trials and triumphs – Patrick Hoopes

Transplant day 2,434: Explaining why

“A child born to another woman calls me mommy. The magnitude of that tragedy and the depth of that privilege are not lost on me.”

Have you seen that meme? It captures my feelings towards birthmothers in general, and Patrick’s birthparents in particularly so perfectly. I feel it to the core of my being.

It also only captures a fraction of the unrepayable debt of gratitude that I owe as a mother.

Another child was lost young in an accident, and that family chose in the face of unimaginable loss to give a piece of the life of their child to mine through organ donation. That is tragedy so vast and privilege so profound I struggle to comprehend it.

The pandemic has pushed this truth to the forefront of our awareness. “Patrick’s a transplant recipient” is a phrase we say so often it sometimes loses meaning. It tells you he has health problems that require extra accommodations. It may even tell you his health is fragile or that he’s been through a lot of trauma.

But in our house, lately, we’ve had a lot of discussion about what transplant actually IS. See, Patrick received his transplant the day he turned 6. He was too young and had far too little language and understanding to know what was happening to him then. But there’s nothing like a pandemic to provide time for questions and answers.

Patrick has some fairly distinct memories of his recovery. The staples itched. The stitches were blue. But many of the memories are fading. (“Mom, what’s an ostomy?”) He’s twelve and a half, more than double his age at transplant. Early childhood memories fade and our minds protect us from trauma. He remembers feelings, but very few details.

This week, he found a memento of transplant: a pillow in the shape of a liver with the hospital logo emblazoned on it that was signed by many of the ICU staff. Patrick loved writing and names, so it was a way he connected and found peace.

I can’t put faces to most of the names anymore. But as we talked, I pointed out how many of them had written their specialty and that could tell us who they were. Nurses helped with pain and meds and dressings and keeping him comfortable. Respiratory therapy would come to make him take deep breaths and refill his lungs, since it hurt too much to breathe, let alone willingly cough. And child life made sure he had toys and volunteer visitors fun activities and the occasional magic moment.

One of the signatures was from the physical therapist. She’s one of the only faces I clearly remember. I told him how she came every day to help him learn to walk again and how, at first, that was very hard because it was so painful. (I also told him about how much he loved her because she would hide Blues Clues in the halls for him to find.)

That led to talking about his scars.

Patrick had a vertical incision that ran the length of his abdomen that was closed with staples and, as a result, he has a very impressive scar. We talked about what he remembered about how that looked and felt. Then he turned his attention to other scars. He has all kinds: from big to small, from straight to round and some that are curvy. Some are surgical, some from his birth defect, and others from accidental injuries. And he made me help him inspect his entire body and tell him how each one got there. Sadly, there really is a scar and a story for almost every appendage.

“Why” has been a big topic of conversation lately. We’ve had to answer a lot of “Why’s” about the COVID precautions we are taking. And a lot of why’s about other people who are not longer taking them. And in the middle of one of those “why” we still wear masks when others don’t, it occurred to me that Patrick knew “transplant” as part of his identity, but didn’t understand what the word meant.

I’ve been thinking that, since we moved and so much time has passed, many of our friends, colleagues, classmates and fellow congregants don’t know the why and how either. So, since we’re already opening the emotional pandora’s box by explaining these things to Patrick, I thought maybe I’d tell you what I’ve been telling him.

Let me take you on a tour of his scars.

(Just a heads up, Patrick is very private about his scars and doesn’t like to talk about what he’s been through.)

First, there’s the short little horizontal one that runs to the right of his belly button. This one’s from his gastroschisis. Gastroschisis is a birth defect where the abdominal wall doesn’t close and the intestines develop outside of the body. This was the start of his troubles. Patrick had complicated gastroschisis. The intestines twisted and died. He was born with a small hole in his belly. The surgeons did a quick exploratory surgery where they found that his entire small intestine and most of his large intestine were missing. They placed some drain tubes (since his intestine was too short and too narrow to reconnect) and closed the hole surgically. They also placed a PICC (peripherally inserted central venous catheter) to give him nutrition by IV as his digestive system was completely non-functional.

A few weeks later, those drains weren’t working. So they pulled the end of his duodenum to the skin’s surface in an ostomy (which means a hole in your body that accesses an organ) and placed a feeding tube in his belly. (That tube is still there, used for meds, not food.)

We were granted guardianship and flew him from Michigan to Utah by air ambulance. A short time later, he developed his first central line infection while still in the NICU. He has a scar on the back of his right heel where a busy nurse missed that the IV antibiotic being given there had caused the vein to burst. This caused a nasty IV infiltration wound. He also earned his first broviac line scar. (Broviac lines are also central lines, they run to the heart.. but they go in a tunnel through the chest. Patrick’s chest and neck have several pock-mark looking scars from broviac lines.)

The next 5 years were spent waiting for transplant. Beginning in July of his first year and continuing for the next year, he seemed to have constant sepsis. We’d clear one infection, and two weeks later be back in the E.R. with another. It was terrifying, especially when yeast started to grow inside his body. Yeast is sticky and difficult to kill. The antifungals used to treat it are harsh. Eventually, their toll was too much for his little body and his heart stopped.

This left scars you can’t see in the form of an anoxic brain injury, but also a new little one in his thigh from a femoral arterial line. It also left some emotional scars for all of us. We were fortunate that, because the amazing team at the hospital that day performed such excellent CPR, he was revived and has such minor damage. Still I know what it is to have my child stop breathing in my arms. And I know what it is to have arms ache for a baby that isn’t there. We live with the effects of that day constantly.

At 9 months old, Patrick’s first transplant team said they didn’t want him to have an ostomy anymore. So a surgeon here in Utah connected his duodenum (the segment between stomach and small intestine) to his large intestine. That incision was a small vertical one next to his belly button. It left his belly looking like a star and we lovingly called him our star-bellied sneech.

Playing in a hospital crib after reanastamosis

Over the next 5 years, he had lots of lines, another surgery, a couple of liver biopsies, and significant scarring inside his major blood vessels from his chronic need for total parenteral nutrition and the accompany central lines. His veins became so scarred that we though he might lose access to IV nutrition and starve, but the interventional radiology team in Nebraska managed to restore access through a very risky procedure than passed a needle tipped catheter up his femoral vein, through his heart and out his jugular.

He had IV pumps in a backpack that he took with him everywhere he went that provided him with nutrition in the form of TPN and lipids. Not having an intestine meant a chronic diarrhea and vomiting, too, so we had one more pump for IV hydration fluids, and the occasional extra pump running broad spectrum IV antibiotics. We carried a diaper bag full of saline and heparin syringes and emergency kits, along with an epi pen (he had several serious food allergies) everywhere we went. We were pros at swapping out broken IV tubing, performing sterile dressing changes, and clearing air in line issues in the dark without waking the child the tubing was attached to. I knew every creaky spot in the floor and could dance through the room without a sound, kind of like a master criminal weaving through security system lasers.

First day of Kingergarten, with his TPN pumps in the backpack

We kept our GI and the emergency room on speed dial. We knew every member of the resident class at Primary Children’s spanning several years. (They made a point to come visit us when they knew we were there.) And I spent more time talking to our infusion pharmacist and insurance case manager than most of my friends.

Meanwhile, Patrick grew up, went on many adventures, attended preschool, started kindergarten, and was granted a wish.

Patrick’s wish was to visit Give Kids the World Village and Disney World in Orlando

At last, Patrick received his transplant. He not only needed an intestine, but also a liver due to damage from the IV nutrition, and since the vasculature is all one package, that came with a new pancreas, too. Remembering how HUGE an intestine is, it might make more sense to know that they also removed his spleen to make space along withhis gall bladder because that way they don’t have to worry about gall stones later. They also did a gastric bypass to help food move into the new anatomy of the gut.

As I explained to Patrick this week, they pretty much just took everything out so it was empty inside, and then put in the new organs and sewed all the parts back together. And that is a LOT of parts when you consider all the blood vessels, nerve endings and splicing back together his lymphatic system.

Transplant left the biggest scars: the long one down his tummy with the frankenstein-like staple marks and the one the size of a silver dollar where he had an ostomy for biopsy purposes.

That brings me back to the “why” questions. Because transplant and the journey to get there are why we do most of what we do.

So here’s a question we get a lot.Why are transplant patients more at risk that other people? Doesn’t a transplant cure them?

This answer was one they drilled into us. When you’re being considered for transplant, they sit down with your family and they go over all the risks and precautions that you’ll be living with after the procedure. You also commit to a lot of things to protect the graft like avoiding contact sports, not swimming in rivers and lakes, and being careful about diet.

And then of course, there are the meds. To keep the body from identifying the transplanted organs as a threat, transplant patients must take immune suppressants. Twice a day, every day. For the rest of your life. These have to stay at a constant level in the body.

At first, immune suppressants have to be at a pretty high dose. Eventually, as the body gets used to the new organs, that dose can be reduced. However, since Patrick received 3 organs (including the second largest organ in the human body) his minimum dose is still high compared to, for example, a kidney transplant patient.

Still, with a lower dose, Patrick has been able to live a pretty normal life. He could attend school, except when there was an outbreak of illness in the classroom. (His IEP provides for home learning under these conditions.) He could go to church and play adaptive sports and ride roller coasters. Granted, he and I spend pretty much from November to February sick every year because he catches everything he’s exposed to. Transplant patients get sicker and stay sicker longer, but eventually, he gets over most bugs.

But COVID… it’s a different type of virus. It sends the body’s immune system into hyperdrive. That’s what makes it so deadly. Can you imagine the effect of that in a transplant patient?

I wondered if perhaps it was my imagination inflating the risks at first. However, a few months back as they were just about to approve the pediatric Pfizer vaccine, I had the opportunity to join a webinar where researchers shared their current data about COVID, the COVID vaccines, and transplant patients. And some of their numbers were rather concerning.

First, they found that although the general population has a better than 99% chance of surviving the virus, among transplant patients, the death rate is 10%. Those odds are scary.

Even more concerningly, Johns Hopkins, in the absence of data from preliminary studies into vaccines, did a study where they measured the antibody response of transplant patients. As the researcher said in his presentation, they discovered that “we have a problem.” Only around 40% of transplant patients had any detectable antibodies following a first dose of any of the vaccines. After the second dose, only 56% did. They also found that there was a high rate of patients who resumed normal activities after they were “fully vaccinated” who went on to contract the virus.

You know when they say that most people who are vaccinated don’t catch the virus, don’t pass it on to others, and certainly don’t need hospitalization or die? Well, guess who that small percentage who do are? Yup, the people with compromised immune systems.

So EVERY communication I have with Patrick’s transplant team or GI doctor ends with a reminder. “Act like he’s not vaccinated.” “Keep following precautions.” “There’s still risk.” Just this week, Patrick’s GI ended an e-mail about lab results with “don’t let down your guard.”

6th grade was all online, supervised by Max

The thing is, everyone is ready to be done with the pandemic. WE are ready to be done with the pandemic. In fact, the more our community lets down their guard, the harder it becomes for us.

But cases are rising across the world, across the country, and definitely in the state where we live. Vaccination rates are low here and children, though not at risk of severe disease, are still carriers. Add to it that the Delta (now Delta+) variant is more contagious and more deadly. Despite our best wishes, statistics show that the virus is no longer in decline where we live.

Our alternate field trip to the bird rescue with an awesome duckling named Vinnie

We made a commitment years ago. We made it when we adopted him, again when we listed him for transplant, and again when we accepted the offered organs. We promised that we would follow the medicine, keep the protocols, and make the sacrifices to keep him alive.

Patrick’s life is a miracle. Many times over. And that miracle has been contributed to by so many people. His birth family, the NICU teams, his nurses, and pharmacists, the surgeons and infectious disease doctors and interventional radiologists and IV team who responded to emergency after emergency. The nurse who performed CPR and the code team who helped to revive him. The therapists who taught him to walk and talk and write. The family and friends and strangers who helped raise money for his transplant expenses. And most of all, the family who trusted their memory of their child to the future of mine.

In coming to understand transplant, Patrick’s come to know that he has an organ donor. The other night, he was asking me about “the other kid.” Health privacy means we don’t know a lot. But often, when I’m tempted to take some risk, Patrick’s donor and his family cross my mind. I can’t bring myself to take chances with such a sacred gift. Especially when there are so many waiting for donors who will not live to be matched.

We live with a miracle every day. But faith without works, as James wrote, is dead. So we are doing our best to do our part and be patient until we get the all clear from the miracle workers we’ve grown to trust to keep Patrick safe. Some of them are like family, so when they say wait, we listen.

Masking up for physical therapy at Shriner’s

We are hopefully trusting in the promise of vaccines. I was able to enroll Patrick in that same Johns Hopkins vaccine antibody study for kids and we’re watching to see signs of his body reponding to the shot. (With caution, as every doctor emphasizes to us that antibodies do not mean he can’t get sick.)

We are cautiously beginning to dip our toes in. We are visiting with fully vaccinated (and still reasonably cautious) family. I’ve invested in KN95 masks that fit Patrick and am letting him go to in-person physical therapy and occasional uncrowded places in off-peak hours, like the library.

We really want to begin to allow loved ones back into our world and are anxiously waiting for approval of vaccines for younger children.

We want to see you again. Right now, we’re limited contact to vaccinated people. So help us out. Get the shot. Wear your mask indoors and in crowds and around us. Avoid risky behaviors.

Be especially careful with your children. Not only can they spread COVID, but there’s an out of season cold and flu season happening as we come out of quarantine and their risk of catching another illness is higher right now. Please stay home if you have any signs of illness! (Even when we were really counting on you.)

This is an awkward time right now. For everyone. But especially for us. With the political climate and the need for extra caution, we sometimes have to turn down invitations or even walk away when risk is too high. If one of these awkward moments happens with you, please know that we don’t mean to cause offense. We’re not trying to make you feel guilty or sway your choices. (Though we really want you to be safe.) It’s just, with all other precautions taken away, we are needing to be a lot more careful.

We appreciate your patience, your love, your caution, your efforts to keep us included and show us we are remembered. We are eager to be with you again. And we are THRILLED that vaccination has brought some of your back into our lives in person. Patrick’s very best days are when we can say “So-and-so has had their shot. Let’s go do something together!” Hoping for much, much more of that soon.

Some thoughts on pruning and patience

I just spent the morning cutting the blooms off of the flowers in my garden. It always looks like a bit of a tragedy. But today it is raining and next week our state will be facing record heat again as a record heat wave and drought covers the western US. If my plants are going to survive, they need to be spending their energy on developing roots and leaves, not flowers.

It’s taken me time to learn this lesson. When I was a little girl, my parents bought trees for our park strip. They gave one to each child. And, man, I love that tree! I tended it every day. I’d even sit under it and read to it because I’d heard that plants grew better when you talked to it. And then one day, my parents pruned it! I was devastated! I cried all evening. I thought I’d never forgive them for making my beautiful tree look so weak and spindly.

Gardener’s know, though, sometimes for plants to grow, they need cutting. (Especially petunias. If you’ve ever known someone with marvelously bushy petunias, you can bet that that gardener regularly trims their plants. Where you cut one stem, two will grow.)

One of the reasons I garden is that while I work, I get glimpses into the methods of the Master Gardener.

As I look at my life, I can see the pruning moments. Times when I couldn’t understand why I was being trimmed back. Times when it seemed so unfair that my one beautiful little blossom that I’d worked so hard to grow would be cut off. I see now things I couldn’t see then about how I was being helped to grow into something grander than would have been possible without the pruning.

Infertility, for example. I thought I had been thoroughly abandoned by the Lord. How was it that everyone else could so easily make a baby and I couldn’t? Was it because the Lord didn’t trust me? Or that I was somehow lacking? Or was it just that He didn’t care? How could my prayers go unanswered. All I wanted was something beautiful.

But had I not had the experiences of infertility, I would never have been prepared for the more beautiful gift of motherhood I’ve been given. Had I not learned to face my anxiety over doctors, could I really have been up for a life in a hospital? Had I not learned to trust in the Lord’s timing, would we have been able to wait six years for the right transplant donor? And had I not learned to that prayers are often answered in ways we didn’t ask, could I have ever made it through the nights that were carried only by prayer?

A Facebook memory this morning reminded me of the struggle it was to take Patrick on his first vacation. He’d been through infection after infection and in the week prior to our scheduled Yellowstone trip had broken his central line twice, requiring ER visits for repair. A prudent nurse knew about our scheduled vacation and pulled strings to send an emergency repair kit with me and train me on how to do the repair during our second ER visit. Thank goodness she did, because just as we crossed the border into Idaho, the line broke again. We ended up at Eastern Idaho Regional Hospital where they could not find anyone qualified to repair the line. In the end, they gave me a nurse, a room, and sterile supplies and I repaired that line myself before we continued on our way to Yellowstone.

Things haven’t come easy for us, and early pruning gave me strength, flexibility and a healthy dose of righteous submission.

COVID has been another period of pruning. Not just for myself, but for the world. So many of those beautiful traditions and even basic comforts were cut and cast aside. We were left with pretty much just our roots. Home, family, faith.

I’ve been alternately inspired and heartbroken watching the world respond to pruning, having experienced so much myself.

Some have really grown stronger in this time. Staying at home gave us time not just to improve our baking and gardening skills, but also to deepen our roots by spending time as families, developing habits of individual worship, tending to the needs of others, and improving talents and characters.

Others have stayed focused on what they weren’t willing to miss, putting proms and parties as first priority, fretting about what they or their children might be missing. Resisting cutting and seeming to try to glue blossoms back onto flowers

I’ve done this at moments in my life, too. It isn’t easy to let go of dreams, traditions, and those milestone moments. I get it! One of the most difficult things about being a parent to a child with special needs is mourning so many lost milestones. We’ve missed or experienced significant delays in first words, first steps, first friendships, attending kindergarten, primary programs, parades, sleepovers, scout camps. We celebrated most holidays in his first year or two of his life in the hospital. The pioneer day fireworks are beautiful, but not the same, from the patio of Primary Children’s Hospital. And every missed milestone has come with tears. It’s ok to grieve unattained wishes. Some are harder to let go than others. (Missing baptism and priesthood ordination, even though I know that Christ’s atonement covers those who are not accountable and promises them salvation, took me a long, long time to accept and I still am caught by unexpected feelings of loss from time to time.)

But the reason I’m posting is that I worry, as the world reopens, that we’ll rush a return to normal so quick that we’ll lose the gifts we’ve gained over this past year.

In my herb garden, I have to take extra care in favorable weather. Once the cool of spring passes and the warms and sunshine of summer arrives cilantro, basil, and other herbs have a tendency to bolt. The very weather that helps them thrive can cause the overeager plants to grow too quickly, rushing to produce flowers. The problem is, once an herb has bolted, it isn’t much good as an herb anymore. There is no choice but to let it go to seed and start again with a new plant.

The solution? Pruning. During the summer months, herbs need to be regularly cut back so that they don’t blossom. The result is healthy, bushy plants with deep roots, strong leaf systems (and since the flavor is in the leaves, better flavor and harvests for the gardeners.)

I see the world hurrying to make up for what was missed and to put aside (a bit prematurely, perhaps) the precautions and lessons of the last year and a half.

As life reopens, I’m trying not to bolt. Patrick’s 2 weeks post vaccination with some hints that he might be protected by it. It’s too early to say, but we have enough confidence that we’re beginning to spend time with vaccinated family and friends. But I’m trying not to hurry. Not just for the protection that being slow and cautious offers, but because I don’t want to lose the blessings we’ve gained by having all the excess trimmed out of my life.

This isn’t easy. I am SO tired of being at home and so frustrated watching as the world reopens to others how it is closing to us.

I worry that if I don’t keep up with regular pruning, that the master gardener might have some more dramatic cutting back to do.

One other thought.. My pruning this morning included giving a very dramatic “haircut” to a very healthy lily. This lily has enjoyed a privileged place next to a sprinkler. It is thriving there, but unfortunately, it has grown so large that it is blocking the water and preventing it from reaching other plants. Sometimes we’re cut back and it seems unfair because it has nothing to do with our own needs. Sometimes, we need to be cut back to allow room for others to grow.

Anyway – those were my thoughts as I was gardening in the rain this morning.

Being the 1% in a pandemic

At the end of last February, my family was in Disneyland. If you haven’t noticed from this blog, we’re pretty addicted. And Patrick can only safely be in crowds when they aren’t really crowds. So, when our tax return came in, we seized the opportunity to skip school and visit one of our favorite places.

I remember so clearly, sitting in LAX waiting for our flight home, watching news reports about this new Coronavirus that was plaguing cruise ships and had just been detected in the first U.S. case of community spread in Washington state. Seeing people flying in masks. And beginning to realize that may, just maybe, this virus wasn’t contained.

For the past year, I’ve had the thought several times that I should maybe write a blog post describing what it’s like to be a transplant family in the midst of a pandemic. I’m finding myself with a bit of time on a Sunday afternoon, so I’m going to give it a shot.

I remember going out to breakfast last year with one of my friends and her telling me that I was her barometer.. the person she was watching to know when it was time to panic. “Coronavirus” wasn’t a new word to me. I’ve spent the past 6 years following virus trends on the Germwatch website from our local children’s hospital and I knew that, for most people, Coronavirus was a common cold. I also knew that children especially seemed to do OK with this new virus. Still, nothing is simple with a child as complex as ours. So I reached out to Patrick’s transplant team in Nebraska and his team here in Utah and asked them to tell me how I’d know if we reached a moment where I needed to pull Patrick from school.

After all, his IEP has a specific provision that says that during cases of viral outbreaks, he was to be transitioned to a virtual connection to school.

On March 13, I got an e-mail from the transplant nurse coordinator “recommending our patients do not attend school for the next couple of weeks.” It was a Friday afternoon. I e-mailed Patrick’s teacher to let her know we’d be checking him out and need to figure out how he could participate in class remotely. Less than an hour later, in a press conference, Utah’s governor announced a soft closure of schools for the next week. Cleaning out his locker and saying goodbye to his friends was hard.

Unlike most of our friends, this wasn’t our first experience with quarantine school. Setting Patrick up for school just required pulling out tools I already had. I cleaned off a desk in the basement, gathered school materials, and set up a picture schedule.

I thought we were ready. Until an earthquake hit the morning that our distance learning classes were supposed to start. My emergency instincts kicked in. I can pack an emergency go bag in 15 minutes flat. It’s a matter of survival, and I’ve packed a lot of emergency go bags. But trying to think through packing a bag for dual emergencies of pandemic (that was supposed to keep us inside) and earthquakes (which might force us outside) was an overwhelming idea. And I had to try to accomplish this while trying to stay calm for a child who was terrified by the frequent aftershocks. I was so grateful that morning for video classes where Patrick could connect with his friends and talk about what had happened.

At the beginning of the pandemic, half of the voices were reciting “this is no worse than a cold” while the other half urged us to “flatten the curve.” In other words, to do everything we could to limit the spread so that hospitals would not be overwhelmed and our unprepared medical system and supply stores depleted.

I’d seen overcrowded hospitals first-hand already. Waited hours in emergency rooms because they couldn’t find a bed on the floor and then ended up assigned to the surgical unit or some other unusual corner of the hospital because it was where they could find space, and just being grateful that we weren’t in a windowless storage closet turned hospital room like some patients. And that was in just an average flu season. The idea of 1% or more of the population needing hospital care at once, I knew, was a very real and serious danger.

I also was keeping tabs on the pandemic on the website used to track national drug shortages. We learned to follow this site to keep track of shortages in TPN ingredients. It was terrifying to see basics such as normal saline, antibiotics, and albuterol appear on the list as critically low. I saw families in the support group I run trying to figure out how to handle dressing changes when masks and sterile gloves were nowhere to be found. And heard first-hand of nurse friends using a single surgical mask for an entire shift. We’d been hospitalized on precautions before. That idea alone was frightening. The stories out of Italy and New York on the news were terrifying. But the inside picture showed that the impacts were reaching us, even if the virus outbreak was not. I started a hashtag within the medical advocacy community. #sharethehealth .. begging healthy people not to hoard supplies that our families relied on for day to day survival.

We felt shortages in other places, too. I stopped at a grocery store to pick up a prescription on that March afternoon as I brought Patrick home from school. People were panic shopping. Shelves were emptied. And the interruptions in supply chain that came from everyone leaving the workplace and coming home were felt for months.

It was terrifying at first for all of us. But there was also a tremendous sense of community. Out of shared uncertainty came shared sacrifice. We were unified and united during those first weeks, even months.

But as weeks dragged into months, life had to go on. At first, we’d stop in to less frequented stores to look for staples, odds and ends you couldn’t get other ways. But as stores shortened hours and crowds competed for supplies, we couldn’t afford the exposure of our full grocery shopping trips anymore. So we learned to buy groceries online. Early on, the demand was so high that you had to place your orders days in advance. And then you crossed your fingers and hoped that the store would have some of what you needed. Checking over our grocery order and seeing what was missing or substituted was one of the biggest heartbreaks of my week. We lived a lot out of our food storage that spring.

And then there was the challenge of figuring out how to get other things we needed without going into a store. Easter especially took creativity to pull off. Gradually, businesses started offering curbside service. But for some things, I’d simply have to call the store and beg for someone to take my order on the phone and bring it out to me at my car.

We left home so rarely that any excuse to get out was a treat. One week, we all went to pick up groceries at Walmart. This outing could take an hour or more, as the demand for curbside was so high. That hot afternoon, we sat in our car with the air conditioner on. And then, when the groceries were loaded, Brian tried to start the car. The battery was dead. We begged the person next to us for a jump start, but that didn’t work. There we were, in the parking lot of a store that sold batteries, trying to decide if it was worth the risk to go in. Eventually, we decided the safest option was if Brian walked to an auto parts store in the same parking lot. There, he bought a battery and tools, changed the battery, and we made it home.

One of the hardest parts of being the family of an immune compromised child in this past year has been learning to forgive other people’s thoughtlessness. Too many people repeat “only 1% will die” or “only those with weak immune systems.” Well, yup. That’s our son. “This is no worse than the flu.” Well, he spent 2 weeks in the hospital with intestinal bleeding from norovirus. His tonsils had to be removed because of the risk of developing lymphoma when he had mono. And after his last immunizations, he’d had to spend a week at home because his body didn’t have enough white cells to protect him should he develop a cold. Having a liver, intestine and pancreas transplanted requires a high level of immune suppression, even at the lowest dose. And on top of that, his spleen was removed as part of that surgery, leaving him with even fewer defenses.

Distance learning was intense. In the mornings, we’d have online groups with Patrick’s class. There was only one girl in Patrick’s reading and math groups and our families got really close working together. In the afternoon, we’d come upstairs and doing science and social skills groups. Patrick’s teacher was amazing in finding ways to connect with the students. And in between groups, we’d complete work offline. I learned several new tricks during this time. Discovered online manipulatives. Mastered Google Meet and Google Classroom. It was a lot of work for me as a mom. But it was SO much better than any quarantine school we’d ever experienced before, that I was mostly just grateful. Especially because it kept Patrick from feeling alone.

The stress of suddenly losing all my supports (respite care, school, therapy and everyone else who had been sharing my load with me) and suddenly switching to a full-time job as teacher by day and a full-time role as playmate at night took its toll. Stress combined with my own immune suppression led to a case of shingles. Thankfully, because I’d been vaccinated when I was diagnosed with rheumatoid arthritis and started on immune suppression, it was mild.. a few weeks of pain and a lingering numb spot next to my ribs.

By Memorial Day, people were tired of quarantine and risked family get-togethers. And cases started to rise. We knew that eventually, life would have to reopen. Being a republican state, Utah’s legislature rushed and pressured the state into reopening much more quickly than their own plans suggested was safe. People took this as a sign that things were safe, even though nothing had changed. Still despite the rising cases that resulted, we tried to be enthusiastic for our friends who were able to take advantage of the discovery that the virus didn’t spread much outside. But I’ll never forget Patrick sitting at the window, watching our neighbors host a party with several other families.

Our family eventually got used to the routine of all of us being at home together. Yeast shortages and an abundance of time led me to finally learn how to make sourdough. My grandma was famous for her sourdough and I’m grateful and proud that I was able to master this skill. Also, shortages of food prompted Brian to help me expand my garden and learning about canning. We’d already wanted to do this, and pulling it off in a pandemic without being able to go into stores and nurseries was a bit of a feat. To make things harder, everyone was gardening, too. Still, I’ve always found tending a garden to be healing for my soul. And fresh tomatoes and other vegetables in summer made it worth the effort.

We were lucky as far as friends go, though. Patrick’s best friends were also being careful. And they were eager and willing to stay connected. So we discovered how to do video playdates on Facebook messenger and Google Meet. I found a website where you could upload your own gameboard and recreated a few of Patrick’s favorite games so he could play with friends and family. And we started reading Flat Stanley and mailing our own Stanley around the country.

Early in the pandemic, while cases were low, our extended family rented a house together in Colorado near Mesa Verde. I’m so grateful that they were willing to take the precautions to help make that trip safe because it was so good to spend time with them after so much time apart. We didn’t know how long it would be before we could be in person again.

In July, we decided to skip the noise of fireworks on Pioneer Day and take advantage of relatively low transmission in Wyoming. So we took a road trip up to Mount Rushmore. Most of the trip we were easily able to stay away from other people. We ate in fast food parking lots with all the others because dining rooms were closed. We strategically planned gas and potty stops for less crowded stations. By then, wearing masks got fewer odd looks, at least, even if they mostly weren’t worn in rural areas. Mount Rushmore was so crowded we basically ran in, took a few pictures and ran out, but overall it was a happy distanced trip far from other people. Except the hotels.Being around others in the hotels was nervewracking. Some were obviously clean, others more doubtfully so. Staff wore masks under noses or not at all. I brought cleansers with us and we recleaned the rooms and slept on our own pillows. Thankfully, we only spent the nights there. And in the day, we got to see some beautiful parts of God’s creations that were so close to home, yet we’d never explored.

We are no strangers to masks. Patrick wore masks every time he went in public for the first 6 months after transplant. Gloves, too, that we’d take off and wash when he got home. I started sewing us masks before it was the cool thing to do, as I saw families trying to figure out how to extend the life of their masks for dressing changes.

I read dozens of articles and studies looking for the best patterns and materials and finally settled on 800 count sheets as an interior layer and quilting cotton as an exterior layer. This was based on a study done in England as a sort of pandemic planning that compared different materials. Interestingly, that study hypothesized that the two biggest struggles in widespread mask adoption during a pandemic would be 1) comfort and 2) understanding how to wear a mask properly. It was interesting to see that play out in real life. Especially as a certain viral video hoax convinced so many people that wearing a mask would increase their CO2 and cause them to infect themselves with their own bacteria.

It took a few versions for me to figure it out, but eventually I managed some contoured masks with t-shirt yarn strings that went around your head and were adjusted with a pony bead at the back. They are still our most comfortable and most often worn.

But really, we rarely have to wear masks because we are around other people so rarely. There is some comfort in knowing that there is no grey area for you. Fully quarantining in some ways is easier than the decisions others have to make about risk.

Like returning to school. There was no question there. Patrick would join cohort Z, the all online learning option at his school.

But at a school primarily for children with special needs, most of the students chose to attend in person. It’s the best way for most to get the services they need.

And so, Patrick logs in each morning to a live video stream of his regular classroom. His one friend from spring is also at home and they are still in all their groups together. Our families work together on making learning a success and I’m grateful for their friendship and help.

He has an awesome teacher who does so well making sure that the kids who are online know that she cares and that they are a part of the class. We have our awkward moments. At first, we spent a good part of the time looking at the ceiling of the classroom because they’d forget to adjust the camera after tilting it to talk to us.

But, overall, as far as education goes, this may be one of Patrick’s best years ever. 1) He can adapt his learning to his own pace. He’s with the class, but if we need to take some extra time to finish something or take a break, we can. 2) I am entirely in charge of his IEP goals. It didn’t start out this way. The teacher would send us work. But as he and I were working 1:1 on these goals, my teaching training kicked in and I asked to pick the curriculum. I sent the teacher a copy of the book I wanted to use for math and she gave her blessing. Eventually, I took over all the goals. We just report data back and ask for guidance if we’re stuck. 3) We have enough time in the morning. With meds to give and other things, getting to in-person school on time has been a monumental feat. But we are rarely ever late to class online. If we do happen to be running late, he can just eat at the desk. 4) Patrick always has all the accommodations he needs. I know exactly what he’s doing. And especially with math, that he has to learn in a very unique way, I can pull out whatever manipulatives help. Even make some of my own. No more reminding teachers over and over again that they aren’t following the IEP. 5) We don’t have to fight to figure out inclusion. This deserves an entire post of its own. But long story short, P.E. and recess have long been problems for Patrick. But now our P.E. is guided by an amazing adaptive P.E. teacher and done 1:1 or when he feels up to it. 6) He can eat! And eat. And eat. Getting Patrick to take care of himself physically at school has long been a battle. But at home, he snacks when he needs it. He goes to the bathroom when he needs it. He has gone up 3 shoe sizes in the past year! Gained 16 pounds. He is just 5 inches shorter than me now.

There are some things that I can’t wait to end in this pandemic. But the lessons we’ve learned about education are things I’ll never let go. I hope that no healthy but at-risk child ever has to put up with 2 hours a week of “home hospital” education like we had to do after transplant. We know better now.

Another thing I hope never goes back to the way it was is Sunday. Don’t get me wrong, I miss worshiping in person and desperately miss fellowship with my friends. BUT because our church has a lay ministry, meaning most worthy men are ordained to the priesthood, when churches needed to close, we were given permission to have the priesthood-holders in our home (in this case, my husband) perform the ordinance of the sacrament for us.

About a year before the pandemic, our church switched to a home-centered church-supported model for some of our Sunday School lessons. They provided curriculum, but parents were to teach it at home. Well, that has been a life saver. In fact, being able to customize gospel lessons to Patrick’s way of learning. His gospel knowledge, comfort in the scriptures, and faith have been visibly growing, even if it’s still fairly young and innocent compared to others his age.

And to have Sundays be simply a day of rest, worship, and time together is precious.

As cases began to spike, church leaders directed that sacrament meeting be made available via webcast. At first, we were sad to give up the entirely self-paced Sunday we’d gotten used to. But being able to hear news of our ward and listen to talk and see faces, even if we aren’t seen, has been wonderful. Again, this is one of those things I hope doesn’t soon disappear. As we went months without being able to attend church after transplant, I was often envious of those whose wards had decided to make their meeting available to them via broadcast. It’s a little strange to know that others are attending in person every 2 to 3 weeks. But I know we’re not ready to be there yet, and we’re grateful to connect in the way we can. Similarly, being able to join in Sunday classes via Zoom has been great. (I just wish we weren’t always hurried off by Zoom’s 40 minute timeline.)

Another favorite part of Sundays is family chats. My grandfather is 95 and lives alone. My parents also both have medical conditions that put them at high risk. So the weekly Sunday dinners we’ve known all my life weren’t an option. But I worried about Grandpa and others being alone without regular connections. We started chatting on Sundays and I’ve been able to spend more time talking with my siblings than I have in years.

Holidays have been different. Much more low key. We pretty much skipped Halloween. We focused on Patrick’s birthday instead. We rented a whole movie theater for the three of us just to see a movie. We had a video birthday party with his friends. They played Kahoot and chatted. We bought the candy we wanted for ourselves, put a sign on the door, and hid in the basement from trick-or-treaters. Honestly, it was so nice not to have the birthday rushed through so we could get to the trick-or-treating that, quite honestly, just stressed Patrick and me out.

On Thanksgiving, we hosted jackbox games with our families. And for Christmas, we did gift exchanges and cookie exchanges over video. We had a delightful 2 day road trip getaway to go view the Christmas Star (convergence of Mars and Jupiter) at Goblin Valley in some of the darkest sky country in the country.

Christmas Day has always been hurried for us. Too busy rushing between different families. Spending the day at home playing with toys with a few video chats with family was SUCH a treat.

Reinventing traditions has taken some creativity, but has had such great rewards.

That’s another odd thing about being the 1% during a pandemic. I watch so many people worrying about what they’re missing. They can’t imagine letting go of traditions. They fret about their teenagers missing dances and socials. Their kids missing extracurricular activities. When schools don’t offer them, they create them on their own, despite the risks.

And it makes me sad.. because what they don’t see is that in trying not to miss the old things, they are missing so much else, too.

People hate the phrase “the new normal.” I think because it was thrust on them when they weren’t seeking it. The first time I heard that phrase was at a women’s conference when I was struggling with infertility. I was trying to resolve the gap between my hopes and my reality. And I attended a talk by a couple where the husband had had some sudden, severe health challenges. The wife told her someone had told her to stop trying to make the old normal happen, and to learn to embrace and look for the joy in her new normal. That was a lightbulb moment for me.

When I was getting ready to bring Patrick home from the hospital for the first time, the NICU attending sat down with me for, basically, a pep talk. He warned me that things were not going to feel right. That I was going to think I was failing most of the time. And that I’d at least once be sure I’d killed my son, even though I hadn’t. He told me that finding a new normal takes time. At least a month. And that I needed to grant myself grace while that happened.

I found that timeline to be very true. With every hospitalization, every medical change, every setback or triumph, we’d have to figure out a new routine and a new normal. And depending on the extremity of the change, it could take anywhere from 2 weeks to months before normal came. But it took the longest when I resisted the change.

I’ve spent most of my adult life adjusting to new normals. The Lord loves to reset my life on a moment’s notice. So this isn’t all that unfamiliar for me.

That doesn’t mean that I don’t mourn for the old normal. Let’s be honest, my life ended on March 14. My hobbies, my friendships, my space, my time. Everything I’d built was erased and I got to rebuild it from foundations up with my faith, my family, and my home as the beginning stones. So I miss time with my friends. And I miss having the house to myself. And going out to lunch. And Disneyland. And wandering the produce section of the grocery store. And hearing about my son’s day when I pick him up after school.

One of the hardest parts of this pandemic has been learning to offer grace and forgiveness to those who are actively fighting against “the new normal.” I cringe at social media shares of risky choices and neighborhood parties. It’s hard when that holding on to old things or trying not to miss out sometimes directly affects me. Like when we have to avoid the park on a walk because of the soccer game there with maskless crowds undistanced. Or the time I waited an hour at a restaurant for my curbside order to be brought out because there was a crowd inside and the manager thought he had to keep the line moving and so he didn’t serve anyone not inside the store.

The anger in online communication has been among the worst. And it’s taken me time to learn not to get caught up in it. It’s difficult to bite your tongue when your life for 12 years has been based on trusting the medical profession, understanding epidemiology, following protocols to prevent infectious disease, and reading and interpreting studies. There is really nothing about this pandemic or any of the suggested precautions that is new or surprising to me. This is the same science we’ve known for Patrick’s whole life. Except the human element. I have been surprised by the propaganda, the politics, and the destructive power of the share button. And it sometimes takes conscious effort to keep the real person in mind instead of replying to an online persona. I want to correct misinformation. I want to rage at the lies. But mostly, these are people I love. And only love gets people to listen anyway.

It’s easy to feel unseen, unheard, and unremembered when you are the 1% that’s considered an acceptable loss. Especially when it means you are at home, literally unseen and unheard.

But there have been some miraculous moments of our being seen, too. Like the neighbor who showed up on my doorstep one night with raspberries because I told her I missed them and was having a hard time buying them. Or the amazing group of women who flashmobbed me for my birthday. It’s the texts checking in. The picking up odd items for me while at the store.

(Sidenote: Did you know there are things that stores won’t sell to you online? Toy diecast cars was one. Little Debbie holiday treats, for some reason. And just about every high demand item like hand soap, clorox wipes and toilet paper for a while. I’ve had to learn which stores allow which hard to find items. And we’ve had to give up some other things we used to never live without.)

Being seen is little things. It’s a months long running Marco Polo conversation with one of my best friends (who is also sheltering at home with her 1% son.) And it’s those who still invite and allow me to serve with my talents.

It’s been a privilege to continue to serve as compassionate service leader. Welcoming babies and comforting others through sickness and loss almost entirely through text and phone calls. Helping families who lost someone to this virus has been poignant and sacred. (There’s a red ribbon tied around the trees in my front yard in memory of a neighbor taken by the virus that I don’t know I’ll choose to take down myself.)

I’ve loved continuing to serve as PTO president. I was going to call it off the first year, until I realized that I was the one with the budget for teacher appreciation and the end of year celebrations. I was also the one with experience adapting traditions to crazy health restrictions. So I ended up hosting a week-long game show for our teachers. And I bought gifts and decorations for an end of year reverse parade.

Sometimes I feel like a puppet master running PTO meetings by Google Meet and then giving other commands by text message and sending other parents to do the work I can’t do myself. It’s taken creativity to reinvent school traditions this year. But it’s been a wonderful chance to enjoy and celebrate the now and I hope my efforts have others as we learn a different way to do things.

There have been other hard moments in this year. Not directly from the pandemic, but made harder by it. Rioting and civil unrest. And a windstorm that brought hurricane force winds rarely seen in Utah.

Between the trauma of being woken by an earthquake in March and then a night lying awake listening to that windstorm, Patrick has become pretty skittish about sleep, especially in the morning. He wakes in the morning and lies awake waiting for day to come. I finally taught him how to read a clock, and convinced him he should try to sleep if he wakes before 6.

But most days, since he doesn’t understand time, he lies there and waits for the clock to change. Sometimes for hours. And he’s in my room at 6:04 telling me it’s morning. To survive, we taught him how to serve himself cereal or yogurt or cottage cheese so we could sleep a little longer. Growth comes in unexpected ways.

Finally, an end is in sight for this pandemic. Almost. There are vaccines available. I was nervous at first about their quick development. Until, that is, an infectious disease doctor I trust explained out how the sheer volume of people affected by a pandemic had helped them complete trials faster than usual. No corners were cut, there just were enough people for trials. He also pointed out that the technology had been being developed for years and just needed an application.

Still, we have to wait our turn in line. And unfortunately, there are no pediatric studies complete. So the person in our house who needs the vaccine most, Patrick, may not be able to get it until fall.

There are variants that might be resistant. And no one knows if vaccinated people can spread the virus as can happen with other vaccines.

And with the degree of vaccine hesitancy or outright misinformation, I’m not sure that there will be enough herd immunity available to protect him without being vaccinated himself.

I remember last March reading about the Spanish Flu. I’d downloaded a book thinking “This was a major historical event, and I know nothing about it.” So when I finally was ready to face it, I read that book. And I read historical accounts. That pandemic lasted for 2 years. It looks likely that this one will, too.

So we’ll keep doing what we’re doing. Keeping safe, but not waiting. Being patient, but living the life we have.

There are things we have learned we can do without. I used think that we needed to keep Patrick in therapies as much as possible to help make up for the effects of his brain injury. But when those were cancelled, and I started to put in a full school day with him, it suddenly seemed cruel to make him leave school and still do hours of therapy. After years of attending therapy with him, there is a lot I can do for him naturally in his day anyway.

We learned, however, that we did need other support. The sudden change in activity made the effects of cerebral palsy in his legs so much more severe. Especially in the midst of a growth spurt. Thank goodness for a video consultation with his physical therapist and a dedicated adaptive P.E. teacher, we were able to help me find ways to stretch and strengthen so he could walk more easily again. It helped, but when the weather is warmer, we have a lot of strengthening to do for him and for me. We just don’t get to move enough.

My family is closer than we have ever been. Unlike other trials, we’ve spent this one together, not apart, and it’s brought us close. And despite the outright disasters (multiple) of this past year, we have discovered so many other wonderful things.

I hope we never lose the lessons of family and slowing down.I hope to carry lessons I’ve learned on with me. I hope we don’t resume old habits of ignoring sickness or ignoring those in need around us. That we remember what we’ve learned about staying connected.

One basic principle we computer nerds know.. Sometimes it’s best to just wipe out a computer or a device and rebuild it from scratch. Get rid of the unneeded processes that are bogging the system down. I think that’s kind of what we’re doing now.

If you’ve made it to the end of this long, rambling post.. well, either you’re probably related to me or this pandemic has left you with extra time that you’re trying to fill. Mostly, I’ve written this for myself. To remember what happened this year. And because, as a blogger detailing our transplant journey, it’s worth acknowledging the very unusual experience that it is to be a transplant family during a pandemic.

Whenever I get fatigued by his long, long trial I remind myself that we have been gifted many miracles in Patrick. It is a gift to have him with us at all. He died in my arms and was brought back. He was saved from sepsis more times than I can count. We received another gift in his being made nearly whole by transplant. And I don’t take for granted the gift of his donor who, in a way, lives on in him.

I can be patient and grateful in protecting those gifts. I can be inconvenienced by staying in my comfortable home. We’ve survived things this hard and harder and been sustained.

It is a privilege to be rare, to be the 1%, or even less than 1%. And hopefully what we know from our rare journey can help others. The world has been thrust into our unusual life.

We’ll see if I have more time moving forward to keep up on blogging what it is to be 1% in a pandemic. I have nothing but time, but with distance learning, I also have never had less time. But if you made it to the end here, thanks for listening.

I’d normally pack a post with pictures and maybe someday I’ll go back and do that. But for now, here’s a link to Patrick’s 12th birthday video. That’ll catch you up on pictures till Halloween at least.

Since last I wrote..

This blog has been quiet for a while. It takes time and work to get settled into a new home, school, and life. Honestly, for the first several months I was just unpacking and painting and decorating in every moment I could get. It’s been a year and a half and that job still feels less than half done, though I’m sure it’s not that bad.

That first summer, we unpacked what was necessary and otherwise I tried to focus on having summer. In this neighborhood, there are “summer recreation” classes at the park in the summer. On the days we didn’t have class, we had therapy. We decided to shift some of his goals towards life skills and so our therapy sessions went to the grocery store where Patrick practiced not running into me with the cart and walking as slow as the other shoppers.

At the end of June, Brian and I had the amazing opportunity to visit Rome, Milan and Paris together. I can’t tell you how amazing it was to get to visit the Vatican Museums, the cathedrals, the Louvre, the Duomo. To just soak up all of that early renaissance art. To see the evidence of the reawakening after the dark ages and apostasy, as people’s hearts began to turn again to their Maker and their Savior. We also learned to make real pizza dough (with a lot of help), spent 3 hours being taught about mosaic and micromosaic art from the family who maintains the amazing mosaics at St. Peter’s Basillica and other masterpieces around Italy.

That was perhaps my favorite experience. Another was visiting the construction site of the Latter-Day Saint Temple in Rome. It was humbling to walk where early apostles had walked, and then to stand on land dedicated by living apostles for the same work. Brian ran into a family that he knew from his mission there and we ended up spending hours learning about the symbolism and architecture in the temple. (Such as marble replicas of the statues of the apostles made from marble from the same quarry that Michelangelo used for his sacred sculpture, Pieta, for example.)

After several days in Rome, we took a train to Milan to catch up with a friend of Brian’s who was living there. And then we flew to Paris where we spent a day before flying home. We were so exhausted that we went to bed while the sun was up that day.

I returned home just on time for July 4th while Brian went on to work in Ukraine. Patrick and I celebrated the 4th by immersing ourselves in parades, fireworks, and all of the other things our new neighborhood had to offer.

The rest of our summer was a little surreal. We had moved from such busy responsibilities and lives. But we weren’t busy yet, except with unpacking. I spent most summer evenings sitting in the window or in the front yard reading the entire Harry Potter series while Patrick rode bikes in the front yard with the neighborhood kids. We were really blessed that first year to have a lot of kids his age available to play with just outside the front yard.

July and August went quickly and soon, Patrick was in school. Moving Patrick to this school and moving to be close to it was worth all of the sacrifice it took to get him here. His teacher this year was amazing! I walked out of our first IEP meeting just stunned. I’d known that Patrick’s IEP was weak and even more weakly honored. Honestly, we all had a good laugh at just how terrible it was. Then, they went through and fixed it. Made goals that really would make a difference for Patrick. Offered enough support to actually make those goals work.

And then, for the reset of the year, they actually worked on those goals. I’ve known for years that Patrick’s strength was reading and spelling and was frustrated to know that he wasn’t being taught even what would have been basically offered in kindergarten and first grade about phonics. I did all I could to make up for it at home, but since his evenings were filled with laborious and frustrating homework that could take 3 hours or more, there just wasn’t opportunity for me to do so.

Well, this year, Patrick actually gained a grade level in reading. For the first time since kindergarten. And his self-esteem just soared. He also came home excitedly talking about things he’d learned in science or social skills.

Math is still his hardest subject and he’s missing some foundations, but although a lot was over his head, he understood place value and basic fractions. And, at the least, he was excited to try instead of frustrated by the same things over and over again.

Also, amazingly, he made friends. In fact, he made a best friend. Who, although he moved from the school mid-year, we have been able to spend a lot of time with this summer. And it’s been thrilling to see him with another child who shares his obsession with cars and just enjoys his company.

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While Patrick was at school, I unpacked, painted, went to the temple, went out to breakfasts and lunches with new and old friends, read the Book of Mormon, and then started an intense study of the New Testament. I volunteered in his class teaching music every other week. And I helped his teacher, or at least tried to help his teacher, turn her ideas for fun projects and field trips and class parties into reality. I dressed as a witch and made a witches brew for Halloween, for example. I also got involved with the PTO the school tried to start this year. And by the end of the school year, had somewhat accidentally stepped into a leadership role there. I’ll be co-president this year with another mom who’s become a great friend and hope I’m not in over my head.

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Also, I spent a good part of the school year being sick. Or taking care of Patrick while he was sick. The treatment for my Rheumatoid Arthritis is immune suppression. And I had completely underestimated how having both mother and son with weak immune systems could affect the family. Patrick and I took turns catching things and giving them to each other. I have never experienced illness like this before in my life.

I’m happy to report that the RA is not as severe as it was before I started treatment. It’s rare for me to have knees so unsteady I can’t walk or hands so swollen that I can’t straighten my fingers. But it also isn’t entirely gone. And the busy year and change in routine means I am not as strong as I was when I moved here. One of my goals in this coming year is daily exercise and hopefully some strengthening so that I can walk 2 miles without pain again.

This disease has been a different kind of trial for me as I learn to keep going when I hurt or am sick. I am trying to learn not to complain and not to quit. But to rest when needed. And it’s a hard lesson in patience.

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At least, I have a great example in my son. And a very supportive husband.

Speaking of Brian, his responsibilities at work have just continued to grow. He heads 5 teams now. He’s been put in charge of fraud prevention, in addition to development and management duties. And that’s pushing him into the field of security more and more. And honestly, I don’t know how he could have kept up with both this intense level of responsibility at work and continued in the bishopric (meaning one of two assistants to the lay bishop in our local congregation).

He’s currently working as both cub scout committee chair and scout committee chair, as well as building scheduler. So he’s busy, but a different kind of busy.

I taught the 4 year old Sunday School class for a year, and have recently changed from that responsibility to being in charge of the Compassionate Service committee at church. Basically, that means that I help coordinate meal trains when someone is sick, has a baby, or is otherwise struggling. I terribly spending Sundays with the sweet little children. However, it is wonderful to be able to turn my years of trials into a chance to serve others. I owe an unpayable debt of gratitude for all of the times we have been ministered to.

In spring we did a consultation with Shriner’s Hospital for a second opinion on his cerebral palsy. Ultimately, we decided that any treatment would be far too traumatic to be beneficial for him. And that we should just find ways to let him play.

So, we signed him up for an adaptive soccer team, which proves to be much more productive than physical therapy for keeping him active. He had a great time! We can’t wait for it to come back in fall.

Shriner’s also helped us to trade his little training wheels for big “fat wheels” adaptive wheels on his bike, which has helped him gain confidence in riding. And we’re working on helping him get brave enough to go around the block.

It’s summer again. We’ve spent the past few months at summer rec in the park. His best friend’s mom and I signed the boys up for summer rec classes together and so we’d see them at class and then get together to play once a week or so.

Patrick also asked for swimming lessons, so we’ve had private lessons once a week at the pool near home. It’s slow progress, but he’s slowly getting over his fear. I’m also hoping this is helping to strengthen him. Though right now, he needs a whole day to recover after a half hour swimming.

Brian’s Ukraine trip was in spring this year. So we’ve had several family vacations this summer. A family reunion in Montana. Patrick’s aunt bought him a fishing pole and sparked a love of fishing in him. (Although he’s currently fishing without a hook and I don’t know how he’ll react when there are actual fish involved.)

Not long after, we decided to take our first family tent camping trip. Patrick did amazingly! Slept happily in the tent both nights. Complained about the idea of roasting hot dogs on the first, and then devoured several.

And just a few weeks ago, we took a spontaneous trip to Disneyland because we’d heard that crowds were smaller than average for summer. They were. It was hot, but a lot of fun!

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We don’t have may medical updates. We celebrated the 4th anniversary of Patrick’s transplant and the 10th anniversary of his cardiac arrest this year. Patrick has outgrown his allergy to peanuts entirely. He is still allergic to eggs, but as long as they are cooked, he does ok with them. The worst reaction we have noticed is a fine rash when he eats mayo-based products. We’re hoping that with increased exposure, those reactions will get less and less until they’re not a concern anymore. Tree nuts, however. Patrick’s reaction to tree nuts is still in the scary range. So we carry epi and avoid cashews, pistachios, and all their family.
It’s August again and back to school is just around the corner. I’m nervous as always about him being in a new class. But I’ve heard great things about the new teacher.

We’ve had some great blessings over this past year. I’ll be honest, though. Picking up and moving our family was a little tough. It’s taken time to make friends, find routines, and feel like we were at home. It’s made us grow in good ways.

An example. Or maybe a metaphor. Our new house is in an area with a very high water table and, as a result, basements are not very deep here. And all of the homes have long entry stairways. Add to that high ceilings that are popular in newer homes and there are a LOT more stairs in my house now than before.

A lot of people questioned whether this was a smart choice for someone who was just diagnosed arthritis. But there’s been an unexpected blessing in it. Doing more and longer flights of stairs every day has strengthened my knees.

Moving has made me stronger in other ways, too. It took me out of my comfort zone. It took Patrick out of HIS comfort zone, which was especially hard for him. We have been incredibly blessed by this new home. Sometimes because it made things easier. And sometimes because it made things harder.

It’s been a good year, and really a good summer. And I’m excited for the opportunities that fall brings as we’re starting to find our rhythm in this new place.

Some big changes

It’s the beginning of a new era for the Hoopes Family. Our lives are filled with packing, cleaning and painting right now. Why? Well, because as of Monday, we own a new house. It’s about 20 minutes north of here in a quiet little neighborhood.

I can’t remember if, when I was writing about Patrick’s tonsils, I also wrote about his name having come up in the lottery for a special needs charter school. I was so buried in tonsillectomy recovery with my husband out of town that all I could think to do that week was complete the required paperwork.

Well, things settled down a bit and we decided we’d better figure out what needed to be done to know if we wanted Patrick to attend that school. I’ll be honest, my first impression was that I didn’t want to give up all of the great things I had going on right then and didn’t see any reason at all to move.

BUT I did follow through by setting up some school tours and meetings with the school principal. And, well, given the length of the drive (and the added complication of having to use the freeway for the commute,) I decided to look around the neighborhood in case Patrick did great at the school and we wanted to consider living closer.

Well, from that moment on, we just couldn’t seem to leave the investigation alone. A house caught our eye, we looked it up. Found flaws. Then another appeared. I couldn’t stop thinking about it so I drove out to see it. It wasn’t right. Nor was another. And we didn’t really think we were house shopping. Just getting to know the neighborhood.

Until… Brian spotted one nearby but NOT in the neighborhood we were looking at. We did a walk through and as we talked about it we could see so many great things for Patrick’s future in that house. A quieter neighborhood, proximity to parks, proximity to a great school, space for a bedroom downstairs and away from us when he gets older.. and the list went on and on. As we talked, I was filled with this sense of total peace.

So before we found an answer about the school and just 2 weeks after even discussing the possibility of moving, we put an offer on a house.

The rest has fallen into place very quickly. Through a ton of quick work, we cleaned up our house, did some staging, held and open house. And found a buyer. In fact, not just a buyer but one we’re really excited about selling the house to so we don’t feel quite as guilty for leaving. The financing came through in record time. The sale came through without a hitch.

And so by the end of this week, we’ll be moving. I’m not ready. It’s gone SO fast! And I’ve got just this week (one Brian’s working evenings in, even) to repaint the entire basement, finish packing, be present during Patrick’s last 2 weeks of school, tie up loose ends with PTA and church.. and be ready for the movers to come on Monday.

I am exhausted and I hurt everywhere. And there is so much still to do.

That brings me to another new thing in our family. Mostly, another new thing for me. Remember that post a few months back where I said that I just kept developing tendonitis everywhere as I tried to get in shape? And did I mention as I wrote about Patrick having EBV that we think I had it too?

I know I didn’t mention that at the end of November one morning I woke up and I just couldn’t walk. My knees were swollen and unsteady and it felt like I was ice skating. It took about 4 weeks to finally get to the point of doing cortisone injections which restored function pretty immediately. Except that things weren’t quite right. Not in my knees. Or my wrists or my elbows.

Well I finally got enough of a moment of quiet to go to the doctor who said, no, none of that is normal results of going from inactive to active. She ordered several blood tests looking for autoimmune diseases and other things.

And, well, one came back positive.

As it turns out, I have rheumatoid arthritis.

Our theory is that it was kind of there latently.. but when I started to exercise it brought it to the surface. And then, when I got sick (possibly with EBV) it triggered the auto-immune response.

RA is a lifelong, chronic illness with some pretty scary possible outcomes if left untreated.

The good news is, it’s one of the ones they are having success in treating. And we caught this quite early, we think.

So with immune suppressants, my new doctor thinks that he’ll be able to put the disease into remission and really minimize it’s effects.

It’s scary. The drug I am on is some very serious stuff. I’m now scheduled to have labs and follow up visits as often as Patrick is. This is a HUGE life change.

On the other hand, I’ve only given myself just one shot of the new medicine and it gave me 3 wonderful days with very little pain. The doctor said that in about 3 weeks it may be built up enough in my system to be considered remission. And it’s great to know that this hasn’t been all in my head, or because I was out of shape, or wimpy, or bad at taking care of myself.

And I’m thankfully so very busy with the move that I can’t really think too much about it right now.

It’s been such a whirlwind that it’s kept me, in part, from thinking too much about all the things that we’re leaving behind. I did lie awake fretting about that a lot at first. We really do have a beautiful home with wonderful neighbors. I’m going to miss my kitchen, my gardens, just being in the neighborhood of my family.. and most of all, I’m going to really miss my friends.

The only thing getting us through is this amazing peace that I feel whenever I drive out to our new home. The Lord is providing that in ample doses. And I know it’s where Patrick and we belong.

Transplant Day 1,214 and Tonsils

This is a bit of a catch up post and it may be long. I write today from Patrick’s bedroom. He is lying in bed watching Cars 3 running a Powerade drip into his g-tube on day 5 post tonsillectomy and adenoidectomy.

Patient Zero

How did we get here? Well let’s rewind to the day before Christmas break when I noticed that I had a fever and a horrible neck ache. It likely started with me, though it was Christmas break and I never did get diagnosed with anything more than a virus causing crazy swollen lymph nodes.

The Onset

Mid-January, Patrick got sick. We thought at first it was a cold. He had an ear ache and I took him in to urgent care to be checked with me for an ear infection where we were told it was just one of many viruses, no ear infection. But he got sicker and sicker and on the 3rd day when he refused to eat and I looked and saw the size of his tonsils all covered with white spots, I took him to the pediatrician. She ran a strep test, which came back negative. And we were told again to just go home and wait out the virus.

Sometimes I’m good with that answer. Especially with a kid who’s immune suppressed. But sometimes the mommy spidey sense goes a little crazy. (Ok, ok. It’s actually the extra guidance mothers sometimes get through the Holy Ghost when their children need help.. but we call it mother’s intuition.) Anyway, this time I didn’t feel settled with that answer. So I texted Patrick’s GI and told him what was going on and asked if he had any concerns from a transplant perspective. He called me back almost immediately and told me that he wanted to know what was making Patrick sick so we could stay ahead if it was one of the big viruses that are dangerous for transplant patients.

Diagnosis

So the next morning at 7 a.m. Patrick and I headed up to the hospital’s outpatient clinics where Patrick’s doctor met us and arranged for labwork, an exam, and a viral panel. It was a long morning with a couple of hours of tests. And then we headed home. By evening, all of the preliminary viral tests had come back negative. Despite the brutal flu season, Patrick didn’t have Influenza, RSV, or any of the other circulating respiratory viruses. The doctor said good news. I felt even more at a loss.

Meanwhile, Patrick just kept getting sicker and sicker. We camped out in the basement and I had to start using his g-tube to keep him fed and hydrated. He was miserable. I was exhausted. And I just kept checking for lab results because as the day went on, I became more and more convinced that with everything else ruled out, that Patrick must have the Epstein Barr Virus (EBV), commonly known as Mono.

Sure enough around 4 p.m. the results for that test came back positive. I texted the doctor and said “what’s next?”

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Some history

I’m going to take a break in the story here to make a confession. Part of the transplant workup is a very long afternoon where you sit in the room with a transplant nurse and they explain to you in detail all of the risks associated with transplant. You’re aware of a few of them. Of course the risks of surgery. And rejection. Susceptibility to illness. But there is so, so, so much more that comes with immune suppression and transplant. Activity restrictions. Diet restrictions. And perhaps the worst is something called Post-Transplant Lymphoproliferative Disorder (PTLD).

PTLD is caused when a patient who didn’t have EBV before transplant. When they catch this virus the first time while immune suppressed, it can cause the lymphatic system to go a bit crazy. It involves into a form of cancer called lymphoma. So, yeah, transplant can lead to cancer.

And the day that sat us down and talked to us about all of these restrictions and risks, especially this one, we were so overwhelmed by the understanding that the treatment called transplant was much more of a trading in of problems than the cure all the happy ending stories on TV had showed us.. we were so overwhelmed that we couldn’t even stand to talk to anyone that day.

3 years later in another evaluation, we knew this information was coming. But it was still hard to hear and even harder to talk about. So, well, we didn’t. We just warned you that transplant wasn’t a cure.

PTLD workup

Returning to the current story.. I talked to Dr. Jackson in the early evening and he reminded to me that more than my immediate concerns about having a kid with mono, we needed to be thinking about PTLD. I thought we’d set up testing within the next couple of days. But when he called back just after we put an exhausted, sick Patrick to bed to stay he wanted us to come in to be admitted the hospital right away, we were a little caught off guard.

And so we advocated for the value of rest and protection from other illnesses and Dr. Jackson consented to try to set something up outpatient.

But at 5 a.m. he texted and said that admission was the best way to make sure Patrick got in for a CT scan right away. They needed a CT scan of his entire body to check to see if there were signs of PTLD. And he said to prepare to stay for an emergency tonsillectomy.

So that’s what we did. Headed in prepared for the worst and hoping for the best.

Patrick did amazing in CT. We thought he might need to be sedated to hold still. But then decided that he is most cooperative when he’s helped to understand what is going on an given a chance to cooperate. When he feels in control. We got lucky in that we were able to get Patrick’s favorite child life specialist there right on time to go down for the scan with us. And though he was nervous, he was very brave and still.

In the end, the CT scan came back negative for PTLD. (Though it did describe in pretty amazing detail the way that Patrick’s vascular anatomy has changed as a result of his lost central venous access.) So they treated him with an IV antibiotic for a raging ear infection they discovered when he came in. And we got to go home.

In the midst of getting better, we did have one wonderful snow day where we made this snow-Boov in homage to the movie Home. And then had to nap all afternoon to make up for the effort.

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Getting better

Patrick actually did get better pretty amazingly from the EBV. His immune suppression is pretty low right now because he’s had no issues with rejection. And so the virus mostly ran its course in a couple of weeks. The blood tests went from virus counts in the tens of thousands to “unquantifable” low levels. Patrick’s appetite and energy came back. And the doctors agreed that Patrick had had just an acute case of EBV and had fought it off.

However, his tonsils stayed big. Not just a little enlarged. So big that they were touching each other big. So large I couldn’t understand how he could swallow big.

And, well, EBV is a tricky little virus. I’ve learned a lot about it over the past month. And one of the things I’ve learned that there’s a family of viruses that stays forever in our DNA. Chicken Pox, herpes, and EBV. That’s why you only catch them once. That’s why they are sometimes reactivated when we are stressed. (Shingles, cold sores, “mono makes you tired for months!).

And because EBV lives mostly in the tonsils, their not getting smaller was a problem both clinically and because it meant a long-term greater risk of PTLD.

Meeting with ENT

So we scheduled an appointment with an Ear, Nose & Throat doctor who took one look and said there was no doubt. Patrick’s tonsils were huge and even without transplant concerns, they needed to come out.

We didn’t spend the visit discussing the need for tonsillectomy. We spent it talking about the problem of pain control when ibuprofen wasn’t allowed. Because that’s one of those lifetime commitments you make with transplant.

Tonsillectomy and adenoidectomy

So Patrick had his surgery on Thursday. We were told 30-45 minutes for the procedure. That’s what I expected, too. I’ve sat in lots of surgery waiting rooms watching ENT doctors go in and out every 30 minutes as they reported about placing ear tubes and taking out tonsils. I often wished I could be one of those parents whose concerns were as brief and uncomplicated as those parents. I felt a bit arrogant at times that I was the one who knew the waiting room attendant by name. Who came to stay there.

So it was strange to be in that “simple procedure” role. Except that, of course, we weren’t.

The doctor came out after a little more than an hour to finally tell us that the procedure was done. That the tonsils really were huge enough to need to come out and that the adenoids were even bigger. That Patrick was doing well, but there had been some “oozing” that had made the procedure a little more complicated. And that he’d be awake soon.

And then an hour later, when they still didn’t call me back to the PACU, despite our insistence that Patrick needed us there when he woke up of he’d be combative and inconsolable, the phone finally rang for us. It was an OR nurse who explained that Patrick had continued with “oozy” bleeding and they’d spent all that time trying to get it stopped.

So we waited some more and the doctor finally came back out to say that things were finally settled. And he thankfully hadn’t needed a transfusion. In all, the procedure took 2 and a half hours. We were at Patrick’s side to help wake him, and then moved to post-op.

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Observation

Patrick was what they call a status A-11. Meaning he wasn’t admitted but he wasn’t discharged. He had 23 hours that he could stay for observation without having to involve the insurance companies for authorization. So we spent the night in Post-Op Recovery.

Patrick was really inconsolable as he first woke up. He just cried and whimpered and wouldn’t talk. Would barely open his eyes. Finally, I left the room to go to the bathroom and as I listened, I realized he wasn’t as much in pain as he was just angry. So I tried a crazy approach where I came in and told him to stop pouting. Then tried to distract him. I made him start taking sips of water despite protest then pointed out that it helped more than it hurt.

It amazingly worked. His anesthesia wore off. His pain meds kicked in. And he woke up sore but pretty happy. We ordered dinner and he wanted some. And soon he’d eaten 3 yogurt cups and drunk some Kids Boost. But the anesthesia made him nauseous and he couldn’t keep much down.

The night was rough. We turned on the movie channel and let it play all night and would doze off and wake again. Eventually as the anesthesia wore off his pain overwhelmed his hunger and he stopped eating. He’d fall asleep but the swelling in his airway made it so his oxygen levels would fall and the monitors would alarm and wake him again. Or he’d start coughing. And his temperature started to creep up very slowly.

But we made it through the night. Post-Op was so very quiet. Our nurse was great. And by morning, I thought we were in pretty good shape. I even though we might beat the odds and go home at 23 hours after all.

And more observation

When ENT came to check in, they decided they’d like to take a little more time to observe. So they moved us to a big comfy room in the surgical unit. And we watched. And what we saw wasn’t exactly comforting.

Not having ibuprofen was proving to be problematic. See, ibuprofen is an anti-inflammatory and inflammation is a big issue with tonsillectomy. It can cause fevers. It can cause airway narrowing. And of course, there’s the problem of finding a balance with pain control when you have to use an opiod.

It took the whole day and night to get a handle on using the g-tube to keep him hydrated and his gut moving, to figure out how to help his cough and keep his saturation up. And to make sure the fever wasn’t getting worse.

They did a chest x-ray to rule out pneumonia. But did advise us that with that long of a procedure, Patrick’s lungs would need help to refill the air sacs.

Home again

But after a second night, we finally reached a stable baseline and headed home. The first day home Patrick was just exhausted. He fell asleep anytime he held still. Wherever he was. They warned us day 3 is the most painful and, well, it was.

Yesterday, he started to perk up a little after a good night sleep. I finally was able to convince him to start sipping some water. And he even ate a little bit of macaroni and cheese. Which wore him out.

But he started to play and tease a little bit. It was good to see his smile back. And our bird, Max, followed him everywhere he went.

He fell asleep by 5 p.m. But that’s good as his cough has gotten worse again overnight. But his pain is a little less, he’s more awake. And before I finished this post, he happily though tentatively ate some KFC mac and cheese for lunch.

This recovery is a slow process. And unfortunately, Patrick’s having to do it the hard way. As caregiver, I am very tired. Sleep, food, and personal care have been hard to come by.

But we’re getting there. And it’s only supposed to last 7-10 days.

And on the other side, my son is acting completely loving and smitten with us, instead of his usual independence seeking self. I’m going to soak up every minute of a cuddly loving boy who just wants to be with me. Because soon he’s going to really be too big to hold on my lap for half an hour.

I hope to post more updates. But remember, as always with this blog. Usually the times I’m quietest are the times that are calm. If I’m not writing, it probably means that we’re busy and happy.

Transplant Day 804 and Look Ma. No lines!

**Composed yesterday in the surgery waiting room**

This is a good news post. But I’m finding myself so very out of practice at writing updates in the surgery waiting room that I am having a little bit of a hard time getting started.

At 7:30 this morning, we kissed a very drugged and giddy Patrick goodbye at the O.R. doors. He is having his port removed today. We haven’t needed it in a while. We left him with a central line because this his veins are so scarred that putting in a new line will certainly be difficult. This port has been so much healthier than any other central line he’s had before. And it saved him trauma with labwork. We didn’t feel any rush to get rid of a line

But this summer Patrick’s bloodwork started to come back so stable and consistent that his decided to switch labs to every other month, the port became more effort and risk than benefit. (They have to be flushed every 30 days regardless of if they were used.) We knew we’d need to have a talk about removing the line soon.

Last October, we took Patrick for his annual transplant checkup. When we raised asked the doctor if we should be considering taking the port out, he was surprised to find it was even still there. There was no question that it was time. Soon… But of course, we still took our time.

We allowed time for the doctors here to talk to the folks in Nebraska and know what would be involved in removing a direct superior vena cava line. We tried to wait for the end of cold an flu season.

But also at Patrick’s follow-up in October, the doctors decided to stop Patrick’s prednisolone, which was a major part of his immune suppression. Within two weeks, he started to have a severe pain in his side. After about a week, a small bump finally formed. And when we took him on a rollercoaster ride, that bump burst revealing a small abscess.

For some reason, one of the dissolvable stitches in Patrick’s ostomy scar never dissolved. It just stayed there as long as his immune system was heavily suppressed. But as soon as the prednisone was gone, his body started to rebel against a foreign body. He’s had a recurring abcess for several months now. Just a little pimple that would rise and fall. But it hurt like crazy. And that’s what finally got us here.

So here we are. An hour after Patrick went back, the surgeon was back out to report that all had gone well. He’ll have a little bit of an open wound where the abscess was an a pretty sore area on his chest until the space where the port was heals. But overall, this should be pretty easy.

We’ve taken the port for granted for the past year or so. That makes this transition a little bit simpler. But the simple realization that Patrick has IV line for the first time in his life is a little bit disorienting.. miraculous.. scary.. comforting.. umfamiliar.. splendiferous!

Now not every fever could mean sepsis. Now he’ll have to have labs drawn from the shoddy veins in his arms. Now we won’t have to wake up early once a month to apply numbing cream before the port is accessed. Now we may not have numbing cream at all. Now he won’t have to protect his chest to play. Now it matters more if he eats and drinks. Now we won’t have to worry if a clot is forming. Now he may not automatically qualify for nursing. Now there’s one less thing that makes him different from other kids.

But really, it’s about time. Because I keep forgetting that it’s time to access his port. And I keep forgetting to tell doctors he even has one. He really didn’t need it anymore.

I’ll leave you with the words of a song that Patrick is singing or making me sing at least once an hour right now.

“I feel better, so much better
Thank you doc for taking all the ouchies away.
I didn’t feel so good till you fixed me like I knew you would
And I feel better. So much better now.”

February means…

Hi there! I’m typing to you from a laptop that is sticky with starburst fingerprints. It’s been quite the day. We’ll call it “February isn’t over yet.”

If you deal with chronic illness, especially in a child, you know that February is something to be greatly feared. Sure, I bet when you think of cold and flu season, you probably think of, oh, say December when everyone’s sharing colds around as they visit each other for the holidays. February is much, much worse. February is respiratory illness wonderland. it’s when the hospitals fill up to overflowing and they start putting beds in the broom closets.

According to Facebook’s memories, Patrick has been sick and often hospitalized pretty much every February of his life.

I wasn’t sure how we’d managed it. The children at Patrick’s school are walking around looking like death. Everyone we know has been sick. And yet, our immunocompromised superhero has been healthy.

Well… had been healthy.

This morning, Patrick did something he’s never done before. He told me, “Mom, I think I have a cold.”

Please note, this doesn’t mean he’s never had a cold. He’s had lots of cold. Doozies of colds. He’s been admitted to the hospital over many, many colds. But because of that exact fear. Being sent to the hospital… he doesn’t admit to being sick.

I was super proud of him.

And I decided to listen to him. Patrick really isn’t very sick. If he hadn’t said anything, you might not even know for sure anything is up. He is so good at pushing forward through things. But he’s been extra sleepy. A little grumpy. Restless. And has had a bit of a cough. Today, we added on an adorable nasal-y voice.

But, really sick or not, Patrick already had a checkup scheduled at the hospital at noon. And so he was going to attend less than 2 hours of school anyway. Which means no credit for the school day at all. And so – we kept him home.

One thing that all these years of medical surprises has taught me is how to throw all my plans to the wind and dive into super parent mode. I did pretty darn awesome today, if i do say so myself.

Because he wasn’t crazy sick. And because he LOVES schoolwork more than just about anything. And because yesterday we tried resting and watching TV which only led to a very restless child… I told Patrick he could stay home but only if we did school at home.

I let him take a longer bath and while he was in the tub I e-mailed his teacher to ask for a list of spelling words. I roped off Howie’s office, since he was working from home today, which is a huge temptation for them both. And then, while he played with toys for a bit, I hopped onto Teachers Pay Teachers and downloaded some freebie homework sheets for him. Some math. Some reading. A cut and paste word family page. AWESOME stuff! It is so much easier going and getting him relevant homework when I’m not trying to pull my own curriculum out of thin air.

And then, after doing a few pages of work, I pulled out the chromebook and i logged him into the websites that he works in during computer lab at school and set him to work. We had a blissful half hour where he worked independently! Then we went to the backyard and had “recess” and talked about what to do next.

Patrick voted that he wanted to eat lunch in the hospital cafeteria. Don’t fault us for unusual comforts developed over the years.

So we packed up early and drove off to the hospital. We started out in the outpatient building’s cafeteria but alas, they had a menu that was more fancy than comfort food… hospitals do that sometimes so the staff won’t get bored of what they eat. But thank goodness the main hospital cafeteria still peddles good old comfort food fare. We got Patrick a bowl of macaroni and cheese while I grabbed some deli-case sushi. (Again, don’t mock our comforts). Then we picked up two rice krispie treats and a carton of milk and booked it back to the outpatient building for his appointment.

We checked in, weighed in, checked vitals, and then set up lunch in the exam room. A family tradition.

The checkup went well. Our experiment in g-tube boluses of carnation instant breakfast has paid off in some weight gain. And, though they were a little disappointed to hear that his diet isn’t currently all oral, his doctor pointed out that “that’s why he still has a g-tube after all.” and the dietitian agreed that it might help train his stomach to want food at the times we’re giving him these extra feeds and that’s good. We talked about some longer term strategy.

And then Patrick talked his doctor into drawing him a picture of a monkey as a “prize.”

This appointment went remarkably quickly as far as GI visits go. We can sometimes be there hours. This time we were done by 1.

And so, not wanting to referee “don’t bug dad at work” time too much longer, I offered Patrick a field trip.

He’s been working on the astronomy-with-a-cute-name belt buckle in cub scouts, so we stopped at the planetarium to help him with that requirement. It was a madhouse. There were at least 2 school field trips there. But Patrick seemed relieved to run wild with the other children. And I still managed to point out and describe the planets to him, and telescopes, and other astronomy stuff. Then we stopped in the gift shop and let him pick out a bookmark/ruler with the planets on it. And amazingly, he was reciting some of the names back to me. He is very offended that Pluto isn’t on his bookmark, even though I tried to explain dwarf planets. Aren’t we all.

Anyway… home again and this time convinced him to take a nap.

He woke right on time for me to tuck him into my bed to watch Blues Clues while I threw together dinner and tidied up the house before our next appointment.

A nurse came this afternoon to officially admit Patrick for respite nursing through the Utah Medically Complex Children’s Waiver. This is on top of the other respite we already have and feels a bit splurgy. But it’s required for him to participate in the waiver. And it’s required that it be done by a nurse. So we are doing it.

Patrick was a total flirt with the admitting nurse and she played along beautifully. Meanwhile, I did my best to communicate a clear medical picture. You know you’re a medical parent when you know which diagnosis needs to be listed in each system. And when you provide a list of medications in writing so they don’t give a copy back to you.

Anyway… that done, I cooked dinner and Patrick played with the chromebook. Don’t tell him that we bought this thing largely for him. Because you can’t tell him it’s his. He wants it. But that means he wants there to be no rules about it. And besides, I like to blog here.

While dinner cooked I managed to convince Patrick to do one math worksheet. And then after we ate, we sat down and had him practice writing out his spelling words. I told his teacher I didn’t think he was being challenged and now he had 5 words again this week. Usually, that would be just right. Today though, he wasn’t feeling great and he wasn’t happy to do so much writing.

Bedtime finally came and he got exhausted quickly. We scrapped our Family Night plans and just worked together for a quick bedtime. Complete with antihistimines (he’s not allowed any other cold meds) and vaporub and a humidifier. He was asleep in minutes.

I don’t know what tomorrow will bring. Howie and I are for sure also coming down with something. And i’m not sure Patrick will be up for school tomorrow. But it’s labwork morning so we’ll be up bright and early regardless. Doesn’t hurt to see how being sick is affecting his body. And we’ll go from there.

If I don’t post soon, you can probably assume that Patrick slowly got better and needed lots of my attention, and then one day he was better and I looked around and realized just how much else I neglected while in super mom mode. Anyway – usually on this blog no news is good news.

Happy February.

p.s. If you want to know just how nasty the cold and flu season is at any moment in Utah, check out this website https://intermountainhealthcare.org/health-information/germwatch/

Whom the Lord Calls

Valentine’s weekend represents a lot of milestones for our family. Two days ago, we celebrated the seven years since we took Patrick to the temple to be sealed to our family. Three years ago, we took Patrick to Nebraska to have him evaluated for a transplant there. It meant moving to a better program, but leaving a lot of comfort behind. A completely foreign city, a huge hospital, and no one we knew. And then one year ago, we arrived home with Patrick after he’d received his transplant, evidence of a miraculous recovery.

And then yesterday we added one more. Yesterday, Brian (also known as Howie, if you are ever confused by my mixing names in this blog post) was called to be a counselor in our bishopric.

A bit of explanation for those less familiar with the Church of Jesus Christ of Latter-Day Saints. The “Mormon” church has a lay ministry. That means that we don’t have professional clergy. At all. Some full-time. But none are formally trained. And none are paid. Instead, we are all trained as a part of “bringing up” in the church and we all take turns. Every 5 or more years, a new bishop is called. His service is voluntarily and in addition to his regular job, but no less real in its demands. He is a pastor to his congregation. Leader, comforter, judge, and friend. And he is helped in his work by two counselors. Brian was just made a counselor. (And in order to serve in that assignment he was also ordained a high priest.)

But this blog isn’t about Brian or about bishoprics. It’s about our family and our journey together. And so I’m going to share some reflections I’ve had as we prepared for this new assignment. (See, even though the news was only announced yesterday, we’ve known for a few weeks and I’ve had some time to think.)

A phrase came to my mind a few days ago. “Whom the Lord calls, He qualifies.”

And so I’ve been thinking about the calling I’ve been pursuing for the past seven and a half years. My calling as Patrick’s mother.

Seven and a half years ago, I took that a phone call, my life changed. But I don’t think you could say that the Emily who answered that call about a boy who needed a family was qualified to be a special needs mom, a short gut mom, a TPN mom, a transplant mom, an autism and ADHD mom, a feeding therapy mom, a food allergy mom. I had tried to prepare to be a mother. I had often wondered if I hadn’t been given the chance yet because I wasn’t really prepared to even be a mother. (I wasn’t so very wise then, was I?)

Some people say that special children are only given to special parents. And I don’t think that is true. At all. I’ve watched hundreds of moms in the support group I run learn about their children’s diagnosis and realize that they don’t have even the beginning knowledge required to do what is required of them.

I certainly wasn’t equipped. I was impatient. I was just learning how to handle my anxiety. I had panic attacks when schedules changed. (Umm, drop everything and run to the ER? What?) I was absolutely phobic of doctors and hospitals and especially surgical procedures.

When I took Patrick for his transplant evaluation, I had learned a lot and was a seasoned medical mom. But I couldn’t have imagined what that experience would be like. The pain he’d be in. The effect his medications would have on his moods. The trauma we’d both have to learn to live with. And though I knew being far from home and without my husband would be hard, I couldn’t have prepared for it.

Patrick and his dad in x-ray at his transplant evaluation

When we brought a “new” Patrick home, I wasn’t prepared for the growing and changing that would happen this year. The sheer weight of trying to learn a whole new way of life. A new gut in many ways opened doors to a new him and needed a new kind of mom.

I wasn’t qualified for any of these things when I started them. But I was willing. I was teachable. And I trusted that the call came from the Lord.

I have received a lot of on-the-job training. I have had solutions to problems come to my mind with such clarity and perfection that I know they can only have come from a knowing Heavenly Father through the Holy Ghost. I have shed lots of tears when I didn’t feel I was measuring up. And then I’ve gotten up and kept trying.

I have learned to rely heavily on friends and family and neighbors, on experts willing to take the time to teach me, on other parents who started out as strangers but became friends.

And I’ve learned that truly, whom the Lord calls, He qualifies.

He does it. Through His grace. If we let Him.

Special children aren’t given to special people. Ordinary people become parents to special children all the time. Ordinary people are faced with all kinds of devastating trials every day. Ordinary people step up and do impossible things every day.

There is a saying that floats around a lot. “The Lord won’t give you more than you can handle.” That isn’t quite right. Here’s what the scriptures really say:

There has no temptation taken you but such as is common to man: but God is faithful who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it. 1 Corinthians 10: 13

In other words, “The Lord won’t give you more than you can handle without also giving you a way to handle it.” He uses trials to make us better. To make us more like him. He takes ordinary, willing people and makes them into special people. Or, in simpler words, “Whom the Lord calls, he qualifies.”

P.S. Don’t take this as bragging. I still consider myself far more ordinary than special. But I digress…

Here we are. Another Valentine’s weekend. Another big change. I don’t know quite yet how Patrick and I are going to fare with Brian even busier. I’m sure sacrament meetings are about to be really interesting. And bedtimes.

I am sure that my humble, determined-to-serve husband is feeling a bit overwhelmed by this new calling. I’m also certain that he will do a marvelous job and that the people of our church are going to be really blessed by having him on their side.

And I’m going to do my best to keep up. That’s what I’ve been doing the whole time I’ve known him.

Brian loves to go for walks. When we were newlyweds and lived downtown, he would decide to walk to the city center. That wasn’t a short walk. And with his longer stride, I had to take an awful lot of steps to keep up with his pace. He has taught me quite literally what it means to “lengthen your stride.”

That’s what it is like having him for a best friend and husband. He’s always challenged me to quicken my step, lengthen my stride, and do a little better.

I’m ordinary. And short-legged. But I’m trying.

And whom the Lord calls….

From November to February

It’s been 3 months since I last wrote. 3 months since Patrick’s one-year transplant anniversary. 3 very busy, full and blessed months. And I have kept meaning to write but it was all just going by so quickly, so busily, so trying-to-keep-us-moving-forwardly that I haven’t. Since I’m catching you up, this could be a long one.

This time last year, Patrick was finally showing improvements after a very terrifying battle with “the stomach flu,” also known as norovirus.. something I will never take for granted again. And I wasn’t telling any of you, but the doctors in their morning rounds were talking about how, if Patrick was able to start to tolerate feeds again, they didn’t have any transplant-related reasons for keeping him in Nebraska. We didn’t believe them. We didn’t even dare hope it. And yet, two weeks later on Valentine’s weekend, they sent us home.

In the three and a half months between Halloween and Valentine’s Day, Patrick made such amazing strides. He proved to us that miracles do happen.

And this year, he has done it again. He has come SO far in the past 3 and a half months.

November was challenging. We had a wonderful birthday trip to Disneyland that I have great intentions of sharing with you later. We started out sentimental about transplant. But honestly, after about half a day of the celebration we were ready to start celebrating not where we’d been but where we were going. And so, celebrating his birthday was extra sweet and the beginning of some amazing new things.

IMG_20151107_163015 — One of Patrick’s favorite activities.. tracing letters. Best done hanging off of something.

When we left on the trip, Patrick was struggling with the transition to school and with potty training especially. I was spending my afternoons at the school trying to find a way to help him through his anxiety. That was a theme of November. Visiting the school and trying to help him to not be afraid and to mediate a peace between him and his aide as they were locked in a battle of wills over the issue.

And then, like that, he succeeded. And we threw a bit of a party for him. We literally danced right then and there. And then another day I was late and when I got there, he didn’t need me after all and I snuck away without him knowing I’d come. And slowly I was able to slip away.

However, with that battle of wills over, Patrick shifted his battle to be more directed at his aide. We started to have big behavioral problems with him at school. One morning, Patrick was avoiding getting ready for school and then he broke down and he cried. He crawled up in my lap and he told me how discourage he was there. And I didn’t know how to help him and I cried, too.

And after two miserable weeks, Patrick’s monthly bloodwork revealed that his Prograf levels were sky high. No wonder he wasn’t happy! He was always grumpy and angry and uncooperative when his levels were so high. So we adjusted the dose and the next day he was back to himself again.

And I did some research and some talking to doctors and some praying and realized that when we’d discontinued Patrick’s tube feeds at the beginning of November, he’d started to take his evening meds on an empty stomach.

It was a big ah-hah! So at an appointment with his GI, where we already were talking about how to push more calories because he was starting to lose weight, we decided to give Patrick a glass of Carnation Instant Breakfast, a.k.a. “chocolate milk” at bedtime. And his levels came back down and you could tell he was feeling better.

The idea at first was to give protein shakes by g-tube. Problems is, Patrick thinks it's super fun to drink from a syringe. So most "boluses" end up given like this. — The idea at first was to give protein shakes by g-tube. Problems is, Patrick thinks it’s super fun to drink from a syringe. So most “boluses” end up given like this.

Well, except that he had gotten into a habit of butting heads with his aide. I started having the teacher send home reports of Patrick’s behavior each day. With meds right, most days were better. But we still had some iffy days. And I started bribing Patrick with vanilla tootsie rolls to stay out of trouble at school.

I don’t know if that was why. She doesn’t say it was. But at Christmas break, Patrick’s aide quit and a new aide was hired. The new girl working with Patrick is young, but has a gentler touch and they seem to be getting along. Patrick has gotten a tootsie roll every day since she started. And since they have no potty training history, that problem is a distant memory.

In fact, we’ve shifted from regular accidents to waiting to let Patrick go to the bathroom. We were terrified that dairy was going to be bad for Patrick’s gut. It can be for other intestinal transplant patients. We were really told he’d never be allowed milk. But instead, since adding cheese (Patrick’s absolute favorite food to the exclusion of all other foods), Patrick’s gut has adapted better than we ever imagined.

It’s been a little bit of a difficult transition for Patrick. To go from chronic diarrhea to not. To have his belly feel full in the mornings. He wasn’t much of a breakfast eater before. But now some days it takes a lot of coaxing and imagination and bribery to get him to eat and allow his belly to wake up in the morning. He still does not love going to the potty. And we are often late in the morning as a result.

The biggest problem with this new problem is that it isn’t good for Patrick to refuse to eat. He has lost weight constantly since tube feeds were stopped. At first, it was a lot. He lost very quickly. We’ve been adding calories everywhere we can. Extra butter. Lots of cheese. (Lots, and lots…like 10-servings-a-day-lots). Switching to whole milk which is offered with every meal and also at bedtime. Allowing him to snack from the moment he comes home until an hour before dinner and then to snack again till bedtime, when I offer a “second dinner” if he wants it. I’ve tried “bolusing” extra calories when he refuses to eat. That means, using a syringe and gravity to give milk through the g-tube. But some days his belly is so full that it literally won’t flow in.

Some of the problem is oral aversion. With so many hours a day at school, I can’t really afford using dinners too much to teach Patrick to eat new foods and his repertoire of safe, familiar foods is very limited.

But some of the problem is just anatomy. I’m not sure we can afford to fit many more calories into his waking hours. If he doesn’t at least maintain his weight this month, we may have to go back to some tube feeding.

But that is the medical news. It’s what is turning my hairs grey and giving me wrinkles. But it’s only part of the story.

Sledding. Patrick says “this is like a roller coaster.”

We had a wonderful Christmas. I feel so blessed to have had a quiet Christmas at home. We bought Patrick his first two-wheeler bike. He took to it immediately and, even with snow on the ground EVERY DAY since the week before Christmas, he has been riding it regularly. We took him out once or twice a day during Christmas break. Because he’s big enough for a 20 inch wheel, you have to jog to keep up with him. (Once we lose the ice, I’ll start riding along-side instead.)

But after a couple of weeks, he fell. It took a couple of times that he was terrified and refusing to ride before we realized that one training wheel was slightly loose and he didn’t feel as steady. So daddy tightened up the training wheel and we told him that he just needed his helmet and he’d feel brave again. That helmet is working like Dumbo’s feather. With it, though he’s not quite as fearless as he was at first, he’s back to flying around the neighborhood everytime the sidewalks are clear enough.

Another big thing that happened in December is that we got Patrick into a psychiatrist. Patrick’s been seeing a psychologist for a few years now. But a psychologist can’t write prescriptions. So, after much discussion and after seeing that Patrick was becoming medically stable enough, we decided it was time to try medication for his ADHD again. Stimulants like ritalin still aren’t an option. Not with their major side effect being appetite suppression. But his doctor suggested a drug called “Clonidine” for impulse control. It’s also used to treat high blood pressure, drug withdrawal, and anxiety. And the transplant team felt that it was an absolutely safe choice to start with. So Patrick’s therapist called a colleague and told him exactly what she wanted him to prescribe.

In December we started giving Patrick a “crumb” of clonidine before and after school. The change was profound. He started to be able to sit through some of church. He started to be able to stay focused on a game or toy that interested him. He calmed down at school. He didn’t have to be reminded to pay attention to his homework. The difference was night and day.

Of course, it also decreased his blood pressure which made him so tired that he started to fall asleep by 6 p.m. So we had to adjust dosing times a little bit. Now he takes one quarter pill in the morning when he’s well-rested and it carries him through the school day. When I pick him up, he’s starting to get a bit “bouncy” and we let him stay that way. Afternoons are free play time in our house now so that he doesn’t get in trouble for the extra trouble with impulse control as easily. And then at dinner, he takes his second pill. It makes it so he can get through his homework in half an hour instead of 1 or 2 hours or more. And then he starts to get sleepy just on time for bed. And as long as he takes a nap to catch up on sleep on Saturday, this mostly work ok.

Feeling calmer, Patrick’s finally able to get back into more of the kid things that he has loved to do but couldn’t stick with before.

When a doctor’s appointment takes you up to the U of U in a terrible snowstorm…

… you might as well take the afternoon off and have a field trip to the zoo. We had it all to ourselves.

Our church schedule changed from 11 a.m. – 2 p.m. to 9 a.m. to noon. Since this is his very best time of day, and because he’s not distracted by being hungry, he’s able to go to his primary (children’s sunday school) class with an adult helper. (Who is amazing for him.) And then instead of hanging out at the back of the room oblivious to what is going on, he’s sitting with his class and much more engaged in learning.

They gave a challenge to the kids to memorize a verse of scripture last month. So I put a key portion of it on a piece of paper and he read it every day until he could recite it by memory. Then last week, he stood up and recited it in front of the other kids. He was SO proud of himself!

His reading is coming along. So is math. They’ve been teaching him how to use touch math for addition and he’s catching on and starting to believe me when I tell him, “You can be really good at math.” His writing is improving enough that he is handwriting most of his assignments. This can still be frustrating for him sometimes. And he still has a ways to go. But it’s getting better.

One night Patrick made dinner. He wrote my shopping list. Cheese, oil, pepperoni, ham, sauce…

…and then did the assembly on these delicious pizza roll-ups and pasta salad!

With his focus so much better, though, I can see how much memory still gets in his way. He really truly just forgets things. Especially names. PLEASE BE KIND if he asks you your name, even though he’s known you for his entire life and should be able to remember it. I’m beginning to believe that this is a trait of his brain injury. He still misses numbers when he’s counting. He still gets stumped on words I know he knows when he’s reading. And I think it’s a problem with recall that he can’t help.

That makes it all the more amazing that he’s succeeding at memorizing scripture. We’ve picked two more to work on this month. There are some very amazing and specific promises related to scripture study. Especially study of the Book of Mormon. And I have seen that EVERY time that we have used scripture to help Patrick work on a goal that we believe might be impossible because of his injury, I have seen him meet and exceed those goals. Those promises from the Lord are real and can work miracles.

… and hockey games. (Often just the 2 of them.)

Anyway – I have a lot more to catch you up on. And we have a lot of new milestones ahead of us this month. And so I’m going to end this lengthy post here for now with the hope that I’ll be able to fill in more later.

We are grateful to those of you who have helped us through these last few months. It is not easy to learn to eat, potty, read, write, add, attend school, attend church, make friends, control your temper, and pay attention all at once. I know I couldn’t teach it all myself. So thanks to those who’ve been there to help. And to listen and offer counsel when I’ve been discouraged.

Thanks to transplant, we have a lot of living and learning ahead of us. More than we hoped could be possible. And this has been a big growing season for us as we’ve come to realize that there is a path that lies ahead, and we have begun to try to learn to navigate it.

This parenthood thing.. it’s a lot harder than I ever imagined. It’s forcing me to become a better person than I knew I needed to become.