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.

Transplant Day 70 and real-life angels

God does notice us, and he watches over us. But it is usually through another person that he meets our needs. – Spencer W. Kimball

Brian flew home Monday. I was kind of worried how this would play out as the last time he left while Patrick was still inpatient, I found myself feeling in well over my head trying to juggle caring for Patrick and trying to piece together little things for myself like food and clothing and bathing.

However, instead, I’ve found the last couple of days almost relaxing. An important lesson I’m learning here is to let people help me with little things so I can be free for the bigger things. For example, Monday morning a hospital volunteer knocked on the door just as I finished dressing Patrick to ask if I needed a break.  So, she came in and played with Patrick while I took a shower, did my makeup (a rare luxury), made the bed, and cleaned up the room.

This week has been full of volunteer angels. From church, I find women I barely know (have met a few times or not at all) providing meals or coming and sitting with Patrick so that I can go back to the Ronald McDonald House to eat or shower or do other things. There is an after-holiday lull in charitable donations and so fewer meals are offered at the beginning of January than throughout the rest of the year. So, one evening while a lady from the Relief Society (church women’s organization) was introducing Patrick to the joys of a fart machine, I hurried back and made up a week’s worth of taco meat so I’d be ready for days I either couldn’t get away or nights where dinner wouldn’t be waiting.

This has been a blessing I can’t put into words. I am not unhappy that in our first month here, we ate such carefully portioned meals, a-la Hormel no refrigeration required microwave dinners, that I lost several pounds. But sometimes it was hard to be patient with Patrick and happy with this 24/7 mom/caregiver role I’m living because I was hungry. But right now, I am anything but hungry. I have to think to not end up being fed dinner twice. I haven’t even touched the supply of meals I bought right before Brian left because there has always been another one there someone has made for me.

But beyond food, this has given me the chance to keep up on laundry (with a little bit of help from a friend willing to fold and slip into my room my clothes if I can just get them to the dryer) and to stay showered and in fresh clothes (which I find goes a VERY long way to my general sense of well-being), and sane. I get an hour or two here and there and in it I try to be as productive as possible. I probably look like a mad-woman flying through the Ronald McDonald House when I go there.

Patrick is happier with this help, too. Someone appears offering help and he shoos me away to “the House’ so he can play. Patrick needs people. He loves when someone comes and he has someone new to play with.  He really loves the volunteers who come help Child Life with activities. We had an awesome time the other day flying airplanes with the ROTC. Right now, Patrick is one of just a handful of kids old enough to play with, so they are especially excited to see him, too.

It helps so much to have people. Tonight, I got a call from a woman from church who is quickly growing on me, saying that she had some time and could she come play with Patrick so I can get out. I almost felt like I was taking advantage because I’ve been so well taken care of, but I’ve sworn to myself to accept help when offered. So she came and I almost didn’t even leave because it’s -3 with a wind chill of some other horrid number and everything is closed here as a result. But I remembered that Patrick’s been running a touch low on diaper cream and I had one more jar of his preferred kind at the house, so I went to go.

But, when I got to my car, it just wouldn’t start. I’d turn the key and it sounded almost like it was sighing. I had a jump starter in the trunk, but even that didn’t help. It just showed me my battery’s power dropping from 60% to 40% to unreadable.

So I came back in and I bought diaper cream at the outpatient pharmacy instead. Then I called Brian and I called my dad to assess the symptoms. And then i came back to the room feeling a bit beyond alone and helpless. Only I wasn’t alone. There was this sweet angel from the ward making playdough P’s with Patrick on the floor. And she listened to me talk through my problem and she offered all the help she could think of. And then she just talked for a while which is something I am REALLY missing here… talking to grownups and especially friends of my own faith.

And things felt lighter going to bed. In fact, Patrick and I stayed awake and giggled and talked for a while. Sometimes, he and I get playing a little more like it’s a sleepover. And last night he told me that when he grows up he wants to be a firefighter and put water on things. And that when I grow up I want to be a doctor… not like the ones in the hospital, but like the toy one in his Duplo block set that he got yesterday.

Which reminds me of another super nice thing that strangers did for us. Right before Brian left town, he discovered a couple of Christmas presents hidden under the bed that we’d overlooked on Christmas morning. Well, they couldn’t have been more perfectly planned if we’d done it on purpose.

When we got married in December, I was really sad that the wedding and honeymoon took up most of the Christmas season for us. So we decided to extend our family’s Christmas holiday like they do in Europe. There, the 12 days of Christmas actually start on Christmas day and are counted forward until January 6th, also known as Epiphany. Or, in Italy where Brian was a missionary, it’s called Befana.

So, we have celebrated Befana. We leave out our shoes and a good witch fills them with little gifts. After Patrick went to sleep Monday night, I snuck down to the C store and picked up some treats for my shoes, then I put the newly found presents and some chips and a book into Patrick’s. And when he woke in the morning, we had our own little holiday. And he got a couple of fleece sweaters that have been perfect for these bitter cold days. And he got some duplo blocks that have proven to be great entertainment, too.

General Patrick update.. Tonight, they turned off his TPN again, hanging some IV fluids to keep him hydrated. He will reach full enteral (through the belly) feeds on Elecare Jr. tomorrow late afternoon. They will check some labwork in the morning and we’ll start talking about discharge again. (Which means that I will also be making some phone calls in the morning to see if my insurance’s emergency roadside service can help me fix the battery issue so we have a way to leave here.)

Patrick feels great. I’ve learned to change the dressing on his surgical incision and will need to still do that for a few weeks. He is not a big fan of the job, but has gotten so he doesn’t cry the whole time.

We spend our days mostly playing. Today, they got the playroom ready for patients to play in. It is still missing locks on the toy cabinets, so you have to have help and permission to play there and have to keep the door closed while there. But that just meant that Patrick had to have 3 hours straight playing there instead today. And the room all to himself.

While he played, I downloaded more of his homeschool materials and the hospital teacher helped me print some readers. A “cold day” made it so Patrick missed his post-holiday return to school this week.. again. He’s only had 4 actual “school days” since we got here. I just learned a couple of the ladies from church homeschool and I am getting ready to pounce and pick their brains to figure out how to make my mommy school efforts even better.

We’ve been working on just one more goal here. A few days ago, Patrick was complaining that his left leg and ankle hurt. This isn’t the first he’s complained of it, so I asked for a physical therapy consult. She came seeming ready to assure me my concerns were over something normal that would pass. She watched him walk and stand on tiptoes and squat. And as we worked, she shifted from telling me that his hip looked weak but would get better to a genuine concern about what she was seeing. This is somehow maybe related to his cerebral palsy and we don’t know if it’s really a new problem or just one made worse by recovery.

She gave me some exercises to try to get Patrick to do.. lifting his legs to the side and walking on his heels. Because of his dyspraxia (motor planning troubles), this seems really, really hard for him as he’s never tried to move that way before. At first, he just wouldn’t. But I’ve figured out that I can turn it into a game of silly walking mother-may-I or a “can you do this?” challenge and he’ll play along.

Nevertheless, my plan of doing occupational and feeding therapy only with my limited visits while he’s outpatient is kind of disintegrating. If this problem doesn’t go away before we leave here, we’ll need to do some follow-up therapy. And I really need to find the number and call and get that scheduled.

I think Patrick feels more in control of himself here at the hospital. Maybe because the rules and routine are more predictable. Maybe because he’s spent more time here. Maybe just because his medication levels have been steady while he is here. Maybe because it’s not Christmas anymore. Maybe it’s because he can order ham and chicken broth for every meal. Or because my attention is less divided and all of the ways he acts out are him trying to have my undivided attention. I don’t know for sure, but I’ve also been using the extra time I have with helpers here trying to pull together some picture schedule and behavior reminder resources so going back to the Ronald McDonald House can maybe feel less chaotic.

Regardless, I can see that our time here is special and important. And I am beyond grateful for the helpers who have let me use this time well instead of just trying to survive each day.

 

Transplant Day 56 and Christmas Day

We had a very unique, but very amazing Christmas day this year.

It all started with a little bit of excitement. Every night sometime between 2 and 4 a.m. I have to get up to refill the formula in Patrick’s feeding bag. So at 3:30 I was up and it seemed to go really smoothly and I stuffed the little stocking that Patrick had hung on the IV pole by his bed. And then I went into the bathroom and the pump started to alarm.

Well, I got there quick enough that it didn’t wake Patrick and I fixed the kinked tubing. And then I noticed a very distinct smell. The smell of Patrick’s ostomy bag leaking. I felt around the pouch and it was definitely starting to come off. That usually would mean waking him to change the bag. But I looked around a room full of presents that Santa had already brought and I knew that if I woke him, we’d be having Christmas right then.

Now, my previous history of early Christmas mornings aside, I also knew that Patrick would not have time for a nap in the rest of the day without missing out on some big fun things. So I took a risky chance. I crawled in bed with him, wrapped him in a towel, secured the bag the best I could, and slept next to him. I knew we’d be starting the day off with a big mess and that we’d have to work hard to keep it from making his skin sore. But it seemed the best choice for a good Christmas day.

I had nightmares about ostomy bags the rest of the night and at 6:30, when Patrick started to stir a little, decided I’d waited long enough and let him wake up. I explained he was wet and needed to go right to the bath. He wasn’t so sure, but I didn’t give him a choice.

We got him cleaned up pretty quickly and changed into his spare Christmas morning pajamas. (We learned long ago that we need two pair of special Christmas PJ’s.) We asked him if he thought Santa would have come and he said no. Somehow, he’d missed all the presents on the way through.

But when he did see them, that’s all he wanted.

We let him start with his little stocking. That was simple stuff. A Dora doll, some hot wheels cars, some silly putty. Then Brian pulled out the big stockings.

I’ll confess. I was pretty worried about Christmas stockings this year. I could not figure out how to go about getting that part of Christmas ready when Patrick needed to be with me and time in stores was limited. Heck, we tried to buy stockings once and had to leave the store without. So when a package from Brian’s work showed up full of gifts, including stockings, I was relieved.

Patrick’s stocking was huge. It took half an hour to go through. Of course, that was the tip of the iceberg for Christmas morning. Between family, friends, DDM, and  gifts donated through the hospital and  the Ronald McDonald House, we were very well taken care of this Christmas. When I look back at myself a month ago, lying awake in the hospital in tears and unable to sleep not being able to imagine how we could possibly pull together Christmas this year and contrast that with the abundant and generous outpouring that we received I am humbled and grateful.

A phrase from a verse in Malachi kept running through my head.  Malachi 3:10:

“prove me now herewith, saith the Lord of hosts, if I will not open you the windows of heaven, and pour you out a blessing, that there shall not be room enough to receive it.”

Indeed – it took most of today to make space to put away Patrick’s many gifts and there is a small collection in the corner of the “too much” that we will probably pass on to other children.

After opening gifts in our room, we let Patrick pick a couple of toys and we headed down to the kitchen to take care of meds and formula. It was fun to see children pop in and out with Christmas presents and smiles on their faces.

Finally, 10:30 rolled around and Santa was due to arrive. Christmas with Santa in the Ronald McDonald House is going to stay forever in my memory. Each family had a pile of presents with our names on them. Most were simple, some were astoundingly generous. Santa went around the room telling the kids about how he’d picked certain things just for them and which gifts were most popular.  I’ll never forget the tears in the eyes of one mom whose family had arrived for emergency surgery just a couple of days before who really did think they’d be missing Christmas this year.

And then, after presents, we gathered for Christmas brunch. The Hilton had sent a gourmet meal over with roast beef and turkey and potatoes and stuffing and the yummiest green bean casserole on the planet and about 20 different desserts.

We ate well and then had to reign ourselves in because we knew we had other plans.

In fact, right after brunch, I went up to the room to pack our things to go for the rest of the day. A couple of my very close friends from college married and live two hours away in Iowa. And they invited us out for Christmas dinner. So, we took a drive yesterday. It was fun to see country life in Iowa. And it was amazing to spend some time with friends.

Drue and Rachel have to be two of my favorite people on the planet. They’ve been through a lot in their 13 years of marriage. And now seem so happy and in their element. Both grew up in smaller towns and so it is natural that they’ve settled down in bigger small town in Iowa with 5 acres of land and a historic house they bought for $1 and moved to the lot.

While they finished up making dinner, (smoked leg of lamb and homemade gravy and Idaho mashed potatoes!!) their daughter, Julie, took Patrick out to the chicken coop and he came back with his shoes all muddy.. So then he had to play around in stocking feet all the rest of the evening, which he loved. And they gave him a real metal slinky and showed him how to use it on the stairs, and he loved that, too. And mostly, he was tired because we gave up naps to try to get him to sleep at night and he might not really be ready for that.

BUT he made it and we had a lovely dinner and played Catch Phrase afterwards and reminisced and caught up. And we got to see the stars (something I hate that Patrick misses having to always be in the city so he is close to medical care and clean.) And then we drove back and Patrick managed to stay awake the whole way, which mean he would sleep.

But we ended the day almost as excitingly as it started because one of the bottles of formula opened and spilled in the cooler and so we had to make a new batch of formula and clean up the sticky mess. So we got to bed a bit late and then Patrick woke up at 3 and insisted I come sleep in his bed. So my dreams of an early bedtime and a then sleeping in till 9 were both dashed, but it was still a wonderful Christmas.

And today was mostly quiet with a trip to Costco (then a trip back to the room to replace the feeding button that Patrick accidentally pulled out as he got out of the car. That was traumatic and he talked about it all day.).. Then we took another trip to Costco where we actually bought the totes and batteries we went for. And we spent the day resting and cleaning and playing with new toys. And today we DID make it to bed on time. And maybe tomorrow we’ll even sleep in.

I will never, EVER forget this Christmas. This season brings out the best in us. We are kinder, more generous, more Christlike. And as I read the Christmas story with Patrick this month, I could relate more with the story of Mary and Joseph far from home, staying in a stable of all places as their baby was born. But Heavenly Father knew where they were. And He sent angels to tell ordinary, humble working men – shepherds. And then those shepherds went and it was through those ordinary people that the Lord sent the message that He remembered and He knew what was happening and was was going to happen.

And we, through the ordinary people, have seen the hand of the Lord this Christmas.

Some of you are reading this. I need to say thank you. You may think that what you have done was something small. But this Christmas was anything but small for us. So thank you.

Transplant Day 55 and Christmas Eve

Oh what a difference a good night’s sleep makes. Patrick slept 10 hours last night. Which means I got a good 8 hours with only my routine fill-the-feeding-bag interruptions. We all felt so much better.

We’d have slept longer, but today was lab day. That’s ok. We needed to get up and get moving to fit in all we hoped to do.

One of our favorite Christmas traditions since before we had kids is to visit the zoo on Christmas Eve. People don’t think of the zoo on this day. They have other things to do. Therefore, it’s quiet and uncrowded. You can take all the time you want. Animals behave differently when it’s a little cold, too.. so you get to see a different side of the exhibits in many cases.

And guess what? Omaha is home to one of the world’s best zoos: the Henry Doorly Zoo. And so of course, as soon as we finished the morning meds and formula mixing (complete with me forgetting to vent my bottle after shaking it so the baking soda made it explode all over the kitchen) we headed off the zoo.

Well, with a stop at Taco Bell for breakfast. Patrick willingly took bites of an entire hash brown this morning. That is a HUGE deal.

Anyway – we got to the zoo and discovered it was bitter cold. Thank goodness this zoo was also designed by people who live here in Nebraska where the humidity makes all weather feel extreme. Most of the exhibits are indoors. So we hurried into the Lied Jungle where we warmed up in a rainforest climate. Patrick had a great time running around here and elsewhere in the zoo.. but he would get tired and try to get us to carry him and then we were grateful for his stroller/wheelchair. He’s still got a ways to go recovering.

We had a lot of fun this morning. There are lots of babies at the zoo right now and we got to get up close views of several of them. Patrick and Brian had a great time playing with one of the gorillas. We saw an extremely rare white lion cub. And then, we were tired. So we headed out… but not before acting on the idea to turn one of the very generous cash gifts we received this week into a membership to the zoo so Patrick can come back as often as he wants while we are here. The zoo in off-peak hours is an approved immune-suppressed activity.

Anyway – after the zoo we came back for lunch and some quiet time in the room. Then Brian and Patrick started some laundry while I went to the store for a few last-minute things.  (Including stocking stuffers. I opted not to get stockings after some filled ones showed up in a package from DDM. But then Patrick got another stocking from a friend that he was allowed to have early. He told me yesterday Santa was going to fill it back up again… On a sidenote, I’m glad Patrick knows now what stockings are for as the first few times he saw them, he asked if he could wear them.) Then, Brian took Patrick off for a walk to let me wrap the last couple of presents in the room.

Dinner tonight was catered pasta. An amazing family took the time off this evening to arrange that on a night that Ronald McDonald House doesn’t always see people willing to give up the time to provide us a meal.

We spent the evening working on crafts with the rest of the house. Wendy and Kate went all-out with clay ornaments and ice-cream-cone Christmas trees tonight. It was a lot of fun to see everyone’s families arriving tonight to spend the holiday with them. The mood of the house was pretty light and happy today.

Patrick, for the first time I can remember, is genuinely excited for Santa to come. He just kept showing me that only the white ring was left on his advent chain. And then he’d skip and run down the halls.

We followed some other traditions tonight: opened Christmas presents. He was so excited by the minion pajamas Grandma sent that he decided to go into the bathroom and dress himself. (We asked him why in the bathroom. He said “A dunno” (a common phrase right now) and away he went. Then he stayed and drew on the mirror with the dry erase markers I use to chart fluids there for another 15 minutes.

We opened another traditional package – a Christmas book that we share with his birth parents. This year I picked “How the Grinch Stole Christmas” which seemed a bit over his head, but I thought appropriate for the year.

Except the no presents thing. Patrick had a little trouble setting down to sleep at first, but when he was sleep he was out cold. So Brian got out the presents that were hidden under the bed. This room is overflowing with presents from the hospital, from family, from friends, from co-workers. And I know there are more outside of this room, too.

And so, that was our Christmas eve. Different. Simpler. Uncluttered. Very few last-minute preparations. No hours spent on a fancy meal. A later bedtime than I’d usually allow. And lots of new friends.

Thanks to the kindness and generosity of others – this year is different, but not nearly as hard as I thought it would be as I laid awake in the hospital worrying about it a month ago.

Right now, my biggest worries are where we are going to put all these gifts once they are opened.. and how to convince Patrick to take a bath and put on clean pajamas (yes, that’s a short gut Christmas tradition) before diving into the pile of presents that are in the room he’s waking up in.

Transplant days 53-54, insomnia, and Christmas carols

Photo Brian took while we were singing Christmas carols. Notice that when Patrick is tired he can't stop moving, hence all the pictures are motion blurred from this day.
Photo Brian took while we were singing Christmas carols. Notice that when Patrick is tired he can’t stop moving, hence all the pictures are motion blurred from this day.

Last night was a tough mix for us. Patrick slept the best he has in a week. Brian and I did not. As I put Patrick down, I noticed that there was some blood in his ostomy bag. An intestinal bleed could mean scary things for him.. But we also knew that it was Sunday night and not the most efficient time in the hospital. So we decided to wait and watch. And within an hour and a half the bleeding had stopped.

But for me, that meant setting the alarm clock every 2 hours during the night to make sure it didn’t come back. If that weren’t enough of a loss of sleep, at 4 a.m. Brian got up to go to the bathroom. Patrick woke up and insisted someone needed to lay with him. As much as I love the sweet little boy cuddles, Patrick hogs the bed.

We did finally all get to sleep, but unfortunately, Patrick had labs due this morning so when the alarm went off, I could only snooze it a couple of times before having to wake us all up.

After labs, we left Brian in the room and Patrick and I went downstairs to get him his meds and make his formula. The formula especially is quite a production to make. This morning, though, more than usual. While I was still working on it, the front doorbell of the house rang. I was the only one downstairs, so when it rang a couple more times, I went to answer. Turns out the girl from the office had locked herself out with a couple of people bringing by donations.

Well, Patrick sometimes bebops over and lets people in if they wait long enough. So he went and let them in. It turned out to be a family from a montessori school coming by to drop off some donations. They were waiting for the rest of the class, though, so they came in to wait. Then the bell rang again and this time it was people coming to put that night’s dinner into crockpots.

So here I am, in the kitchen trying to mix up Patrick’s 2.5 gallons of crazy complicated formula with people buzzing all around me making dinner. (And me telling them where to find everything.) And I look up and notice that there’s a little boy Patrick’s age that came over with the Montessori group looking bored but trying to be good. So I grabbed Patrick and went over and introduced him and got them a game to play together.

Eventually, the rest of the Montessori class arrived and they took some pictures together (and with Patrick.) And then my phone rang and it was the transplant team returning my call. And when I came back, Patrick had somehow gotten them to give him one of the gift bags that they’d brought along. As it happens, it was filled with Sesame Street themed things that we now find invaluable.. an Elmo bread crust cutter-offer and a couple of dry erase number and shape writing workbooks. (These happen to be the two fine motor practice things that i didn’t have in dry erase form.)

P.S. the doctors said that the apparent blood in the output was likely an anomaly and not to worry about it unless it came back.

We came back to the room to find Brian on a work call so I made a hurried effort to get Patrick his mommy-school readers printed for the week so we could get out of the way. We went downstairs and spent an hour doing mommy school. I could tell Patrick was tired then. He was happiest just snuggled up doing educational games on my computer.

And as the day wore on, he got more and more tired.

At dinner, we got to eat the chili that had smelled so amazing in the house all day. Then we tried going for a drive to look at Christmas lights. But I got us lost. And Patrick fell asleep. It was kind of a bust.

— picking up this post a couple of days later—

Patrick falling asleep wasn’t the greatest of things for him. He was still exhausted enough to be totally irrational. When he’s tired, the steroids kind of take over and all rational thought shuts off. We were all already tired, but nothing we could do would convince him to sleep. Brian and I went the rounds with him until 2 a.m. when Brian had him downstairs in time out for screaming in the middle of the night. I decided we needed to just find a way for the grown-ups to sleep so I drew up morning meds so we wouldn’t have to go out of the room for them. And then suggested we just turn on the TV for him.

Well, when Patrick saw the room, he decided he was ready to lay down again and went to sleep without much more fight. We slept till a little after 9 when giving morning meds was enough to wake Patrick.

It was kind of a rough morning. I don’t do well when I’m tired. I cry a lot.

But once we got past the morning, we were able to lay down and rest a little and that helped us reset. (Not sleep… just rest. We received several dozen.. maybe even 100.. homemade Christmas cards this week from a middle school, a primary, and Brian’s work so we sat down and read all of those.)

I called the team back one more time because Patrick’s output had been black looking during the night. They came back again and said his labs looked good and he didn’t seem to be feeling bad and that maybe it was the food he was eating. As in, the dyes in the food he was eating.. (That night instead of letting him have a cup of soup at dinner, I served him ham instead of soup. Sure enough, no funny colors.)

After dinner, though, we had something I’ve been looking forward to ever since I started playing the piano here. Our Christmas sing-along.  I spent the quiet moments in the day typing up and printing lyrics to several Christmas songs. We gathered up those of us in the house who’ll get together to do things like this. Plus, the sister missionaries came over. They had offered to come visit and that happened to be the only day that they could come.. and the best day for us to do the sing-along. I figured more voices could only help.

It was a lot of fun to gather around the piano and sing. Everyone was a great sport. We sang everything on my list, and then when we needed to fill some time before our next activity, we took requests. I hope everyone got to sing or hear their favorite.

Then everyone visited for a while and then went upstairs to work on a craft that one of the House employees had put together for us. Patrick and I really kind of enjoyed that while Brian drew up meds.

And then, Patrick laid down in bed and was asleep in about 10 minutes. I think I wasn’t far behind. Looking like we are going to need to explore a new phase in Patrick’s life. Giving up naps.

It is amazing to see how much this has made him grow up. Have I mentioned he also weaned himself from pacifiers? After 6 years and not knowing how he’d ever quit them… the hospital experience was enough to just make him not like them. I offered them back a few days after we got to the Ronald McDonald House. He tried them but didn’t like them. So I sat down and explained that kids grow up and then they are big kids and grownups and don’t like paci’s anymore. He thought about it and then said, “Me too, mom.” He was done. I told him that as soon as I get a chance, I’ll remove the pacifiers from his wubbanub friends and he’s great with that idea.

And that has nothing to do with anything except that I hadn’t told you. So that’s a summary of the hardest 2 days of the week. Next post, Christmas Eve.

 

Transplant Day 48 and some Christmas Cheer

It’s been a busy couple of days. Without labs in the morning, I’ve been trying to work on a little bit of a better sleep schedule.  I don’t know that we’re getting more sleep, but at least we haven’t been up till midnight.

Yesterday we didn’t have labs and Patrick actually slept till 8 a.m. Then we took our sweet time getting ready and out of the room, which is always nice. It usually means I get some cleaning done.

Because Patrick had slept so late, I decided to try out skipping nap.  That meant I needed to keep him entertained for the day instead. I stole a little bit of internet time in the morning while he played in the playroom and I downloaded the new homeschool curriculum I want to use for “mommy school.” (I’m using Reading the Alphabet, if you are curious.) Then we came upstairs and I printed out a little reader to practice with and a reader.

Patrick was so excited to do mommy school. I think he’s feeling as bored and stir crazy as I am. He mastered his book in about 5 minutes. The series I’m using is a sight words preprimer series.. So pretty basic stuff. Just sight words mixed with pictures that he should be able to decipher. This is what he was using in school before transplant so it seemed like a good place to pick up. It’s probably a slower paced curriculum than he’d be getting in a typical classroom, but i figure that anything is better than 3 or less hours a week and the pace seems to match his learning style. Once he had mastered his book, we did a little bit of writing practice with the word of the week, (“a”) and the letter of the week (“Tt”).. and then we took his book to practice reading to other people. Both he and they love this method of practicing reading. I have the feeling that taking his books to the office staff to practice is going to be pretty par for the course.

After a little bit of resting/cleaning time in our room, we got ready for the evening’s excitement. Last night was the hospital’s annual pediatrics Christmas party. A company called Renaissance financials hosts this every year for the inpatient and outpatient pediatric patients. That means that you don’t have to be in the hospital to be invited. They know there are a lot of us here who’ve traveled quite some way and will be here long-term.

The party started with a magician. It’s amazing to me to see Patrick old enough to appreciate these things. He laughed and was awed by the tricks. He really wanted to be a helper, but didn’t raise his hand to say so.

After the magic show, we found our tables and worked on making jingle bell necklaces, marshmellow snowmen, and gingerbread houses made out of graham crackers and take out boxes. We were joined there by one of the employees helping to host the party.

That kind of made this the perfect blend of holiday party for me. It had all of the kid-friendly elements that I’m used to from a school or church party. But there were employees and their wives there for their annual company Christmas party, too.. All dressed up. It kind of helped soothe the part of me that is really missing corporate Christmas dinners.

We had a dinner of pizza and breadsticks. Patrick enjoyed some crust and declared the julienned carrots from my salad “perfect.”

And then, they made us all sing Christmas carols. They top this off with a tradition where each of the 12 dinner tables has to make up and action to do to their assigned day of the 12 Days of Christmas. I hope our 5 golden rings had enough flair.

Then, the night was topped off with a visit from Santa Claus himself. They came and called the kids up for their turns one by one so there was no line or crush. Each kid got some personal time with Santa. Patrick took his to open the present that Santa had brought him.. A big noisy 3-wheeled motorcycle that races across the room when you push a button.

Patrick’s attention was gone pretty quickly after his visit with Santa. We snuck out as things started to wind down and ran to the store to get a few things to make some little gifts for the many people we have gotten to know here. (I’m making angel ornaments out of ribbon, a paperclip, and a bead.) Patrick thinks Michaels is the best store ever.. specially since they had little shopping baskets with a handle he could pull like a rolling suitcase.

And then we came back to the house where all the kids were playing with the toys Santa brought. It reminded me of Christmas morning… which makes me really look forward to Christmas. We have lived with these kids for a couple of weeks now and they are getting to be friends. It was fun to see them sharing toys with each other.. racing around shooting each other with nerf guns and taking turns with the remote control car.

It was especially needed last night as one of the families staying in the house lost their son last night. It is hard to put into words the way that a loss like that hurts in a community like this. We understand more deeply than anyone can the pain of that loss and just want to take it away.

Today has been a pretty low-key kind of day. I got Patrick to sleep last night by 10, but that meant he was wide awake and happy at 6:30. He chose to play on his bed for an hour, though, and when he was ready to go was pretty good downstairs.

The grandparents of the boy who passed away stayed here last night and Patrick has been particularly attached to them all day.. Cuddling up with both of them and playing charmer. He really has a way of knowing what people need sometimes.

Then, when he did leave them, Patrick went to visit his friends in the office. He has made this a bit of a morning tradition. I don’t think they mind much. House rules say they are supposed to give us our space.. but if we go visit them, that is ok. Patrick likes to go visit.

Over lunch, Tyson, the 18 year old transplant recipient, took Patrick downstairs to play in the playroom while I showed his mom how to make homemade frosting and how to roll out and cut sugar cookies. (It’s funny how this is something I have just taken for granted knowing how to do. After a lifetime of baking with mom and grandma, going to church activities, doing crafts, and learning other homemaking skills.. I guess I kind of assume that most people have some experience with these things. But they have been wowed by my skills here and it’s kind of a strange feeling. The things you discover when you leave the Mormon belt.)

I got a call this afternoon from hospital social work asking me to come pick up Christmas gifts. While we were still inpatient, they came and asked if one of the hospital departments could adopt us for Christmas.. given how far we are from home and knowing what our co-pays were going to be. We tried to decline and offer this to someone else, but they insisted that we fit the bill to help. So, we made a simple list for them.

What I picked up today was not simple. My trunk is full. And there was a gift card included too that kind of blew me away.

Anyway – once we finished that outing, Patrick asked to try to play at a park. We went, but he got too cold too fast again. So we came back to the house and let him play in the playroom while I paid some bills and then pulled out my new Christmas music books and played on the piano. This is another thing that I kind of have taken for granted in the past. People who play the piano are limited back home, but there’s a few of us in every neighborhood at least. Here, though.. some of the staff say they have never seen this piano used to play actual music. I am so excited to try a sing along.

Next was dinner. One of the drawbacks of the Ronald McDonald House at Christmas time is that all the dinner groups very well-meaningly try to bring in a festive holiday meal. You don’t want to know how many hams have been served here this week. Patrick is loving it, though. Ham and potatoes is one of his favorite meals and he will happily eat it over and over again. It just makes me smile and remember my missionary days when we’d be fed at member houses and we’d see food seasons. I wonder what food season comes after Christmas.

Then, I ended up letting Patrick stay up just a bit late because we decorated cookies tonight. It was so much fun and I was really grateful for Wendy, a mom and friend in the house, and all of the resources and work she put into getting Christmas cookies into the house.  The kids had a great time. Patrick loved it and, yes, I let him splurge and have some frosting tonight. (He’s supposed to be on a no concentrated sugar diet at least until things get a little more stable.)

Our word of the day was “angels”. We read about how angels appeared to sing about Christ’s birth. And then for good measure, I pulled out my YouTube video and watched this awesome video… a record breaker for multitudes of angels in a live Nativity, and heart-touching to boot.

And now Patrick’s finally made it to sleep. I’m thrilled he is asleep before 11 again.. But every night I have grand intentions of getting up and getting to work once he is asleep. I have a couple of presents to wrap and the room needs cleaning and the laundry needs put away. Especially since we have labs tomorrow. But I can barely keep my eyes open. So I’ll be settling on finishing up this post, hunting down an internet connection so I can post it.. and then going off to bed.

 

Transplant Day 45 and Gingerbread

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Well, it’s about 6 p.m. on a very quiet Sunday evening here in Omaha. Patrick is taking a little time in the playroom and I thought I’d throw out a quick update.

It’s been a simple day. We slept in a little bit because we were told no labs. I had Patrick in the bathtub when there was a knock at the door. It was his home nurse. She hadn’t gotten a change of orders. So while she called looking for those instructions, I got Patrick back out of the bath and dressed just in case. But she got it sorted out and went on her way.

That put us a little ahead of our expected schedule for the morning. We ate breakfast and got meds and then pulled out the Dora Candyland game they have here to play while waiting for our next plans.

I decided that maybe a Sunday morning outing would be a nice change of pace today. The Mormon Trail Center has a gingerbread house display every Christmas. I’d heard about it from more than one of the nurses. So I invited any of our friends at the house willing to be up and out earlier in the day to meet us at 10:30 to go over. (I am still hiding from crowds to protect Patrick from illness with his weakened immune system.)

We don’t have many early risers in the house right now, so only our friend Wendy joined us. Her son is 18 and had a transplant a year ago. So while he slept, she came with us.

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The gingerbread houses were fun and impressive. There were simple displays from scout troops and other kids groups. There were also very elaborate displays with sculpted candy and such. It inspired us to want to set up a gingerbread house making activity here at the house.

Then, we went upstairs in the visitors center and took a brief tour. I should maybe get tired of that, but I really don’t. I see so many parallels between the sacrifices that pioneers made crossing the plains to our life right now. Separated from husband and family. Small living quarters. Nebraska weather. And hard trials. I was really glad we got to go.

And they finished off the tour with this little video about the true and first gift of Christmas, Jesus Christ. I’ve been meaning to share it with you. Now seemed like the right time. I was talking to Brian last night. He’s doing all the grunt work of Christmas this year. Mailing cards, wrapping presents. Meanwhile, I’m here with my little nativity advent tree and only serving Patrick and the other people in the house as my jobs right now. It’s a different Christmas season and teaching me a lot.

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Anyway, we came back to the house and ate lunch, put in some laundry, visited with some of the other kids for a while. Patrick was sent a 12 days of Christmas gift countdown by our church youth group and today was the first day to open a present.

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Then the elders came with the sacrament. Our usual guy was busy this week and so this was a new father-son duo that came to visit. They got a bit lost on the way. It always seems so very brief when there are no meetings around the sacrament. I miss church horribly right now. I’m realizing that I had found a way to work scripture study and prayer into our hospital routine.. But this new Ronald McDonald House routine has been harder that way. Patrick can’t sleep in because of labs and that’s when I was reading before. And with his insomnia, he is up till almost 11. You think finding time to blog is hard? Try finding time for quiet study and meditation when you have a 6 year old who is desperately stir crazy with you in every waking moment.

But I can tell today that it needs to be a priority. Sundays are kind of a day to refill spiritually and I can tell that my lamp is running on empty and there are no meetings of any kind to refill me. That falls to me these days.

There’s no dinner in the house tonight so I probably had better go up and make us some dinner here sooner or later.  But I thought that while I had a quiet moment and an internet connection, it was worth checking in. Sorry about the typos in yesterday’s blog post. I wrote from my phone and I obviously didn’t do a good job proofreading.

Transplant Day 43 and Celebrating 11 years

(Sorry.. Internet connection isn’t doing syncing pictures right now. Will edit and add later if I can.)

Today is our wedding anniversary. The week has been so crazy that I wasn’t sure how today was going to turn out. We got the day off of labs so we slept all the way till 8 a.m. But then when we woke up, getting ready quickly was important. Still have to get meds from the fridge downstairs by 9 a.m.

But the morning routine is getting better. Brian sent a package yesterday and so I opened that while Patrick was in the bath. It had a few thoughtful little gifts in it. It made me really, really miss my best friend. But one of the gifts was a necklace that I have been able to wear all day to remind me of him. I have been so glad that we went big with a Disney trip last year as we’ve had to spend this day apart.

Thankfully, it’s been an overall happy day. A group home nearby comes every day to clean the playroom toys. Today, they were later than usual, which meant that we got to spend the morning downstairs playing. The rest of the house was really quiet so it was a great time to get to be out of the room. That’s how you got multiple blog posts today.

I ordered Brian a pizza and pizza cookie. I really wanted to find a way to send him warm cookies for our anniversary.. And to tell him that I’ve been working on other plans. The pizza place was kind of enough to put a note in the pizza for me, even. Then Patrick and I went upstairs.We stopped by the office because they kept coming and telling me I’d received flowers. (Don’t I have a sweet husband? It’s fun to get flowers in a place where people get excited about them coming.)

Then I made lunch and I fully intended to put Patrick down for a nap. But then my phone rang and it was his homeschool teacher cancelling class today because he had a fever and was going home sick. Then, people started to come inside and tell us what a beautiful day it was outside. Patrick had been begging me to take him for a walk in one of the house’s wagons. So, I gave in.

We had a great time. (And I met my FitBit step goal for the first time in almost a month.) And, yeah, it was so nice that I still didn’t feel right making Patrick go sleep the day away. Instead, I offered to take him to the park. One of the moms here pulled out a local guidebook that they’ve put together and gave me the address of a nearby park. It was only a few blocks away and it was perfect for Patrick’s mood. Quiet. Small enough to not be too hard for his recovering body. He was so happy he was literally jumping up for joy.

Then he got really, REALLY tired. He asked to go back to sleep, but then remembered that he had a $1 bill in his pocket that had come in the mail yesterday and he was dying to spend it. I wanted to do some shopping anyway, so we packed up in the car and we drove to one of my favorite on-a-budget stores: Aldi.

But we didn’t find a way for Patrick to spend his money there. I had, however, noticed a Family Dollar on our drive out and knew that they bring in crazy cheap toys for Christmas. So we stopped there instead. He picked out a remote control car. (Ok ,ok. Not $1. He actually had another $10 that he’d forgotten about so I gave it to him to spend when he spotted this car.) I found a shelf of kid’s knit gloves. I’ve been looking for those EVERYWHERE! Patrick can’t help himself touching things everywhere we go. Kid’s vinyl gloves are not really accessible and also not really comfortable. But little knit gloves? We can stick those in the car and put them on when we get somewhere he might need them. And then, we can bring them home and stick them in the wash. I bought 14 pairs of knit gloves. Some are pink. Patrick insisted. And that’s ok.

When we got back, he really WAS tired. I meant to come back and just cuddle up in the room and watch TV and maybe he’d fall asleep for a bit and that would be ok. But his new car required a screwdriver to get open. And then we discovered that there was a big stack of mail for Patrick today.

Oh my gosh do we feel spoiled today! Savannah, Maria, Emily, and Clarene.. Thank you! Those packages just on time to make today feel a little more special.

And speaking of special, tonight’s dinner group brought along Santa Claus. Patrick was so excited to see him again that he ended up first in line. But then he froze and couldn’t remember what he was supposed to tell him he wanted. He also pulled one of his new favorite tricks on him and pretended he didn’t know his own name. It was a great Santa moment.

Santa brought a bag of beanie bears and Patrick picked one out with polka dots, then named her Chrissy after his favorite friend from school. (Have I mentioned that I taught Patrick about naming stuffed animals this week? He’s received 2 others this week. A stuffed dog he named Cookie. And a purple teddy bear that he’s bounced back and forth between calling Pink and Cute Bear.)

Anyway.. once Santa left, Patrick was for sure ready for bed. We came up to the room and he went and picked out his pajamas. I told him he could start changing while I got meds.. But with the hospital here preferring that we loop his line up instead of down, he accidentally tugged it and pulled his dressing off. I did my first dressing change here. It went ok. Patrick actually did a decent job helping out.. being my non-sterile hands.. a job usually reserved for another grown up. And we managed to get by with the very different dressing change kit provided by a new homecare company.

Then, we make a very quick Christmas ornament, read our nightly scriptures, practiced how to pronounce “Bethlehem”, said our prayers and laid down to sleep. Patrick was out in minutes and is fast asleep now.

So I’m wrapping up this blog post and hurrying off to the kitchen to get some more formula for the night and post what I’ve written. Then, if I’m lucky, I hope to get my husband on the phone for a bit on our anniversary.

11 years is worth some celebration! Especially 11 years married to my best friend. We’ve known each other over half our lives. Howie (or as you know him, Brian) has always been my anchor. He calms me down. He teaches me patience. He has carried me through all of my hardest times. It doesn’t matter if we are right next to each other or oceans apart, we have always been best together. But I sure am excited that there’s only one more week of this particular apart time because I miss him a lot. Especially today.

The week in pictures

So while I’ve got an internet connection, I thought I should probably share some of the pictures that have been taken since we left the hospital.

Transplant Day 42 and His First Checkup

Patrick asked me to take this picture with him and the Ronald McDonald on the wall.
Patrick asked me to take this picture with him and the Ronald McDonald on the wall.

Well, 72 hours since discharge as I’m writing this and I am amazed to say that today it seems we maybe hit our stride a little bit. Amazing, considering how out of control things still seemed last night.

Sneaking back into the room last night after blogging, I noticed the distinct smell of formula and knew that it meant that Patrick’s g-tube had come open and leaked all over him and the bed. That woke him enough that I gave in and crawled in his bed to sleep last night.

At 7, his pump alarmed, waking is both. It was an early morning, but meant we had time to get ready. It took some courage for me to figure out how to get Patrick a bath with his new ostomy without losing the pouch. Yesterday morning, I knew the pouch was about to fall off anyway so we tried it and, sure enough, I had to change the bag that afternoon. But today, we did a bath again and it was ok.

Putting Patrick in the bath helps mornings go much more smoothly than showers. It means I can leave him for a bit. For example, this morning I was able to get the bed stripped so it could be washed. Patrick is chilled so easily right now. I don’t know if htat’s because his hospital room was so hot for a month and the weather outside is so cold.. But he gets shivers all over at the slightest cold. So I’ve started wrapping him in two towels. His calls this his towel dress and it is the highlight of his morning.

Being up early this morning also meant I managed to get a shower in before the nurse came. And, amazingly, Patrick woke up feeling good enough to not need Zofran this morning. That will earn me an extra half hour of sleep every day.

I didn’t feel lost looking at Patrick’s meds this morning. I kind of know what he’s getting and when and how much prep to do in the room before taking them downstairs.  So after labs were drawn, we went downstairs and gave meds and mixed formula. (Which I remembered to make with warm water so it dissolved better.) And then I made pancakes. That felt like quite the luxury. Patrick ate 2 bites. Turns out we don’t love sugar free syrup from IHOP.

Then I glanced at my phone and noticed I’d missed a call when I was in the shower. It was the transplant clinic asking if we could come in early for Patrick’s appointment today.  So, we hurried off to run our one errand of the day, and then rushed to the transplant clinic.

I am used to doctor’s visits where the answer is “you’re doing as well as you can. Nothing can change till after transplant.” Instead, today things were moving. Patrick’s prograf levels were still high this morning, but for fear of swinging him the other direction, they are leaving his dose the same. That means that he gets to take the morning off of labwork tomorrow and have it done Saturday, instead.

Because he is tolerating feeds SO incredibly well, they are said that we can start giving him a break in his feeding schedule. We’ll increase his feed rate by 8 cc’s and he can have 2 hours off. If that goes well, then after the weekend, we’ll go up again and he’ll get 4 hours off. Because of the diproblems with his lungs, they will go very slow in transitioning him to a different formula. So he probably won’t gain much weight in the next little bit because he isn’t getting a lot of fat.. But slowly that can be reintroduced.

Alas, the formula that they often use next has milk in it, so we need to take our time going to a hyperallergenic formula instead.

And that’s that. We came home from clinic and tried to eat lunch. But Patrick was bored and sleepy, so he spent the afternoon napping and I have mostly just spent my afternoon laying here keeping him asleep… though I snuck out of bed to write this blog post.

I finally realized today that I can write the post in a word processor and then just copy and paste when I go in a room that has an internet connection. It might mean some delayed posting, but should be a little more effective than trying to get away in a room with internet long enough to write.

Follow-up added this morning after:

We were woken from nap by a phone call saying that dinner was ready. Patrick was still all over the place at dinner, but thankfully the crowd was small because he’d slept through the start of movie night at the hospital.  Dinner is very overstimulating for him. So we usually retreat to our room early.

Last night, we had good incentive. We’d picked up a Christmas tree earlier and I finally brought it into the room. We set up the Christmas tree and hung the ornament he’s made thus far on it. Then went and made two more. I cleaned out the room a little bit more. I think we may finally be almost moved in. I can’t even imagine moving houses with a kid this age.

And then, we made it to bed. Patrick’s prograf levels must still be high because he just can’t fall asleep at night. Last night, he wouldn’t stop playing with his hands. I was really grateful for the chance to visit with an older transplant patient who is staying here. He explained that the prograf makes his hands shake, hurt, and even lock. Last night, Patrick wouldn’t stop playing with his hands. So I thought to ask him if his hands were hurting. The answer was yes. And so I laid there and rubbed his hands till he settled down. Then I told him I was just too sleepy to stay up with him anymore. I went and laid down and he was asleep in 15 minutes.

We slept in till 8 this morning. No labs today. It felt luxurious. And now we’re downstairs letting him play in the playroom. Which means a little bit of internet time for me.

Yesterday gave me hope. We had some downtime and I think that will get better the more used to this new routine.