like running one marathon after another, after another with no breaks and they beat Matthew's body. Adjustments were made to his seizure medications, he was hooked up and taken off of EEG monitoring but they struggled to get him stable and get these episodes to stop. Thankfully Dr. Z. refused to release him without resolving that issue. On December 23 Matthew was moved into a room for continuous monitoring for seizure activity, one that is hard wired for that purpose. I'd been with him all night and all morning, we'd moved into the new room, Joe had arrived and the tech was hooking him up to the leads. I took a quick break for lunch. When I came back Matthew was at the end of an attack that looked as if it had become a grand mal seizure, the EEG said there was no seizure activity. Joe held Matthew's right hand while I held his left; two doctors were still in the room watching as Matthew finished writhing in pain. Matthew stopped breathing, I said this out loud, but then I put my hand on his heart and it wasn't beating. Joe and I began to yell for help, even with two doctors standing in the room they were so surprised that they stood in shock as we scrambled to get help. Dr. Annie Trent, the fellow on the floor, came flying into the room and leaped up on that table. She began CPR as nurses we loved "bagged" Matthew and tried to start his heart again or at least breath for him until they could. In less than a minute the Pediatric Intensive Care Unit team arrived and took charge, Dr. Tony orchestrated Matthew's resuscitation. He removed us from the room, I thought I was going to loose Joe too. He broke into pieces. Once Dr. Tony took over some kind of peace came to me and I realized that Matthew wasn't going to die that day, this doctor and his team would revive him. They did, and we are eternally grateful to each of them. It seemed that wasn't the end of the trauma though, just another bump along the way.
Matthew was unconscious for 20 hours, until the doctor on rounds said he thought that Matthew should be showing signs of waking up. So I began to pester him and stopped letting him rest, it didn't take long. In less than an hour he squeezed my hand and opened his eyes. I had no idea what kind of impact cardiac arrest has on the human body. Matthew was blind, he couldn't move his left eye at all and another MRI was done. This time a lesion was apparent on Matthew's visual cortex, every doctor called it something else. . .a stroke, a scar, a self-resolving lesion. Beyond that Matthew was incredibly weak and confused. This was Christmas. By Saturday his vision had return and was restored but now it was decided that Matthew's heart stopped because of SUDEP (Sudden Unexpected Death by Epilespy), made all the more remarkable because it didn't happen during a seizure. Being wired at the time proved this. His heart rate simply dropped from 80 to 60 very briefly and then stopped. This made acid levels around his heart sore and require more IV fluids. The cardiologist who was called in decided that Matthew needed a pacemaker to prevent his heart from ever doing that again. On December 30 his pacemaker was implanted.
That's enough, right? More than enough? Not yet. Once the pacemaker was in Matthew was struck with pancreatitis. Now his pancreas wasn't working right. Any one of the things he went through would have been painful, debilitating, but Matthew kept fighting. He was the most angry about being taken off food for this issue. We stayed a week in PICU where we met even more incredible doctors and nurses, people in the health care profession for all the right reasons. The care he received there was remarkable, it truly was care. As all Matthew's levels began to regulate and the panic attacks became less violent and less frequent, Doctor Zupanc began the search for rehabilitation. Obviously what we had been doing wasn't working.
Dr. Z. explored and searched, she contacted Anthem Blue Cross and they were knowledgable (so much so that she was impressed) and offered ideas and contacts that hadn't been considered before. On January 14, 4 weeks to the day after entering CHOC, Matthew was transferred to Acute Rehabilitation at Cedars-Siani Hospital in Los Angeles. Tiffany has gone home, Joey has a promotion that calls for travel (and he has a horrible cold) and Nana isn't up to navigating all that way on her own. As we checked in we found that we could stay in the room with Matthew but there is not a place to shower for family. The first several days Joe and I took turns, today I returned to work and left Joe and Matthew on their own with the best rehab doctors and therapists I've ever met. Cedars is remarkable, unfortunately, with all Matthew has been through their goal for his dismissal is that he can take care of 75% of his transferring and needs. This is a huge step back from where he was before these awful panic attacks turned in to these awful attacks. He is disappointed, me too. We held this hope that he would be able to stay there until he could get around with a walker at least, not very realistic in retrospect. Matthew continues to work hard. He is the bravest person I know and I have more respect for him every day. Through all of this he has become more gentle, empathetic and kind; he has an incredibly tender heart. Frankly, it must have always been around because his best friends, those still around, they reflect the same qualities. Matthew's dismissal is currently scheduled for January 28, just 9 short days away. I want them home but I want him restored, not just walking, restoration.
There is another plan in place after that, but this is more than enough for now. I will keep up better.