Updates, Love, And Thank Yous

I have been really hesitant to post an update for a wide range of reasons, so let me begin by saying Patrick is doing well! He is in much better health than he was over the past few weeks, and is even at the shop alone. This is a direct reversal from our opinion last week that his days of flying solo, driving alone, and manning the shop independent of the kids and I were over. But I have put off posting an update because day by day, even minute by minute, I never know if something is going to change. Sometimes there is information given to Patrick by a provider that gets lost in the marriage-conversation translation. He just forgets details. Other times, he doesn’t ask questions that really do need answers, or doesn’t get information I would love to pass onto all of you. There are also times when one doctor says something and another says something else. Sometimes information changes. Care plans change. Or they stay the same when they shouldn’t. There are certain things I have written in this blog previously that aren’t true anymore, never were true, or… You get the idea, right? It can be frustrating. For instance, we were told he would be on the heart transplant list but at a low priority. It turned out later that that wasn’t true. He had met with the transplant team, yes, but the paperwork was never completed to finish the process. *sigh* That was a big one. Patrick’s current health and how he is feeling is also like a roller coaster - the big kinds that go up and down, that drop you from a hundred feet at sixty miles per hour and send you careening towards what looks like a drop off but that is actually a segment that corkscrews you into a vomit-inducing oblivion. It’s the kind that sends you through loop-de-loops, leaving your head spinning, and as the ride coasts to a stop you’re not sure if you want to hightail it out of there or get back to the end of the line for, “Again! Again!!” Sometimes I ask how Patrick is doing, and his answer sounds like, “ΣFr = N + mg = mv2/r → N = mv2/r - mg.” “That good, huh?” Because I never know. I truly never know. Sometimes he will tell me he is a 2 on his “Uncomfortability Scale,” but I squint my eyes, pick up on the twitch of his mustache, and reply, “So you’re actually a high-3 but you’re going to say you’re a solid 2 so we can have some husband and wife time tonight?” I see right through him. Other times it’s a bit more clear. His jokes get mean. He snaps at us for small things, like a pile of clean socks on the couch. He demands quiet while we’re riding in the van with a sugared-up three year old. Then there are times where his body twitches and his hand goes to his chest. His stare gets distant and I know he’s focused inward, examining his heart, his heart beats, the way his chest feels, the odds of another pacer-therapy, the odds of a stronger defibrillator shock, or the odds that it was a one-off and it will calm back down and he can pretend like nothing happened. Or when he takes hold of the shopping cart in the cereal aisle of Fred Meyer, rests his forearms on the handle, and drops his head. I watch his back as he takes deep breaths, calming whatever mischief his heart is up to inside his ribs, feeling the missed and irregular beats with each breath as it struggles to pump up against his lungs. Then there are the times when he chases Samuel around our kitchen island. Or when he belly laughs at Michaela as she squeals and squawks sliding down a hill at thirty miles per hour, her voice a pleasing and hilarious mix of terror and delight. Or when he smiles at me - truly the smile of a man who isn’t suffering from extreme nausea and chest pain - for the first time in weeks. I know that smile. I recognize it. It speaks to me; to my heart. It reaches his eyes. It extends his crows feet (sorry, Patrick). Widens his mustache. Wrinkles his cheeks. Reminds me why I’ve committed myself to this broken, special, defy-the-odds man. Think of all the platitudes you’ve ever heard of regarding love between soulmates, and you’ll know my heart. Boring, sentimental, inane platitudes. Love conquers all. Opposites attract. God has a plan. Age is just a number. *snicker* They lived happily ever after. If I could sit in that last one, like it was an eternal outdoor pool at a mountain chateau, and I could watch the sunset every night with Patrick for the rest of time… I would do it. But I suppose I was supposed to be updating everyone, and here I am waxing poetic. I must be in a mood. … Patrick is doing okay. That Uncomfortability Scale I mentioned earlier is a daily topic in our house. Some days it refers to heart episodes, and some days to his gastrointestinal issues - the bloating and nausea. But it’s always a good indicator of how he is doing. If you ask him and he says he’s a 3 or 4, that’s not an awful day. It’s doable. If he says he’s a 2, that’s a miracle. He is very rarely a 2. There have been times in the past few weeks when he has been a 9. Those are bad days. 7-9 makes me cringe. It makes me want to cry for him. Thank God those days seem to be gone for now. Between March 13th and March 19th I called 9-1-1 four times for Patrick. The first two were for defibrillator shocks. The second two were for extreme chest pressure, and because he had trouble breathing. He also went to the ER on his own once during that week. All five times he was sent home. He wasn’t admitted. (There was one ICU visit recently but it was short - just a few hours - and I don’t think it was during that week). The doctors would say, “Your pacemaker did its job, and the cardiologist is saying send you home.” That is so frustrating. One ER doctor even told him that’s standard procedure for when they can’t find the cause of what’s happening. Stamp the discharge paperwork and boot ‘em out. It’s frustrating for the family, and likely maddening for the patient who is afraid for his life. Despite feeling better this week (3-5 on the scale), Patrick went to see a doctor at TVC 1st Care. He explained what has been happening to him, and has already had an abdominal CT scan, and then two more CT scans to look specifically at his bladder and kidneys, and will likely have a procedure that sends a camera up his urethra to look for a kidney stone that’s too big to pass. Also, there’s a spot on his liver that they need to investigate. Oh, joy. Why did it take a visit to a primary care physician to find someone willing to help Patrick improve his quality of life? March 13th through March 19th was… *insert appropriate swear word here* As for Seattle, this improvement in Patrick’s health may mean he is still not eligible for a transplant. His broken, battered, bruised, used-up heart may be in too-good condition to warrant such an invasive procedure. He might be “too healthy.” But we have a referral in with the University of Washington cardiac center for the electrophysiologist who performed the May 2020 ablation, because a referral to the heart failure and transplant specialists will have to come from him. So with any luck, sometime before mid-May Patrick will fly down for a follow up with him. We were hoping it would be sooner rather than later, but it is what it is. Ah, another platitude. And as an aside, and to make this blog post as ungodly long as possible, I would like to thank you and apologize at the same time, because this blog has turned into so much more than a “Update The Gazillions Of People Who Love Patrick” blog. It’s my outlet. My diary. For those of you who may be new here, you’ll hear about Patrick’s body and what it chooses to do, our opinions of his medical care, gory details (when they eventually happen), vague mentions of our sex life (it’s pertinent), and everything in between. Because that’s Patrick and his Big Heart. All the crass, intimate, humble, loving, gory details.

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.