Inadequate Care & A U-Dub Referral!

Just a quick update: They released Patrick yesterday and he spent all day feeling sick. I called 9-1-1 again last night and he went back, only to be released again this morning. A good friend of ours gave him a ride home. He is feeling constant PVCs and palpitations. His pacemaker must be working full time. He's scared. I'm scared. He keeps apologizing to me. I feel like a spectator. There's nothing I can do besides be here for him. I called the University of Washington Cardiology center, where he had the ablation in May 2020. A referral was sent to them yesterday by the Fairbanks cardiologist who keeps releasing Patrick despite his fears of being at home when events happen. They told me their referral process takes two weeks, so if I haven't heard from them in two weeks, call them. I asked to proceed with the referral for Dr. Akhoum, but also to set up a meeting with the transplant team. I don't know if it will happen, but a message is being sent to them with my request. It's like pushing for 100% performance knowing you'll get 25%, but I'll do whatever I can. I may also call FMH administration and see if I can go above the cardiologist to get Patrick admitted to the ICU. There must be a complaint process. I just don't know what else to do. I'll keep updating. Like I said, he's home and trying to rest now.

Another Ambulance Ride & Hospitalization

This is a TikTok I made on Sunday, which was Patrick's birthday, after we called 9-1-1. We had been sitting on the couch watching the latest Croods movie when his defibrillator went off. It was the biggest shock I've seen him receive in years. He felt sick yesterday but that's understandable. When your heart is whacked with that much electricity, your entire body reacts similar to "tensing up," because it's waiting for another shock. It used to take him months to fully recover. Luckily *insert major sarcasm here* his "normal" is at such a low level that it doesn't take long to recover these days. Once he gets back to feeling crappy, he's good. Sort of. Last night he told me he usually feels really good in the morning. It's hours after he last ate so there is no nausea. And his body has rested for hours so his heart is calm. I felt confidant in waking up at 6am before everyone else so I could get a couple hours worth of work done in the garage. He called me at 7:43am to ask if the kids were awake. I said no and he hung up. I resumed my work. I was setting up the garage to assemble and stain 16 toilet boxes for this weekend's bazaar. And after earlier this week when I forgot to hook up the shop vac to the table saw before cutting those 16 toilet boxes, I had quite the mess to clean up. I had just set up our folding table, which he said he would also need to make ulus later today, when he called again. It was 7:52am. I said, "Hello?", fully expecting him to ask for help with the kids. All I heard was moaning. I knew exactly what that meant. I dropped everything and entered the house, where Lily met me to say something was wrong with Dad. I reached him in seconds, and he was coming down from a significant event. I called 9-1-1 again, but by the time I finished talking to them he was almost fully recovered. This one had hit him hard. He was shaky and weak. His chest hurt. He was feeling sharp pains, and complaining that he was tired. I packed his bag and unlocked the door so the medics could come in. "I'm sorry, Haley." He kept saying it over and over. Sorry for leaving me alone with our four kids and two grandkids. Sorry for not allowing me to finish my work in the garage. Sorry for worrying me. I reassured him several times that he didn't have anything to be sorry for. I hugged him. I packed a baggie of Dandy Blend for him, which is his caffeine-free coffee substitute, and a mixed baggie of Hazelnut and Vanilla creamer. At least in the hospital, if they allowed him to drink, he could have his morning coffee. So here we are, me at home with the six kids and he at the hospital, fighting to be allowed to stay there. What a mess we're in. I don't have any updates. He hasn't even seen the cardiologist yet, but is having active events all the time. Small ones, easily paced out by his pacemaker. I'll keep updating here. I try not to post too often, but I also have no idea how this week will play out. He may come home and not have another event for days or weeks, or he might tell the hospital he wants to be flown to Seattle when they tell him they would like to send him to Anchorage. No one knows. Thanks again for all the prayers and well wishes.

Let Me Have It

“Aww.” Patrick says I say that a lot. Not like, “Aww, how cute.” But like, “Aww, a kitten.” A sick kitten. A starving kitten. “Aww.” I say it when he says he doesn’t feel well, and when he says he is having a heart event. I say it every single time. He pointed it out, I think, because it annoys him. But I told him, “Let me have it.” Let me have this instinctual reaction my mind has developed to situations that touch my heart; to situations that provoke a reaction from me rooted in empathy and concern. Let me have it. There are situations in our life together where I lack empathy. One popped up recently where I had to tell Patrick afterwards, “I’m not a saint.” It was a hard time, and while I won’t go into great detail, I can summarize it here. When someone is sick or uncomfortable it can affect their mood. Patrick often mentions his dad, who passed away in 1989 from a very similar condition to what Patrick now suffers from. He tells me, “I understand why we had to walk on eggshells around him.” I wish I had been able to meet Patrick’s dad. He was a formidable person, but I believe he loved his family fiercely. But I can understand when you face the end of your life much earlier than you ever would have anticipated, and you have to do it while nauseous all the time, in pain, and suffering from heart episodes that leave you wondering, “Is this the one?”, that you won’t always be in a good mood. And who is closest to you? Who are the easiest targets? Your loved ones. I have cautioned Patrick, “You shouldn’t chase away the people who love you the most.” You guys know him. You know his joking personality, his zest for life, his precociousness. He is somehow a grown man, a toddler, and a teenager, all wrapped up into one body. He picks his nose on the church live feed. He has cultivated lasting friendships with random cashiers at Fred Meyer, often loudly asking them if the party is at their house and if they’ll supply the booze. He tells bazaar goers not to loiter at his table in a strange and weirdly successful attempt to strike up a conversation and draw them into his space. He is a character. But that’s not to say the jokes are always nice, or the comments warranted. There is a darker side to chronic illness, and that is how it can affect someone’s mood. While I implore you to have grace for your loved ones afflicted with the pain and discomfort often associated with these ailments, I also suggest you care for yourself as well. Yourself. The caregivers. The loved ones they chase away. I am fully aware my role as “caregiver” is not what it could be. My role entails the occasional mad dash from outside because a child has come to tell me Dad is having a heart episode. Its occasionally applying the blood pressure cuff and frantically looking for the oximeter. Its rubbing his back, cradling his head to my stomach as the episode roars through his body and we both pray. But thats 1% of the time we spend together. My role as caregiver is not full time. I am wife. Friend. Confidante. Patrick and I clash sometimes. It happens, especially with two people as polar opposites as he and I. His vivaciousness collides with my tranquil nature. His jokes invade my calm. My chaotic organization is in direct opposition to his desire for an empty sink and folded laundry. But a long time ago a wise man gave a message on EGR - Extra Grace Required. He said there will be people in our lives whose presence require we up the ante on grace-giving; that we operate in a manner that filters our interactions with these people through a prerequisite of grace. Patrick is often one of these people. And that’s one of the reasons why I love him. He keeps me on my toes. I said earlier that I am not a saint. I have my own feelings and emotions, my own reactions to life’s hardships, and my own coping mechanisms. One of those is to immediately draw on my empathetic nature and to respond with, “Aww,” when something touches my heart. And Patrick’s pain and suffering will always - ALWAYS - touch my heart. So let me have it. Being human is a singularly extraordinary and unique experience. Before my life is over I plan to run the gamut of emotions, because I can. That includes love, anger, happiness, confusion, surprise, sadness, and yes - empathy.