The six weeks since returning home have been filled with so many themes and changes that each time I wanted to write, somethng new appeared in our life and detoured a smooth blog entry. However, this detour managed to bring everything back around under one monstrous theme… although Alan’s safety is always our top concern, the whole point of Alan living through this is for him to LIVE. His immunocompromised status (and previous end-stage failing organs) has always been the driving factor of what we should/shouldn’t do, where we should go, who we should see. We were very prepared for our continued masked life and disappointingly deferred welcome home friend dates, but the reality is, the majority of the world has moved past covid precautions – germs are circulating everywhere in the unmasked omicron world and most people have returned to typical life. We didn’t even have a baseline for typical life but we were trying to establish safe boundaries while keeping a toddler tornado occupied and let Alan embrace living again. All this really translated to was masked family grocery shopping on weekdays, playground fun time when no other children were present, and drive through ice-cream or carry-out thai food, but at least Alan got to have some sense of normalcy and control of his life to not be confined in a fragile box. However, after 2 and a half years of avoiding society and covid, last week our whole Flanigan trio was ambushed by coronavirus. But first let’s rewind.(Or if it’s too long for you right now, at least jump to the end two paragraphs)

The first 3 weeks were pure joy and also every ounce as exhausting as I expected. Alan’s appointments/medical commitments were still demanding and although on some good days, he happily drove himself (and his GT mustang), many days were family chauffer rides or loud wake up calls to ensure he made it where he needed. Plus Reese deserves to be an active kid. Our pups deserve walks. And although countless hours were donated by our parents/Kristin (especially Tom and Chris) to give us a beautifully cleaned and organized house to come home to, living makes a mess and Alan still needed to focus solely on energy for his appointments. But I am not complaining, I happily made time for dishes, vaccuum, laundry, fruit and veggie weekly snack prep,organizing schedules and meds… I embraced, thrived in, and absolutely loved every exhausting minute of stay-at-home mom life. I even took over cooking which is literally the first time in my near 37 years of life!!! Every minute of daylight was spoken for by Reese and when she went to bed, Alan felt great enough for the first time in years that he was excited for a low key date nights. I was burning it at both ends and so fulfilled.

Those weeks made it excruciatingly difficult to find excitement in finishing my master’s; I was loving my mom life but also very nervous about Alan being energized enough consequetively to maintain his health commitments on his own. Sure enough, being out of the house M-F was definitely a monumental strain on Alan. And Reese did not have the best response to that change either, even though she loves her grandmothers plenty. All of this brought my fears to fruition and reinforced that my top priority is still with my family for the forseeable near future. However, (other than marine biology dolphin dreams) Forensics was my first love and undergraduate degree… and this autopsy rotation absolutely reaffirmed that. The medicine and actual work (even though markedly physically demanding) is so challenging and rewarding. Honestly though, I feel almost guilty while there. It is amazing to be using my brain again and feeling mesmorized by the science but I am having incredibly fun days while Alan is still struggling to uphold his committments. It is a fine line between self care and caregiver necessities.

Which all brings me to Alan’s actual health. If he was thriving then of course I would have no problem being out of the house. It is very tough to judge “how” Alan is doing but until he has more easy days than challenging, I don’t promote it as great. Foremost, he showed zero rejection at biopsy last month which is obviously great. He was set to have a biopsy two days ago, but understandibly, it was rescheduled for next thursday. Alan still has a lot of deteriorated “movement” muscles (vs posture muscles) in his back from 6 months stuck in a bed. To eliminate oral opiods, they switched to a muscle relaxor. Even the smallest dose of this med had significant impact on Alan but that included markedly dropping his BP and heart rate and many times his actual muscle tone. There were numerous dizzy, dangerous episodes while adjusting to the med including Alan’s inability to drive himself, let alone walk. He had one sigfinicant collapse but at least I was present for that and able to buffer the fall. Those cardiac side-effects are also the opposite of what Alan needs for healthy kidney functioning. But Alan can’t strengthen these muscles if he’s in constant pain and the pain won’t be alleviated until Alan has more recovery time outside of the hospital. 

Kidney – There may be a big silver lining from the dizzy spells and covid. Alan missed several dialysis appointments and his kidney lab-work stayed stable, and this past week even partially improved! His team had already decided to try only two days a week and then covid kept Alan out of dialysis for 11 days! His next session on tuesday should shed impactful light on how his new kidney is doing.

Covid –  Our past 8 days only solidified that every precaution we took over the past 2.5 years was worth it. If omicron is watered down covid, I can’t imagine if we had been hit with original strength. I don’t wish this on my enemies, particularly all at the same time, needing to care for others while feeling just as horrible as them. Reese began with a fever of 104 Saturday evening; while she barely had a few sniffles, her high fever lasted till monday night but was well controlled with motrin. Then she developed a slight dry cough wed-fri but other than extra napping, you wouldn’t have known she was sick. Sunday morning, I felt like post-asthma attack with stingy heavy breaths and angry lungs, but that could be considered normal for me. Same day, Alan felt sinus pressure but thought the weakness and dizziness could be medication related. Monday brought more sneezes for Alan and I, plus my lungs were on fire and my voice was horrendous, but we had taken several negative tests at home, so I begged Reese’s Dr office to do a PCR (even though reluctant). Tuesday late morning, her test dinged my phone as positive. By now, Reese felt great, I had a horrific deep cough and no energy, and Alan felt miserable and slightly dehydrated but no prominent lung symptoms. Cleveland sent us to a local ER. Stat PCR confirmed Covid positive. After proving Alan’s chest x-ray was completely clear and his labs looked great, they gave him the IV antibody infusion, the preferred immunocomprimised treatment; essentially it provides the blueprint to start mass producing the army, as opposed to naturally waiting the week it may take for his body to figure it out. Between the fluids and antibodies, he felt great when we left the ER that night. I on the otherhand had now spiked a 102 fever and was drowning in body aches which did not let up the next day. Alan’s relief was short lived and wednesday was back to general mallaise. I started paxlovid and we began using the toddler-safe cough meds from her doctor. I was still very sick on Thursday, Reese was coughing and spurts of energized and run down. Alan slept most of wednesday and late thursday but then felt his chest even tighter. We returned to the ER as directed. Luckily, all scans and labs were beautiful, it’s just the life of a heart/kidney patient; essentially the only medications Alan can use are tylenol and benedryl and high bp nyquil, so the hospital answer was “things are safe, you just have to ride it out”, which we know too well. Friday felt less bad – not good, but at least seemed to be on the other side of the curve?! Which lands on today. Day 8 for Reese and she seems clear. Day 7 for Alan and myself, Alan is limited to weakness and light sneezing and my cough is finally out of my deep lung and all aches are gone. Alan also had bloodwork yesterday for his weekly levels so it was reassuring to see his numbers 3 times thoughout covid. 

We are very thankful that this medical plan seems to have kept it managable. Very optimistic for any victories with his kidney since he was able to bypass so much dialysis without catastrophic ramifications. Even though my experience was arguably the sickest, I was so much more concerned for Reese (whose immune system is virtually unchallenged with our isolation practices) and Alan (who only received his re-booster, since his immune system wipe with surgery, on Friday, as in literally the day before reese was sick). This was dreadful but at least we have surpassed the inevitable and hopefully it will ease Alan’s anxiety for returning to living.

And that’s the point again, right? Living. In the 6 days prior to symptoms, we were able to witness a COTA fundraiser in our honor, have dinner at Alan’s parents, Reese and my mom went to a zoo, Reese and Alan and his parents went to a speciallty meat market/kitchen shop, I was at the coroner’s office daily (with an N95), and hours before symptoms we had a family day at a petting zoo and walking barefoot on a lake erie shore beach. All indoor minutes were masked and many outdoor minutes (particularly the fundraiser and zoos), but the world isn’t setting immunocompromised standards as the norm. Living this hypervigiliant life is hard and that’s why the world was eager to abandon it as soon as possible. That is not meant as a dig to society or anyone around us, I mean it as a testament to how hard Alan has to fight for his health at all times. I mentioned all of those things last week not to decifer blame or route of transmission… germs are here, covid or other, and we have a toddler who needs to start to experience the world and a guy who needs to get back to living. and I suppose a mom who needs to find a way to finance her family’s life without fear outside these four walls. Germs will be a part of it but it makes portions of our life a daily struggle that so many others get to take for granted.

I know this was long; I told you these weeks seemed multidirectionally challenging yet coalesced into one thought. I can’t end this without mentioning the COTA fundraisers. Our hearts are so touched not only by the fiscal generousity of the attendees but also the dedication and selflessness from our core volunteer team. Between the two events and shirts, over $15,000 was raised for COTA for Alans Journey. To help put in perspective, our bills were over $6,000 a month each of the 6 months we were in cleveland. COTA funds are providing stability for these days/months of recovery at home, focusing on Alan, his kidney, his cardiac and back rehab, Reese’s stability with her parents, eventually time to study for my boards and then time to find a new job. Although our glimpse of the last event was sparse and secluded, we know how loved we are. We have needed each and everyone of you to survive this dismal but hopeful journey. Thank you will never be enough.