Respiratory Syncytial Virus (RSV)

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Respiratory Syncytial Virus (RSV)
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    Maria Dillon

    Feeling Exhausted After Fighting COVID-19 for Weeks

    I have been “COVID-ing” for nearly five weeks, but it feels like it’s been an eternity. I knew it wouldn’t be a good thing for me to catch COVID-19 — I am chronically ill with respiratory disease. Last year, I had a “test run” of what COVID-19 might look like when I got gravely sick with respiratory syncytial virus (RSV) and ended up in the hospital. It took me a good month to recover from my respiratory symptoms, and I experienced soul-destroying post-viral fatigue for nearly four months. It’s fair to say that I wasn’t looking forward to having COVID-19, and I did everything in my power to avoid it. I worked from home, avoided crowds, and wore my mask. Still, COVID-19 did eventually ambush me at home, and the only silver lining was that I caught the Omicron variant when I was fully vaccinated, and I avoided other variants. I am thankful that meant I was able to manage my symptoms at home and avoid a repeat of last year’s hospitalization. Still, this “mild” form of COVID-19 is doing its worst inside of my body. In my first week of symptoms, I developed intense chest and sinus infections and had to increase my medication and take antibiotics. Week two saw the infections simmering down and serious gastrointestinal symptoms ramping up, including a diminished sense of smell and a nasty metallic taste in my mouth. Week three saw me reach the full impact of fatigue, and simple tasks became mammoths. The amount of energy required to even think clearly was exhausting. During week four, I still sounded like I had been gargling on nails and had a lot of pain around my ribs and upper chest. The doctor recommended taking my medication and another round of antibiotics. Unfortunately, though, she had no magic pill for my fatigue. COVID-19 fatigue is an absolute beast, and it is so much more than just being tired. It may feel like an incredible heaviness in body and mind. It can come in the guise of slow, slurred speech, thought processes clunking away at a reduced speed, and emotional sensitivity amped up to the max. Focus may be a struggle as the mind flits and drifts with a will of its own. Motivation and enthusiasm can be sucked into the void of this endless, dark tiredness. Limbs may feel heavy and clumsy, and dexterity can be a thing of the past. To me, this fatigue feels as though on every level — emotional, physical, and spiritual — the essence of who I am is being diluted. While I can still appreciate who I was, I’m struggling to recognize the person fatigue is shaping me into. I think I can distill the impact of this beast called “fatigue,” but it makes me feel so darn sad. In week five of my COVID-19, I have managed the mammoth task of getting ready for work in the morning and driving into the office — rather than working from home in my dressing gown. While my lungs definitely feel better this week, they still ache, and fatigue continues to be the gift that keeps on giving. This “mild” illness has stolen way too much time from me and has ripped away my feelings of resilience. I have been chronically ill my whole life, and I know I can cope with this. I am struggling though, and if anyone else tells me again that my COVID-19 symptoms are “really mild” or that I’m only struggling because of my underlying health conditions, I might just have to sit on the floor and have a cry. I am completely over “COVID-ing” and naps and feeling my head hurt after I perform simple tasks. COVID-19, can we just part as friends now, you nasty, wee, viral overstayer?

    How Loss and Illness Changes a Marriage

    With tears in her eyes, she looked at me and said, “I want the man I married. I want him back. Where is he?” Full of anger, I looked at her and simply said, “The man you married does not exist anymore, and I don’t think he is ever coming back.” With that, I stormed out of the house — neither of us sure if I would ever return. It had been a hell of a few years. There had been some amazing highs, but more devastating lows were about to come. My wife and sister had just given birth to my daughter and nephew. My wife’s pregnancy had been extremely hard, she had been in and out of the hospital five times, but I was a new daddy, my wife was doing better, and things seemed to be heading up. Little did we know our world was about to change drastically. Three months after her birth, my daughter had to be hospitalized with RSV (respiratory syncytial virus). The fear and anxiousness we felt at this turn of events was quickly overshadowed on the second night of our stay when we received a call telling us that my sister was downstairs in the ER with severe headaches. As tests were run, brain tumors were discovered. It was like getting sucker-punched in the gut. Fear, anger, sadness, worry, discouragement filled us, and we knew everything was now changed. As a person and family of faith, we prayed and hoped for her healing. We rallied around her and did everything we possibly could to help, working to follow all the doctor’s recommendations. But healing this side of heaven was not the plan, and six months later, she passed. She was one of my baby sisters, only 16 months younger than me. There was not a time I could remember when she was not there, and now she was gone. God was not supposed to let this happen. I was angry, sad, hurting, and questioning even my faith. How could God let this happen? Unfortunately, we weren’t done yet. Three months later, we received the news that my dad had stage 4 colon cancer. My other sister came to see me that afternoon, and I only got two words out before I was crying. On the sidewalk of my school, we stood there in tears holding each other. It was happening again; what were we going to do? By this point, our family was reeling. God, what are you doing? My anger, frustration, and hurt were all-consuming. I remember simply looking to heaven and saying, “Dear God, not again! Don’t do this to our family again!” To the outside world, I looked OK and seemed to be managing things well, holding to my faith, and making it through. Inside, though, I was done. I was ready to give up my faith, quit my job, and even throw away my family. I was so mad and frustrated at life, especially after all I had already walked through with my health. I was just done. What was the point? If this was what life was about and where my faith got me, I didn’t want it. I had always been optimistic and a person of deep faith. Walking through many trials and struggles I’d kept a good attitude, a caring heart, and deep faith. But that was over now. Tired of suffering, tired of my family hurting, and tired of the pain, I was angry and just did not care anymore. Crap was going to happen, so what did it matter? Only those living with me truly saw this because I was pretty good at wearing the mask. I knew the right things to say and do, but eventually, that acting caught up with me, and the anger and frustration I was bearing finally broke through. This was the straw that finally broke the camel’s back — the moment I finally broke. The stress our family had been under financially and physically was taking a huge toll on us and our marriage, both mentally and emotionally. Running on fumes and emotionally exhausted, an argument ensued. Honestly, I can’t even tell you today what that argument was about, but the anger and vitriol pouring out of me was astonishing, even to me. This was not the person I was — but this was what was coming out. She sat on the bed looking at me, hurt, with tears, simply wanting the man she married, but at that moment, I could have cared less. I was tired of being the happy warrior, the strong one, the one who kept getting up after I was knocked down again and again. When she said that, all I could say was, “The man you married does not exist anymore, and I don’t know if he is ever coming back.” The hopelessness and rage I felt was destroying our family. Tired of fighting and dealing with the crap of one thing after another being thrown at us, I was finally ready to give up. Hearing myself say this to the woman I loved destroyed me. How and why my wife stayed with me I will never know, but somehow, she did. Somehow, she found the love and the strength to keep loving me and caring for me in the wake of these devastating life events. That year changed me. Some realities of life sunk in, and I realized that some things you just can’t fix. I wish I could say everything went back to normal, and I once again became my old self, but I did not. I did heal, and my wife and I found a new place of love, care, and commitment. I found a renewed and, in some ways, deeper faith, but that year changed the person I was and changed my perception of life. It gave me a soberness I had not had before, and while I had a deep appreciation for the time and people I had in my life, there was hurt and wounds that continue even to this day. Some of these same feelings I dealt with again when I learned of my Parkinson’s diagnosis, and I would be lying if I said, as hopeful and optimistic as I am, there are not still days of anger and frustration, and days when I want to give up. Walking through my previous struggles has given me the perspective and strength I needed to walk this current path, hopefully, a little better, but it is still hard, and still hurts. While my wife never did get back the man she married, this new man has learned and grown, and we have found that place of peace and love — at least most days — that we need as we walk through this latest trial. I am not the man she married, but she is not the woman I married either — which is good — because I am not sure those two people would have survived this. Our relationship was forever changed that year as we found our footing to begin a fresh start in the wake of these tragedies. I realized that these events shaped me and made me and our relationship what it is today. I still battle many of the same things I battled that year, and sometimes it is hard not to be that person again. It took understanding and sacrifice to walk this path — sacrifice born of a special and deep love and commitment. Even when I was pushing her away, she held me close and helped me heal. That is the loving sacrifice that so many make who help us on our journey. If we had let it, anger and hurt would have destroyed us, and at times we let it, and that is the true choice we each have as we walk the path of grief, loss, trauma, and trials — it can be what separates us or what bonds us together, but regardless, it will change you, just as it changed me. There is forever a hole where my sister lives now. Some days it is more painful than others, but I have finally learned how to live with it day by day. After your loss, your trauma, your diagnosis, you will never be the person you were before, but only you can choose the person you will become, and only together can you and those around you choose what your life together will look like. Yes, these things will change you, but just like anything in life, what we choose to do with it is what really matters.

    Elena Croy
    Elena Croy @ebcroy

    Socialization for Kids With Down Syndrome During COVID-19

    We’ve been “doing COVID” now for almost a year, living in New Jersey where some of the worst outbreaks occurred last spring, unable to deny the painful truth of this lethal virus. The latest outbreak in our area isn’t of COVID, but of COVID fatigue, and it’s taken me time to empathize with families who are not at increased risk and who are struggling emotionally in real and serious ways with social isolation. As it is with disability, we often don’t get to cater to our struggles and we grow accustomed to playing by different rules. The conversation about “returning to normal” has shifted from who has antibodies, to a risk-benefit analysis of social gatherings, to who has been vaccinated, but it’s that middle point I’m stuck on—the risk-benefit analysis. Our daughter is 5 years old and has Down syndrome. In 2019, RSV circulated around our community, but the average parent couldn’t have told you so because their child just had a runny nose. Our daughter, on the other hand, unable to clear the mucus that was settling into her little body, was in the emergency room, dehydrated and feverish, on a Friday night before the December holiday break. Last spring, parents of children with Down syndrome were certain, based on past experiences of health complications that this novel coronavirus, as we were then calling it, was going to express differently in our children than in others. However, there was no medical evidence to support what was a mother’s instinct besides the comorbidities the general population was instructed to consider, such as heart disease or obesity. At the time, our cardiologist felt our daughter’s repaired heart would be strong enough during an infection, and our Down syndrome specialist felt that although our daughter has leukopenia, or a low white blood cell count, she would have a sufficient immune response to the virus. Our community’s concerns were finally validated when in January of this year the CDC had enough data to add Down syndrome as a risk factor for increased complications. Thankfully, this also bolstered the state-level argument for early vaccinations. However, our daughter is too young at this time to be vaccinated. We are extremely fortunate to have in-person learning five days a week in our school district, but when our classroom or school closes, our family is thrust into total isolation. In theory, there are plenty of places we can go to play, such as parks, playgrounds, indoor gyms, music classes; they’re all open and available to us. Masks required. Stay 6 feet apart. Some children with Down syndrome have done extremely well adjusting to wearing a mask and following directions to remain socially distanced, but our daughter has a strong sensory defensiveness to people or things touching her face, so she still isn’t able to tolerate a mask. Out of the kindness of their hearts, adults are often willing to make an exception for our daughter when it comes to wearing a mask, or accept that she wear just her face shield, but the kindness of a person’s heart doesn’t reduce our daughter’s increased risk of complications should she be exposed to the virus. Then there’s the social distancing. I had no idea that preschoolers could independently operate Google Meet until I saw a little girl muting and unmuting herself to verbally answer questions during remote gym class one afternoon. I had no idea that preschoolers had the coordination to tug their pants up and over their little bottoms after using the bathroom until this goal was added to my daughter’s IEP. The list of self-help items my daughter needs adult assistance with is long, and although it gets shorter as time goes on, she requires someone within close physical proximity whenever she is outside of our home. Almost a year has passed since we were first introduced to social distancing, and winter has us weary. The disabilities social program we frequented every Saturday morning, which serves a beautiful community of medically fragile children, has been closed since last March. Recently, I figured there had to be a group working with children who have disabilities that would have figured by now how to socialize in a fun and safe way in person, so I finally researched Special Olympics only to see that our local chapter has officially canceled both their winter and spring schedules. We continue to cherish our precious time together as a family, and we even started a social bubble for a half-hour of indoor play with one of our daughter’s classmates once a week. We are also extremely fortunate that both of our children attend in-person learning, but when we shift to remote learning due to community spread, we have very little available to us. Everyone’s risk-benefit analysis will land them in different places, and I can only hope that those same parents who are successfully able to send their children to dance class and basketball practice in masks will be there for us when we achieve herd immunity — strong, fulfilled, and willing to lighten some of this load we’ve been carrying in isolation across so many seasons.

    Sarah Payne

    Managing Care for Medically Complex Children During Covid-19: Tips

    Quality of life. Pediatric palliative care. These are heavy terms for parents of medically fragile or terminally ill children to think about. Then, the world adds a never-before-experienced pandemic to this already challenging mix. As parents of a medically fragile child who has introduced us to those two heavy concepts, we saw COVID-19 as another weight on our delicately-balanced scale.  In some ways, we were prepared more than the typical household. We have been using good hand-washing practices and temperature checks for years, long before it was on trend. We’ve had surgical masks, gloves, hand sanitizer, and a pulse oximeter set out like decorative objects on our end table since Maddie’s first nearly-fatal pneumonia. Social distancing is the best way to describe our behavior during the long winter months of  respiratory syncytial virus (RSV) and influenza season. So, on the one hand, we felt like “Hey, we can do this, it’s just winter again.” However, we have a typically-developing 4-year-old who doesn’t adhere to CDC guidelines. How do we as parents keep ourselves and Maddie safe, but also not totally hinder Ava’s development and life experiences? That’s where we began to draw on our palliative care appointment discussions. My best way of describing palliative care is this: we know that our child is not going to “get better.” We know that a number of her conditions could be fatal if an illness went too far. We also know that we love her dearly, and her role in our family is important. So, palliative care is a way of organizing our family’s goals. What interventions do we want when Maddie is sick? What additional cares are feasible at home, and what is more than we can handle? How do we give her the life she deserves, but also a life we can all enjoy together? Every year as Maddie’s condition has become more severe, we’ve re-evaluated our decisions for our family. There’s a fine line between giving our girls life experiences that we value and putting Maddie into an inevitably risky situation. Sometimes the line isn’t there — it’s more of a Venn diagram where we all feel stuck in the middle. We made the decision to pull Ava out of daycare — too many kids from unknown families. The downside — where’s the socialization that a young child so desperately needs? We looked for a “safe family” that we could continue to have play dates with, allowing the peer play she craved. We also made the decision to put Ava in a small weekly dance class, with fewer than 10 people in a spaced-out studio. Is it possible that she could contract COVID from one of those people during her 45-minute class? Yes, unfortunately it is. But, did we want her to have a group experience this summer before she headed off to 4K, also yes. Our family weighed it out, and this tipped our scale to a feasible risk. With Maddie, some things haven’t changed. She’s been on a home-based service IEP the past two years. However, when schools went virtual, kids like her were left to either be placed in front of a computer screen, or have parents that magically transformed into PTs/SLPs/OTs, while also parenting and caring for medical needs. In our house, neither happened. We read books, Maddie played with Ava, and we performed daily care. However, in my gut, I felt like this wasn’t best for her quality of life. She certainly wasn’t at risk for COVID during these mom-led toddler time activities. But, she also wasn’t working on her vision or communication books either. We never know how much time Maddie has left with us. We also know that COVID is going to be around for awhile, and doing “nothing” to further Maddie’s development just wasn’t an option to us. So, after involving our pediatrician and school district personnel, we came to an arrangement of “yard-based” services. We’re six feet apart, wearing masks and gloves, with staff guiding myself or Maddie’s nurse through her educational activities. This was a good compromise between protecting Maddie from COVID and also giving her experiences that we value. Risk-benefit analysis complete. Am I claiming to have life all figured out during this pandemic? Absolutely not. But sometimes one small victory can really boost your confidence in navigating life with a medically fragile child. I’m also not too proud to admit that I make a mean pro/con chart. Maddie’s life certainly has challenges, but it’s also prepared us to navigate yet another unforeseen circumstance. When you’re a “medical parent,” each season is predictably unpredictable.

    Abigail Burton

    How Our Child's Palliative Care Team Helped Our Whole Family

    Today, I share my story about palliative care for a child. Our palliative care team has asked me to share my experiences. I will be helping with an education session for doctors with little to no experience with children like my Matthew. So I wanted to share my story here with you. Learning We Would Need Palliative Care Matthew was medically complex from the beginning. But it took us and his teams months to clue into just how complex and fragile he was. Towards the end of the first year, I had a soul-crushing conversation with an ICU doctor. After being rushed to hospital again, Matthew was in ICU. The doctor reported to me after two hours. They were doing everything they were prepared to do, but they weren’t sure if it was going to work. A few days later, Matthew was actually on the mend. Almost back to himself when the doctor came to chat. “When is your next appointment with his pediatrician?” It was less than a month away. “OK, when and not if you come back here. I want a very clear set of written instructions about what you want me to do with Matthew.” This doctor knew there was something very serious going on. He had cared for him several times before. He was the first to put his finger on the growing suspicion I had. Matthew wasn’t going to just “grow out of it” as so many nurses and other professionals had tried to reassure us over months. He asked me how I felt about it, and I remember saying “It’s nice when someone finally says out loud what you already know.” I had stopped believing the empty reassurances weeks before that. Matthew had spent between one to three weeks in the hospital every month or so since his first admission at 9 weeks old. Not counting special care or specialist appointments. He caught every bug that was around, RSV, para-influenza, every cold virus. Matthew was tube-dependent and hadn’t developed much that year. He grew and put a little weight on. It was all hard won. Before We Had a Chance to Process, It Got Worse Between the ICU doctor’s chat and our pediatrician appointment, Matthew was discharged and then re-admitted again. We woke one night to Matthew being grey, if I recall correctly (sleep deprivation was a huge part of my life for years until I made some changes). I remember Luke holding his tiny body and speaking to the emergency call operator. Matthew being small enough to fit in his hands and forearms. As Luke described Matthews condition, the operator instructed Luke to lay him on the floor and begin CPR. I could see and hear the panic in Luke’s voice and body language as I watched. I dressed, turned the outside lights on and opened the door for the paramedics when they arrived to make us easy to spot. I believe it was this ambulance ride where Matthew’s breathing would slow so much that the paramedic and I would shake him, tickle his feet and squeeze him to stimulate him to take another breath. The paramedic bagged him all the way to the hospital. Reassessing What We Thought Luke came into the hospital later that morning, and we sat together. We had briefly discussed the ICU doctor’s message that we needed clear orders after the last admission. Luke’s initial response was, “I don’t want to ever feel like we didn’t do everything we could.” As we sat there dealing with this all over again in such a short space of time, Luke said to me, “How much of this can he take? What are we doing to him?” It was easy enough then for us to sit with the pediatrician and discuss the options. We signed off on our first set of advanced care orders. Not for ventilation or CPR. We were referred to Very Special Kids and palliative care that day. Palliative Care Being referred to palliative care for a child is terrifying. Part of you starts thinking about worst case scenarios — more than before —and trying to read into everything they say, every time you see them. As if some sudden change might have occurred that you don’t know about. But actually, palliative care for a child is very different than for adults. My experience tells me that normally an adult is put into palliative care when they have a short time to live and next to no quality of life left. The teams’ job then is just to keep them as comfortable as possible and enable as many last minute moments with their loved ones as they can. Hours, days, perhaps weeks and months — but never years. Not so with children. The Team The team, at Royal Children’s Hospital Melbourne, is headed up by a consultant doctor, with only a few other doctors on the team, and mostly registrars, so not really newbie doctors. There are nurses, who don’t often change. They also have occupational therapists. We had a nurse and a doctor who were our primary team, though we got to know everyone. They came to our home for our first appointment; we sat together in our lounge room. I remember my one burning question being “how does a family pay for a funeral?” In my mind at the time, that seemed to be the most perplexing problem. They looked almost a little startled by the question and they said to me, “We’re not here to talk about that. We can if you want, but we don’t have to. Not yet. We’ve got lots of time.” They went onto explain that they are there to get to know us. To get to know Matthew, how we work, what things are important to us. When things get really difficult, they won’t be strangers coming in and taking over. Their presence is reassuring and not a sign that something awful is about to happen any moment, so we know what to expect from them. They don’t have to talk about Matthew’s death and dying every time they visit. In fact most times it’s the opposite. They left us a book; it was huge, with all kinds of resources and covered lots of different things. It was the world’s most morbid coffee table book. It looked kind of nice on the outside and you couldn’t tell what it was. But it sat on our coffee table until we moved. I think I opened it once, but I couldn’t bring myself to read it. Not until December 2018, years after we received it. They Got to Know Our Family I took the book into the hospital with me one day. The amazing palliative care team who we had now known for around four years, noticed right away. They had spent all that time getting to know us. The team knew and supported us when Shane had behavioral issues from moving. They knew when Mackenzie started to get too big and bored to spend all week with me in the hospital visiting Matthew. We received some respite funding when things got tricky and we still needed to get away. They even organized a nurse so Matthew could be put on a leave pass from hospital to attend his own 5th birthday party. Palliative care took responsibility to make the call that the birthday party should go ahead instead of being postponed. Palliative Care for a Child Isn’t About Death Part of their roll, providing palliative care for a child, is to help their patients and their families get the most out of life. To get their medications and treatments right, not from a medical point of view, but a enjoying life point of view. For us, they didn’t make the primary decisions for treatments and medications in the hospital or even at home — Matthew’s pediatrician was very invested in his care — but they did challenge them if there was a way to make things better for him, or even us. They sent the music therapist to Matthew when he was in the hospital, and she would play for Shane and Mackenzie as well. We even had an art therapist once who did a session with Shane. They knew Matthew really liked music. They knew he liked to be stroked under his chin, something he could enjoy regardless of what he was plugged into. Palliative care accessed funding from TLC to provide us with finger printed jewelry from a company that would keep the mold on file permanently. Just in case you lose it. They loved to help create space for good memories. Sometimes the Sight of Them Was Painful Matthew’s pediatrician made a joke with Matthew’s palliative care doctor that every time I saw her, she made me cry. It wasn’t her fault. Yes, I am sure there were times they reminded me of the weight of what was happening. That we knew one day things would not get better. Other times it was the weight of what was happening at the time. The frustration of what was going on. I was sometimes so relieved to see them and talk about what was on my mind that I would cry. They Were Our Biggest Advocates At times if I couldn’t get anyone from the medical teams to listen. Or there was something I couldn’t put my finger on, and it was the palliative care team that took us seriously. The “thing” didn’t even have to be medical. It could be something about our lives that was being impacted by the way the medical team wanted us to manage a medication or a treatment. It could be that the medical team had stopped testing for things, because they couldn’t recognize the effect a new issue was having on Matthew, because they didn’t know him as well. There were many times I was so close to busting my boiler at the medical team (and perhaps looking back I would have been emotionally better off if I had) b,ut I was able to hold it together knowing I could get palliative care paged. The team would come and I would debrief with them, get my concerns heard, and they would go and work behind the scenes to get answers. They could have hard conversations with teams that I felt unable to have. I could ask them emotionally difficult questions and they would assist me in getting the answers I needed. The team knew that palliative care for a child is not just about the child. A level of consistency sometimes happened with palliative care that we couldn’t get with other teams. Less of the staff changes over every three months, unlike the other teams. So often they were 100 percent the team who knew him best. Palliative Care at the End The palliative care doctor was the one to tell us that we had done everything we could for Matthew. That any further steps we took to prolong his life, would be for our (the team’s included) benefit and not for his. She knew when she told us, “we’re not going to do the next procedure,” we would connect the dots. My immediate reaction was, “That means he has like, less than three weeks to live.” She half nodded, half shook her head, “A couple of short weeks.” Matthew was gone seven days later. No procedure would have changed that. They had kept right on top of his pain. They cut everything from his treatment plan that wasn’t helping keep him comfortable. None of these things came suddenly. It was a gradual process as Matthew indicated what he needed. This was more traditional, but it was still clearly palliative care for a child. The team visited often that day. I spoke to them a couple of times over the weekend (he died on a Monday). It was palliative care who alerted me to signs that things might be changing. With their support I felt prepared. The Aftermath They were not actually present when Matthew passed away (it was after hours — did I mention they work office hours with an on-call doctor?) So early the next morning, when most of the team arrived, Matthew’s body had already been moved. We stood in his empty room in the hospital. They explained there were many options available to us for that day. But also that we didn’t have to make any decisions right now. We had as much time as we liked. They called us often in the following days after we left the hospital. They attended the funeral, at our invitation. The doctor recalled one of my fears along the way would be that when Matthew was gone, my whole life would just disappear. They talked me through that. One of the nurses met me the first few times I visited the hospital, to check in, ask questions and make sure I really was OK. Navigating what was to come was a little easier because of their gentle heads up. They were even able to provide a little bit of funding for the funeral, again also directing us to TLC for more assistance. We Are Totally Grateful to Palliative Care As I ponder and plan my meeting with them and I reflect as I write, I am so thankful I had this team to support our whole family. I know of families who decide not to have them involved in their care, as it’s too painful. They feel like there is too much focus on death. This wasn’t our experience. I know other families who found retelling their stories to palliative care after they had explained it already to the other teams taxing. Matthew was very complicated. Sometimes in conversations with palliative care a new detail would come from the conversation. Or a change that only palliative care would think of and it would make a massive difference to him. And to us. We’re so glad we had them. If you’ve got a story you’d like to share about palliative care for your child, I’d be honored to hear it. A version of this article was previously published on the author’s blog.

    Community Voices

    When we ask you to stay home, please listen!

    It is hard to not feel anxiety in the face of the Covid-19 outbreak. The information we are getting about the virus is changing all the time and new regulations about where we are allowed to go or who we can see changes just as fast. Governments have been urging people to stay home, with some actually using police enforcement to make sure that people are following the regulations.

    Yet, today I still hear about people gathering in places like beaches or keeping their restaurants open despite the rules. And to be honest, it makes me incredibly angry.

    My beautiful daughter Daisy was born with Microcephaly, a rare condition that basically translates to small head. There is a wide range of issues that can appear, some being fairly mild to others being very sever.

    And Daisy had the sever type. Her brain did not develop in the same way as the rest of us, causing her to have no independent movement, difficulty swallowing and sever developmental delays. She was the love of my life- bringing me incredible amounts of joy, even amidst the difficulties of taking care of her. She was medically fragile- with her difficulty swallowing, her lungs were often affected by bits of food or water going down the wrong tube. When she got a cold, it took a long time for her to recover and every winter season, we stayed close to home as to avoid germs.

    But we couldn’t shut down completely and in the winter of 2015, Daisy contracted three different colds in a row, the last one landing her in hospital. She got RSV– Respiratory Syncytial Virus- which is actually very common as most children get it at some point, normally just presenting as a bad cold. But for Daisy, this incredibly common virus, was deadly. After two weeks in the hospital, Daisy passed away on her fourth Birthday- Jan. 3 2016.

    Despite our best efforts to keep Daisy safe- the entire family got the flu shot each year- a common virus which passes around schools all over the world, killed my daughter. It was a regular year, with the regular colds and flus going around. But because of my daughter’s medical fragility, she got something that she could not fight and we were forced to say our final goodbyes.

    The fact that Daisy probably got this virus from a schoolmate, kills my soul. She loved school and I never would have taken her out just because she could get a cold. BUT, if there was an outbreak of a new unknown virus, I would have been one of the first to isolate. And it would have been hard and I wouldn’t have liked it, but I would have done it.

    The problem would be that, I wouldn’t be able to completely cut myself off from the world. My husband would have still gone to work. I would still need to go to the grocery store. And if either of us unknowingly came into contact with a virus, we would have easily passed it on to our baby girl. Hugs and cuddles were big in our family. And is something I long for today.

    So, with the news about Covid-19 and the rapid spread, I’ve been thinking a lot about my Daisy girl and what it would have been like if she were still with us. It would have been doubly scary with her here, so though I miss her every second of every day, I am glad I do not have to worry about her safety.

    But I do worry about the safety of others. For those who think this virus is no big deal or think that they are healthy so why should they worry- please, please listen when we ask you to stay home. It is not for your safety that we ask this of you. It is for the safety of those who will not survive if they are infected. Just because you do not think you’ll be affected by this virus doesn’t mean that you cannot spread the germs to people who would. We shop at the same grocery stores; we go to the same pharmacies. So, I beg you, if you are able to stay home- STAY HOME! If not for you, then for Daisy.

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    Community Voices

    COVID-19: Use Your Head and Your Heart

    COVID-19: Use Your Head and Your Heart

    As a former ER nurse, I can assure you that I do not have an irrational fear of germs. As a mother I have always avoided over-sanitization because I recognize that exposure to mild pathogens helps the body develop a healthy immune response. (If my children were immunocompromised I would be singing a different tune.) Living under a perfectly-disinfected rock does more harm than good! Generally speaking, I am fairly relaxed about bacteria and viruses and their transmission.

    I am also a mental health warrior; I have battled Anxiety & PTSD for most of my life. I am incredibly high-functioning, at least on the surface, so most people – aside from my family and close friends – are completely blind to my struggles. Does that mean my problems aren’t real? Absolutely not! It simply demonstrates that outward appearances are a poor method for evaluating the experiences of others.

    COVID-19: Those at Low-Risk

    As far as I am aware, my immune system is functioning adequately. If I were to contract

    COVID-19 I would likely recover without facing severe complications or hospitalization. I am 31 years old, I do not have high blood pressure, diabetesor a clotting disorder. I am not receiving any kind of immunosuppression therapy. I also live in Ohio – the state that has effectively set the standard for all efforts to flatten the curve. For these things I am grateful!

    Children also demonstrate remarkable resilience in the face of the COVID-19. Yes, kids have died from it, but some degree of mortality is to be expected with any virus that reaches this degree of prevalence. As a parent who has lived through a nail-biting PICU stay when our newborn twins contracted RSV, however, I can tell you that my Anxiety about COVID-19 does not primarily revolve around concerns for my immediate family.

    COVID-19: The Vulnerable

    According to the Centers for Disease Control and Prevention (CDC 2020) those with preexisting medical conditions such as lung disease, diabetes & heart disease are especially prone to developing severe illness when exposed to COVID-19. Advanced age, and the physiologic and immune changes that accompany it, is a characteristic of a significant percentage of those who lose their lives to this virus.

    Immune Systems: Don’t Judge a Book by the Cover

    While factors such as age may be visible to the naked eye, the vast majority of conditions that cause impaired immune responses are invisible to the naked eye. Rheumatological conditions such as lupus, rheumatoid arthritis and ankylosing spondylitis may appear “normal” to those who pass them in the street. Their physical presentation does not negate years of steroid usage and other treatments used to suppress inappropriate immune responses.

    Asthma and other types of lung disease can also be subtle during when they are under control. Being functional in day-to-day life does not mean that a person’s lungs are equipped to handle the blow of severe respiratory illness! While children may not be at increased risk, those with underlying conditions are still less likely to bounce back from COVID-19.

    Organ transplant recipients and those receiving cancer treatment may not appear sickly – but that does not mean they are not at a significant disadvantage during a pandemic. Heart disease, often a silent killer, and diabetes cannot be detected and evaluated with a single glance. You simply do not know what risk factors are causing others to be fearful.

    Some of Us are not Ready to Say Goodbye – Again

    I am a stillbirth survivor. After losing our son last September I became acutely aware of the brevity and instability of human life. My heart was broken. After months of grieving and soul-searching I gained a deeper appreciation of the time we are given.

    Many of the people that I love, whom I feel blessed to still have in my life, fall into these high-risk categories. My mother, who has lupus and other chronic health issues, has been on immunosuppressants for over 30 years. My grandmother, who lives the healthiest lifestyle of anyone I have ever heard of – never touched a cigarette, had a drop of alcohol or even eaten a bite of meat – falls into several of the highest risk categories. She has congestive heart failure, COPD and is chronically anemic, on top of being elderly. My husband’s grandmother, who has diabetes and heart disease, recently started chemotherapy for brain cancer.

    I am strong, but I am not ready to attend another funeral for a person that I love – especially if there are measures that can be taken to reduce the risk of exposure. I know that I am not the only “healthy” person who feels this way.

    Use Your Head and Your Heart

    Buying into the hysteria won’t make things better, but neither will belittling the concerns of others. Before you judge someone else’s reaction to the COVID-19 pandemic, take a moment to think about all the things you can’t see from their perspective.

    Anxietydepression and a host of other mental health issues can magnify the intensity of a person’s response to this outbreak.

    This does not invalidate the way that they feel.

    Someone may be worried for the same reasons I am: they care about the lives of others who might not survive.

    It is 100% okay to care about other people; in fact, this is a good thing!

    They may have a condition, or several, of which you happen to be unaware.

    That is not your business – they do not need to justify their concerns.

    They may be a healthcare worker who fears that wartime triage protocols could become a reality here.

    Be grateful for those who are on the front lines fighting this pandemic.


    Whether you are as cool as a cucumber, or on the verge of a mental health crisis, you still have the ability to make a positive impact.

    If you feel the need to share information on social media – stick to facts and useful information. Avoid making sweeping, sensational statements that may come across as harsh, condescending or dismissive. Knowledge is power, and you can help empower others by setting a good example.

    If you are clearing the shelves of supplies at the store, take the time to make some care packages for those who truly shouldn’t be leaving the house. Use your stockpile to put together toilet paper, hand sanitizer & basic groceries – then leave them on the doorstep for elderly and disabled members of your community. (But please, don’t ring the doorbell and expose them to any germs you might have!)

    If you have baby wipes, diapers, formula or other supplies that your child no longer uses: pack them up and send them to a family who has an infant dealing with chronic health issues, or give them to your neighbor who has a newborn and is afraid to risk the crowds.

    If you are going stir crazy and home with your kids – take a moment to be grateful. Appreciate the roof over your head, the time you are spending with your family and be thankful that you are all in good enough health to be there. Yes, there will be chaos (and shouting and tears) but realize that you are protecting the most vulnerable lives by practicing social distancing.

    Everything is overwhelming right now. New information is flooding in on a daily basis. Recommendations and advice will change. Watching the news may be frightening. No matter what your emotional response is right now – you can still be a good person.


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    Elizabeth Gerlach

    Please Wash Your Hands Year-Round — Not 'Just' Because of Coronavirus

    Does the thought of a fever, runny nose and/or congestion scare the bejeezus out of you? How about the coronavirus? If so, you’re not alone. Join the club. According to the World Health Organization (WHO), coronaviruses are a family of illnesses ranging from the common cold to more serious illnesses like Severe Acute Respiratory Syndrome (SARS-CoV). Early signs of COVID infection are the same as other cold-like illnesses: Dry cough Fever Shortness of breath Severe symptoms may include weakness, lethargy and GI issues. A novel coronavirus (which we’ve been hearing about in the news) is a new strain of coronavirus that hasn’t been identified before. So far, the new strain of coronavirus has 60 total confirmed cases in the United States, with six deaths currently reported. Though so far children appear to be less affected by the coronavirus, as a parent, the outbreak still scares me a lot. And while I’m glad to see so many individuals and news outlets sharing information about how hand-washing can prevent the spread of viruses, I wish this was something people were aware of all year long. Here’s why. In 2016, I cradled my young son Benjamin as his heart stopped beating. He was not yet 4 years old, but had lived with a chronic respiratory illnesses for the last year and a half of his life. He was in and out of the hospital regularly, averaging about six days per month. My babies were just in their first year of preschool and now in contact with germs they hadn’t had to contend with before. And every time I saw a runny nose or early cough, I frowned. Because I knew what was coming. More than likely, Benjamin would end up in the pediatric intensive care unit (PICU). I never expected him to die though. I don’t think any mom expects that. Not surprisingly, losing him has affected how I react and care for his brother and sister. My worry is amplified and my actions are more extreme — even though I know my other two children have stronger immune systems than Benjamin did. Even though I know sore throats and stuffed up noses are all part of the inescapable reality of having school-aged children. Even though I know they will be OK (hopefully), it still scares me and makes me nervous as if I’m anticipating the loss of another child. According to Columbia University Medical Center pediatrician Edith Bracho-Sanchez, hand-washing can decrease transmission of viruses anywhere from 30 to 50%. This statistic has particular significance for parents of immunocompromised children. Many children with compromised immune systems, like my son Benjamin had, cannot easily fight off simple infections or viruses. Their immune systems may not be able to fight off serious or even minor illnesses. A standard cough or runny nose for a typical child could easily mean a PICU stay with breathing assistance for another. Last weekend, my daughter and Benjamin’s triplet sister had a high fever of almost 103 for two days. She was lethargic, sleepy and pale with ruddy cheeks. Her eyes were distant. My husband was prepared to make a very familiar late-night trip to the ER while I plugged in numerous searches into Dr. Google trying to figure out the best choice and course of action for her. Google Search… “7yo, girl, 102.7 fever, when to ER” Google Search … “7yo, sleepy, girl high fever, ER” Google Search … “7yo lethargic girl with high fever” All indicators and information said to stay home and continue doing what we were doing. This doesn’t make it easier or ease any minds, especially for a family who has already lost a child to respiratory virus. We stuck it out, we stayed home, we gave her fluids, we let her sleep. I checked her saturation and temperature periodically throughout the night. We made it through the weekend, and she was back to school on Monday. But here it is four days later, and as I’m typing this both are coughing with sniffly noses. Thankfully there is no school today (Friday) and we will stay homebound trying to take it easy and recover. And I may or may not be wiping down all surfaces with bleach. Children at school are in close quarters. They share desks, book and laptops; they touch each other; they use the same pencils and erasers; they eat together and wrestle at recess. Teaching children proper hand-washing techniques and communicating the importance of it is so critical, especially since this is the number one way to prevent the spread of germs. It can be the difference between life and death for immunocompromised children like my son Benjamin. I urge you, please practice (and teach your children!) diligent hand-washing, not just during an outbreak like the coronavirus — but year-round. Concerned about coronavirus? Stay safe using the tips from these articles: Which Face Masks Prevent Against Coronavirus? How to Make Your Own Hand Sanitizer 8 Soaps You Can Use to Help Prevent the Spread of Illness Coronavirus and Chronic Illness: What You Need to Know 10 Face Masks People With Chronic Illness Recommend

    Community Voices

    Why I Live in Quarantine With My Micro Preemie During Flu Season

    We’re in the midst of the most wonderful time of year: the leaves are changing, snow is falling and there is a crisp feel in the air. Families will travel far distances to be together for holidays, and I will be at home on my couch. Why? Because I have a micro preemie. We spent 256 very long days in the hospital. My daughter, Lily, fought for her life countless times, and as a result is considered “medically fragile.”She has a tracheostomy to treat her primary diagnosis, bronchiopulmonary dysplasia, or chronic lung disease of prematurity. The life-saving machines that Lily required in her earliest days did a significant amount of damage to her lungs. They are still extremely weak and Lily is very susceptible to infection. In the coming years, even if she no longer needs her trach, we are instituting a quarantine during flu season. Lily, my husband and I will spend the next six months in isolation so as not to expose Lily to any germs. The common cold, a small stomach bug, or the sniffles in a grown adult can result in a hospitalization for Lily, or even possible death. There is a misconception that babies should be exposed to germs to strengthen their immunity, but that does not apply to preemies born before 32 weeks gestation. Our rules may seem very strict to those unfamiliar to our situation, but we have watched way too many micro preemies and trached babies succumb to illness because someone was careless. We will live off of food delivery services, mail-based subscriptions for household items and grocery store drive-thru pick-up. Lily’s monthly specialist appointments will be done via video chat and email. Lily’s flu and RSV vaccines will be administered at home. We will not allow anyone in our home who has been ill, been exposed to anyone who is ill, or has children. Our sanitization protocol is extremely extensive and we mandate that everyone who enters our home (nursing staff, developmental therapists and grandparents) be up-to-date on all vaccinations including the flu shot. We forego trick-or-treating,  family Thanksgiving, holiday parties with friends, work Christmas parties and New Year’s Eve so as to limit exposure to illness. With all of these new rules come a mixed bag of emotions. I am terrified that Lily will have to be admitted to the hospital. The trauma from our eight month inpatient stay is very fresh in my mind, and I will do anything that I can to keep Lily home. Isolation will be difficult for our mental health, and we will greatly miss our friends and families during this time. We worry that we will be “forgotten” and life will move on without us because we can’t be physically present. At the same time, having Lily at home is a privilege that we would never take for granted. There were many, many days that we were unsure that she would ever come home, so few years of solitude seems trivial in exchange for my daughter’s well-being. This is not forever. As Lily’s body grows, so will her lungs. We hope that one day she will no longer need her trach and she will be able to run, play and attend school with her same-age peers. Our days of isolation will one day be a distant memory. For now, the safety of my child is the single most important thing in my world. I will not cater to anyone’s feelings at the expense of my child’s health. Those who love us will understand, and those who don’t can kick rocks.