gratitude – 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.

Transplant Day 176 and Please Stop Chasing My Rainbows

Two weeks ago, my youngest brother got married. Brian and Patrick didn’t stay long, partly to protect Patrick’s immune system and partly because Patrick gets horribly bored at long wedding receptions. But I stayed behind at the reception. It was wonderful to catch up with family and friends that I only see when big events bring us together.

It was also a little strange to discover that so many of you read my blog, even though we haven’t talked in ages.

And there was something said to me by one of the women I’ve known and respected forever that’s been sitting a little funny with me that I’d like to address. She said how glad she was that we were home, especially as my blog had made it sound like we were living in “less desirable” circumstances.

This struck me funny because, although I really struggled with the loss of comforts of home at the Ronald McDonald House and the awkwardness of living in close quarters with other families day in and day out.. my memories of the Ronald McDonald House are overall very fond memories and I’m afraid I didn’t do the place and the people justice in what I wrote.

This week, a video was shared on Facebook of one of the families that we got to know while we were there who hold a very special place in my heart. They were there seeking the same miracle central line placement Patrick had needed to be listed for transplant and that mom and I bonded in a way few can over shared trauma. I don’t think to can understand how terrifying and desperate that end-of-the-road, hail mary, do or (literally) die situation really is. The video talked about how wonderful her son was doing and about how the Ronald McDonald House had helped her family. I thought it was good news and I wanted to rejoice.

The next day I learned that the video had, in fact, been shared in tribute. Instead of good news, the worst had happened. Lost central line access had put her son at the top of the transplant list. In the short time since we’d left the house, he’d received “the” call and gone for transplant. But something went wrong in surgery and he never woke up. He passed away this week.

We made a very calculated choice to stay at the Ronald McDonald House. Yes, there were financial benefits and proximity benefits. Yes, there were difficulties and uncomfortable parts, too. But we knew that being there meant the ability to share our journey with other people who’d get it.

I can’t describe the connection we have to the other families who lived long-term with us in that house. I learned how to be a transplant mom from them. We helped each other in every way we could. Cooking together. Doing each other’s laundry. Crying together. Celebrating together. They are part of my heart and having them now spread across the country facing these trials without being close to lean on each other for daily support is hard.

The truth is that doing this at home would have been much MUCH harder. During all those months away, the people who loved us back home would often say, “We wish you were here at home so we could take care of you.” It happened so often that I almost expected to have to set up a visitation schedule to slow the flow of friends and family through our front door.

But the reality is that coming home has been very lonely. Because we can’t go out, we probably see less of the people we love here at home than we ever did before. I don’t want to sound ungrateful. A lot of you have caught us in the halls at church to express your love and many of you have offered help in the way of meals or help cleaning. But it is easy to forget that left at home is a very social 6 year old. I often feel like Brian and I are his only friends. And finding the balance between taking care of my own responsibilities and making sure he has time every day where he is shown how very loved and important he is has proven to be a challenge.

Besides that, it is hard to imagine the kind of life we live unless you experience it. Everything we do has to take into consideration how and by whom Patrick will be taken care of. We don’t just go to work or to dinner or to church. We can’t just call up a friend and say “let’s get together.” We skip most extracurricular events. We don’t get to be apart for school. And when Brian travels this summer, I will be the only wife staying home.

When we DO catch you in the halls or on the street somewhere, we are having a conversation that we know is going to be very brief and so we know there is a choice between trying to take time to answer questions about Patrick and sharing our lives honestly and sincerely wanting to spend time hearing about and catching up with YOU. We don’t want every adult conversation we have to be consumed with medical updates, and so we may skim or skip over details. One friend accused me of trying to hide how I’m really struggling. I’m not trying to hide anything. I just don’t want to waste our conversation.

You won’t read as often about the things that made me cry on this blog right now. We have a different set of frustrations here at home. I don’t want to put in print the experiences where someone I love might have innocently hurt my feelings. I know that hurt feelings have much more blame in the person feeling them. I’ve learned over the years that people are trying to say things that are supportive and helpful and if I look between the lines I see and hear and feel love.

Because soil contains bacteria, gardening requires mask, gloves, and overclothes. Patrick still thinks it is worth it to help.

But there is one thing I have encountered a few times that I’d like to talk about because it is hurting and I don’t think you know.

I’d like to ask you to stop trying to find my silver linings and rainbows.

There was a marvelous sermon given in LDS General Conference a year ago. If you’re facing hard times, and let’s face it, who isn’t?, I highly recommend that you read this talk in its entirely. You’ll find it here. In it, President Dieter F. Uctdorf said:

We sometimes think that being grateful is what we do after our problems are solved, but how terribly shortsighted that is. How much of life do we miss by waiting to see the rainbow before thanking God that there is rain?

It took me a lot of years of hard trials to learn that happiness is not something that comes to us after trials have passed. Happiness comes from learning to be grateful for our blessings right now. It comes from learning to see God’s hand in our lives. Right. Now.

That doesn’t mean that if you are struggling, if you are mourning, if you are going through hard times right now that you are ungrateful, unfaithful, or unhappy.

It has been a hard couple of weeks. We took a gamble and took Patrick out a little more than usual two weeks ago and he got sick. Being sick made him frustrated and moody. It meant even more limitations for him, which made him angry. We had a week of daily appointments.. appointments we shouldn’t miss and so we gloved and masked and we still went, which only made him feel worse. In the times inbetween, Patrick expressed his anger by acting out against the only people he had to vent to, his parents. Steroid fueled kindergarten anger is hard to deal with. Add to that the sleepiness caused by antihistimines and the insomnia caused by prograf and a stuffy nose? And monitoring his oxygen saturation periodically while he slept to be sure he was still doing ok. And, well.. you can imagine.

Thankfully, his prograf levels were accidentally low when he got sick and he was able to fight off the illness without needing medical intervention. But just as he got better, Brian caught the cold. He was down for the weekend, and then I got sick, too. Remember, we all spent the winter in fairly sterile settings and so none of us has immunity against this year’s viruses. Well, on the heels of a stressful week with Patrick, my body was fairly weak. I have spent the last few days fairly sick.

And it has rained most of the week. So we have been stuck inside more than usual. And, as Patrick has felt better, his body’s sensory system has been craving movement, so this was not a good week for that.

If you asked me this week how Patrick is doing, I probably would have told you about those things. Because that is what has happened this week and it helps me to talk about my struggles.

That’s the rain in our lives right now. And friends are there to talk about the rainy times, too, right?

However, right now when someone asks me how Patrick is and I mention that we’ve been stir crazy, missing school, easily sick, wondering why we are struggling to hard to set up playdates, lonely, etc., I can almost predict the response. The person I’m talking to will ask me how much longer things will be this way. They’ll point out that Patrick’s almost 6 months post transplant and wonder when his medications will change and his medical team will allow him back in public. They’ll try to show me the end in sight.

I know you mean this well. You don’t like to see us struggling and you hope that relief is coming soon. You want to point out that there’s a rainbow just around the corner or a silver lining in the clouds.

But right now, that isn’t what I need. I need someone to walk with me in the rain. I need you to help remember how much I love my raincoat and umbrella. I need us to look together at how rain makes the earth clean and helps the flowers grow.

In other words, I need you to listen to me about my struggles and maybe try to help me figure out how to get through what needs done this day and this week. And maybe to listen about the good things too.

Because a lot of good things happened in the past 2 weeks. We got set up with Primary Children’s liver transplant team so that now, we have a transplant coordinator who checks Patrick’s labwork and calls me to see how he’s doing and I don’t have to bug his very devoted doctor with every little question and play intermediary with the transplant team in Nebraska.

We also saw Patrick’s rehabilitationist and neurologist this week. They both assured me that, while Patrick’s cerebral palsy and other symptoms of his brain injury aren’t gone, it hasn’t been made worse by all he’s gone through lately. He doesn’t want to wear a brace right now and getting to physical therapy would be difficult. And they both assured me that, given all we have gone through recently, it’s ok for that to be on the back burner right now. They’ll keep watching for trouble. Someday we’ll get back to working on strengthening and stretching and improving his gait so he can run and climb. But for now, I shouldn’t feel guilty for not doing more about it.

Also this week, Patrick and I went to a teacher supply store and bought some math manipulatives. We managed to hold 1-2 hour study sessions every day without major tantrums. Patrick counted and added the new pattern blocks without getting upset with himself or me. And his teacher was really impressed when she came by the progress Patrick has made in reading, writing, and math.

I taught Patrick to ride his scooter. We laid in the grass and watched the clouds.

But I might not get to telling you about those good things that happened right now if you ask me about Patrick’s current struggles, and I answer honestly, and then we spend our brief conversation time talking about what things might be like when the rain stops. I promise, I may be wet and soggy and tired.. but I don’t so much mind the rain. And let’s face it, we’ve got a pretty rainy forecast ahead of us.

Our trials don’t mean that we need all of our responsibilities taken away. Yes, it may take more coordination for me to participate now than it was before I was a mother. But it is also healing to do normal things. I got to go to a youth activity and teach teenagers how to do data entry on vital records used for geneology this week. I had to get a babysitter, make special arrangements for dinner, and work around Patrick’s school schedule. But it felt good to be out among people and sharing my talents. It is nice to be included. I’d like to see you. I might have to suggest a less crowded venue for an outing or we might have our conversation interrupted two dozen times by my 6 year old. My life is messy right now. But I’d like to share it with my friends.

You might even learn something I haven’t posted in this blog. There is a lot I don’t write about.

Good things are on the horizon. Patrick’s 6 months transplant anniversary is coming up this week. A lot of things will hopefully change for the good. We are talking about when and how to go back to school and church. We also know that it isn’t going to be easy for Patrick, who has always struggled with routine and crowds and sitting still, to come back to them after such a long break. So we’ll need to take it slow and it might not seem to go well for a while.

I know that chronic disability is hard to wrap your mind around. Everyone likes happy endings. We like resolution. We pray for and believe in miracles. We don’t like people we love to struggle with hard things for years and decades and lifetimes. And I know that when you think of transplant you think of it as healing, a cure, and end to struggling. And so watching this be a long recovery and lifelong challenge goes against all of that. God promised joy in this life. But He didn’t promise us a life free of sorrow. Quite the opposite, in fact. He promised to refine us, and refining takes fire.

But I promise, it’s ok. We are ok with it. We can be happy in the rain. But rain is best when you’ve got someone to splash in the puddles and share an umbrella with us. I promise, I’ll listen about your storms, too.

I told my friend that there were hard things at the Ronald McDonald House that I sometimes miss it. I miss being surrounded by people who were all facing the same struggles and so able to mourn together. I miss those friends who made the best of hard times with me.

But I think I miss it most because I didn’t feel like I needed to sugar-coat my trials. Because often it isn’t until I say things out loud and see the look of pity on someone’s face that I even realize that it might be pitiable.

President Uchtdorf again:

We can choose to be grateful, no matter what.

This type of gratitude transcends whatever is happening around us. It surpasses disappointment, discouragement, and despair. It blooms just as beautifully in the icy landscape of winter as it does in the pleasant warmth of summer.

When we are grateful to God in our circumstances, we can experience gentle peace in the midst of tribulation. In grief, we can still lift up our hearts in praise. In pain, we can glory in Christ’s Atonement. In the cold of bitter sorrow, we can experience the closeness and warmth of heaven’s embrace.

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My friend who lost her son this week is raising funds to help cover his funeral expenses. His fundraising page can be found at: http://www.youcaring.com/memorial-fundraiser/jalen-boyce-s-medical-memorial-fund/342215#.VTg_itc1flc.facebook

Christmas in Patrick’s House

Well, despite the fact that Patrick spent most of the week before doing forbidden things and saying “naughty, naughty, naughty,” Santa still came to Patrick’s house.

I was very excited to share Christmas with a little boy finally old enough to understand. In fact, I was wide awake at 5 a.m. after having a horrible dream about needing to collect a sample to test for C-Diff… and could barely get back to sleep because I knew it was Christmas!

Patrick, on the other hand, slept until 9. Brian and I actually got up and started making breakfast before the little munchkin dragged himself out of bed. Who was I to argue with him sleeping in on a day when naps would be near impossible?

He loved opening presents, though wasn’t so keen on the fact that mom and dad kept taking the new toy away to give him another present to open.

Still, it was quite the Christmas complete with lots of Elmo, cars, new clothes, books, and a stocking with goodies of bottled water and puffs.

Then, we finished breakfast. I found that I could make decent eggless milkless pancakes from a mix, so we made some silver dollar sized pancakes for Patrick and some big, fluffy, pecan laden pancakes for mom and dad.

We ate and then, still in PJ’s went to take presents grandma and grandpa. The rest of the day we visited family. We had a big family get-together with my family at my grandpa’s house. The place was so packed with cousins and gifts that you could barely walk!

We spent the evening with Brian’s family. His brothers drove in from out of state and for the first time in years, the whole family was together on Christmas day.

At last, exhausted, we headed home to bed. Christmas was everything I could have dreamed!

As I reflect back on this Christmas season, I realize just how blessed we have been this year. In the midst of all the hustle and bustle, the presents and family and good food… I’ve had a few little moments where I realize that we have been given the greatest possible gift this year. Our little boy was able to share in all of the Christmas magic with us.

This year, Brian’s company party took us to the theater for a production of A Christmas Carol. You know, I think I’ve seen or read that story at least a hundred time in many, many formats. I’ll admit, the character Tiny Tim has always seemed a bit romanticized to me.. how could a little boy really make THAT big of a difference?

This year, it took a conscious effort to hold back the tears. Having Patrick in my life has taught me just how a very special child can really touch hearts and lives. I understand why Bob Cratchit would stay working for that awful Scrooge. And what’s more, I understand why Christmas in their house was so very special.

Dickens described Christmas in the Cratchit household with these words:

“There was nothing of high mark in this. They were not a handsome family; they were not well dressed; their shoes were far from being water-proof; their clothes were scanty; . . . But, they were happy, grateful, pleased with one another, and contented with the time; and when they faded, and looked happier yet in the bright sprinklings of the Spirit’s torch at parting, Scrooge had his eye upon them, and especially on Tiny Tim, until the last.”

Happy, grateful, please with one another, and contented with the time. That is how I’d describe our Christmas this year. With our own Tiny Tim, each seems a little more precious.

Yes. We had a very merry Christmas in our house.

Thanksgiving

What’s the best thing about Thanksgiving dinner? Not the food, according to Patrick, who really didn’t even want to eat much of anything at either of the family get-togethers we went to. For Patrick, the best part of Thanksgiving dinner was that it put his family all together between the hours of 2 & 4 p.m. This is when Patrick has his break from his TPN, which means that on two consecutive days, Patrick got to run around tube free and play with his very favorite people.

You couldn’t ask for a better holiday treat.

I’ll admit, I enjoyed it, too. It’s different to go to an event and be able to let Patrick play without having to follow behind him watching his tubes.

And the best thing about the entire holiday weekend? Well, according to Patrick, it was having Daddy home for so many days in a row. He didn’t want to let him out of his sight. Friday morning we went to do a little bit of Christmas shopping and when Brian walked away from the cart, Patrick was absolutely heartbroken.

Daddy is, hands down, Patrick’s favorite person in the entire world. And who am I to argue? The two of them are my two favorite people, too.

Spending the holiday with the two of them, free from the hospital, healthy and happy is truely something to be thankful for.

Attempting a vacation… Line by line

Since Patrick came into our family, we’ve made several attempts at a vacation… and all in vain. For a while, I superstitiously didn’t even want to say the word, for fear that it would end up with another infection. It seemed that the bigger the plans, the bigger the catastrophe.

But.. several months ago, when Brian’s parents suggested a trip to Yellowstone with his family, we couldn’t resist the chance to make another attempt. We booked a room, cleaned our house, packed our bags. With each step closer, I just kept waiting for the hammer to drop.

On the 5th, Patrick’s line sprung a pinhole sized leak. It wasn’t even visible.. but the line pulled air when I tried to draw back and sprayed when we flushed it. So we ran up to the hospital to have it repaired. All went smoothly, especially for 5 p.m. on a holiday. We even made it to a family dinner, just a little late.

Patrick with line newly repaired modeling some of the sterile gear required.

The next day, just after I connected the TPN to the repaired side of the tubing, Patrick stepped on the tubing. The glue used to repair a central line takes 3 days to fully cure, and the tug from stepping on it was just enough to undo the repair. It set back my packing several hours, but we ran up to the hospital and got the repair done. We were still going to make it, darn it!

I stayed up late packing, then the next morning got up at 7 to drive Brian to work. All day long, I worked to get ready and was stunned to find myself actually loading up the car.

Patrick had an appointment with his GI in the afternoon. The plan was we’d go to the appointment, then pick Brian up from his office, and head north to Yellowstone. I was grinning ear to ear as I left the appointment, knowing we were on the road at last. I was so anxious to go that I even did Patrick’s TPN tubing change in the back seat as Brian drove so we’d get out of town before rush hour.

An hour and a half north of Salt Lake we stopped at a rest stop outside of Malad. Patrick needed a diaper change. As I was taking him out of his carseat, his tubing caught on the buckles. The repair came apart, again.

We had to decide what to do next. It was an hour and a half back to Primary Children’s. Or, it was a little more than that to the hospital in Idaho Falls. I’m not sure what possessed us, but we decided we didn’t want to turn back. We’d gone to great lengths to get a spare repair kit to bring with us, just in case. Surely the repair could be done at another hospital.

So, we made the quick but nervous drive to the hospital, arriving around 8 p.m. Eastern Idaho Regional Medical Center is one of the best hospitals in Idaho. But it is an adult hospital. Which meant an adult waiting room with scary things like chest pains and seizures, broken bones and more. They were kind and willing to help, but got slammed with these difficult cases all at once, so they asked if we’d mind waiting in the waiting room.

Around 10, they finally invited us back to a room. The doctor came in and we tried to explain what was wrong. He seemed a bit stumped about what we were trying to explain about one lumen of a double lumen line being broken. Finally, Brian spoke up and said, “We have a repair kit and know how to do the repair, but we need some supplies and a sterile environment.. and maybe some help.” The doctor agreed to let us do the repair.

The nurses did their best to gather up the extra supplies that we needed. they were a bit different than what I’d seen used, but I knew how to use them. They also offered a nurse to be my assistant as we worked.

The process of repairing a broken line is a simple one, but must be done just right. First, the people doing the work puts on full sterile gear, including mask, gown, and cap. The line is clamped off so it won’t bleed. Then, the line is sterilized. Using sterile scissors, the broken part of the line is cut off. This cut must be perfectly straight. The repair piece is then connected. It has a tiny metal tube inside you slide into the remaining original line. You test to make sure it flushes and draws without leaking, glue the two pieces together, cover the repair with a protective plastic sleeve, then fill that sleeve with a sterile glue to seal the work. It’s delicate, sterile work.. but not really complicated.

Or so I thought.

It was so strange to be gowning up to do this. I was nervous, but pretty confident. I’d seen this done at least a dozen times.. and twice already this week.

Once I started, though, I got scared. Because the line had been repaired (and trimmed) twice in the week already, it was too short to repair just one side. A double lumen line is made of two tubes encased in one that branch out a couple of inches past the insertion point. I had to cut the line where the two tubes were still one.. meaning we had to shut off the TPN for at least 4 hours from when I finished the repair. That added some pressure.

Repairing this section is harder, too, as there are two little metal tubes to fit into the two sides of the double lumen tube. The work was more delicate and the fit was more essential.

As I worked, I felt like a bumbling idiot. I was guiding the repair. The nurse assisting me had never worked on a line repair before, so she had to follow my instructions. Brian was talking me through it, but had to work to keep Patrick restrained. My first cut was a little crooked and leaked when flushed. The second cut fit. I slid the sleeve on and tried to fill it with glue, only to discover that the glue was slippery! I’d seen nurses struggle with this before, but never imagined that that was the problem. I’d insert the needle into the sleeve to fill it with glue and it would slip out of place. I probably spent 10 minutes or more trying to put the glue in.

Finally, it was done. We tested it, dressed it, taped it down as securly as possible, filled the line with heparin so it wouldn’t clot… And the reality sunk in.

My repair seemed really sloppy and if I’d screwed up, we were hundreds of miles from home or anywhere that knew how to fix my mistake. And Patrick’s TPN was shut off… couldn’t be restored until the line was fixed and the glue dried for at least 4 hours!

I kept my calmest face on as they did a quick discharge… then went to the car, buckled Patrick in, gave him a lollipop to keep his blood sugar up.. then sat down and cried as the impact of what I’d just done sank in.

We drove to Rexburg, arriving around midnight. Brian checked us in and we moved the luggage. Patrick loved the hotel room… a suite, so we’d have a fridge for the TPN. He stayed up playing till about 1, when I finally succeeded in singing him to sleep. Then I said some very urgent prayers for help that my feeble attempt would be good enough, and that I would regain a sense of peace and confidence. Then I fell asleep, too.

I dreamed all night of broken lines and taking lifeflight to Utah because I’d made a mistake. At 2:30 it was supposed to be safe to use the line again. I got up flushed it slowly… no leaks. Then I started the TPN. I sat up for the next half hour and checked again.. still no leaks.

In the morning, we all slept in.. exhausted. I’ve never been so grateful for room darkening curtains in my life! Patrick had slept soundly… no whimpering like he does when TPN isn’t running. I pretty well expected to find him soaked in leaked TPN when I got him up, but the dressing was still dry.

The repair held well and is still holding.

We ate breakfast, packed our bags, and got on the road again. I can’t describe the feeling of relief and joy as I watched a very happy, healthy Patrick walking along behind the luggage cart on the way out of the hotel.

We arrived in West Yellowstone early that afternoon. We’d made it!

I’m afraid the stories from the rest of our trip will have to wait for me to write them down in the morning. Needless to say, it was a wonderful week! I am so grateful to a Heavenly Father who understands the importance of small things like finally taking a family vacation and hears and answers prayers to the effect… who helps and guides and sends the Comforter when needed… Who helps to qualify a sometimes awkward, impulsive and anxious mother, with the help of a calm and constant father, to do unimaginable but necessary things – all for the good of her family and child.

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An evening to remember

It’s been two weeks since Patrick’s Hope Concert and I haven’t blogged about it yet because, well, how do you even try to capture something like that? It was something we’ll never EVER forget!

Friends, families and even strangers came together in amazing ways.

Brian met the sound crew and musicians at 1:00 p.m. I think he had a great time tagging along during sound checks.

Meanwhile, our wonderful friends and family worked to set up the silent auction.

It was after 5 when I got Patrick’s afternoon medical care taken care of and got back to the school where the concert was being held. What I found was amazing! All the auction donations displayed on tables looked so different than they have sitting in my basement. The community was so generous! There was far more there than I’d realized had been given.

The auditorium seemed to have been transformed. When we toured the school months ago it had seemed like a shabby school auditorium. Now, with instruments on the stage and Patrick’s image filling the wall, it looked like a concert hall.

Before long, volunteers and guests started arriving. Soon the lobby was shoulder to shoulder with people we love. Our adoption caseworker was there. So were some of Patrick’s favorite nurses. Co-workers. Friends from church. Family. His doctor. I wish there had been more time so we could have visited with all of you.

We decided to watch the concert from the balcony. (It wasn’t officially open). We wanted Patrick to have lots of room.. and to watch the concert where it wouldn’t matter if the applause scared him or if he was too sleepy. This was a good thing because his only nap was 11 a.m. and the concert started just half an hour before bedtime.

We owe a huge thank you to Paul Cardall for all he did to put together an amazing concert! He had me crying from the start. The other musicians deserve a thank you, too.. For giving their time, talent, and even equipment to make the night work. So thank you Charley, Sam, Mindy, Steven, Marshall, Kevin.. and to the other musicians who I may not have met but who came and shared their time and talents.

It was so fun to see everyone in Patrick’s “Got Guts?” t-shirts! Just one more thing that made us realize that this night really was for our family!

A big thanks is also owed to Seth Mitchell who worked miracles in getting us a concert quality sound system, donated no less, and a crew of very talented engineers who mixed sound, ran lighting, and otherwise put together the look and feel of the concert. We couldn’t have done it without you!

While I’m expressing thanks..Thank you to my mom who put so much time and effort into pulling this event off! Neither one of us knew what we were doing, but you certainly stepped up and figured it out. Thanks to the rest of our friends and family. Dad, Dick, Phyllis, Jill, Cindy, Michelle, Jay and friends Kirstie and Tifanie who came to meeting after meeting and worked to pull everything together. Thanks to the many friends and family members who came to staff the event. Thanks for keeping me sane!

Thanks to the businesses and individuals who gave to the silent auction. I was touched with each donation that would show up. I wish there was space to put all the stories here.. as almost every item has a story behind it.

And finally.. thanks to all of you who came to share the evening with us! In that big auditorium, we looked few in number.. but there were several hundred of you there. The event definitely made a difference! We more than doubled the donations received thus far. I don’t dare publish a number, because my doorbell still is ringing with people giving more.

Beyond helping with Patrick’s transplant fund, though… You helped us a lot by heart, too! Knowing that there are so many of you who would give up a Saturday evening to come and celebrate Patrick’s life with us was means so much!

This has been a tremendous journey with Patrick. Each day with him is a miracle. I feel as though he’s outlived his expiration date time and again. It was wonderful to be able to take a night and celebrate that miracle with the people who mean the most to us.

Mother’s Day

Patrick is feeling much, much better now. The infection has been well treated with the medicines he’s getting. He’s stable, happy, and playing. Doesn’t need monitors. Doesn’t need much attention at all, except giving his medications on time. There’s only one thing keeping us here. . .

Because this is the 2nd time in a very short time that Patrick’s had a yeast infection, they wanted to make good and sure that the bug is dead before they put a new line back in. Right now, Patrick has a good “deep line” in his leg. This means that it is in deep enough that they can draw labwork out of it and give better nutrition through it. However, it doesn’t go all the way to his heart, which means that it’s not as likely to get infected – but it’s also not really the safest for taking him home with. He’ll get a new central line on Tuesday and go home as soon as possible afterwards.

So, we spent Mother’s day in the hospital. It was a good day, though very quiet. We got to visit with both Brian’s mother and mine today. Patrick got to get all dressed up and go to church. (Best dressed patient in the hospital today, I’d bet.)

Being here has been a good opportunity for me to reflect on how grateful I am for the many different types of mothers who play a part in our lives. Mothering Patrick is not the kind of job I could do all by myself.

I’m grateful for a mother and mother-in-law who’ve been willing to step up and step in to learn how to provide Patrick’s medical care so that Brian and I can get the occasional night out or so that when I’m exhausted and at my wits end I have somewhere to turn. You may not know what a rare priviledge that is that you have given to us.

We are grateful for our mothers. You prepared us to be Patrick’s parents and you help us each day to do it. I don’t think it’s possible to count the number of prayers, meals, phone calls, visits, crazy projects, and more that you have offered for our little family.

I’m grateful for sisters and a sister-in-law who are also there to help lighten my load when I need it, to fill the fun aunt roles. They are helping to raise some spectacular children, Patrick’s cousins, and him as well.

I’m grateful this week for nurses and CNA’s who have taught me how to do this job, who’ve sat rocking Patrick in the dark so I can catch a few hours’ sleep, who listen when I need to cry or share in small, although sometimes icky, triumphs and who make my day every time we see them because of how much they love my child.

I’m grateful for Patrick’s birthmother. I have no doubt that she loves and is proud of Patrick. I am impressed by her strength. I’m grateful to his birth grandmothers who trusted in their children and loved Patrick. It’s not easy to support a son or daughter considering adoption when you know it means a grandchild will be far away. We are grateful for the love and trust and support they’ve shown in us. We also owe thanks to Patrick’s aunts who helped offer comfort when needed and still are lovingly watching over him. What a blessing it is that he was born into a family who loved him so much.

This mother’s day, thank you to all of you mothers who are there for us. You come in all shapes and sizes.. friends, neighbors, family, and more. I couldn’t do this without you.

Adoption Reflections: The best gift

Today is my birthday. Brian’s been asking me for weeks what I want for my birthday. The problem is, last year I got one of the best birthday gifts that I could have ever wished for. And this year… well, I can’t think of much more I’d wish for.

Last year my birthday was a pretty quiet event. My mom had flown home to Utah after a great week together. (She was good enough to blog about this.) I’d picked Brian up at the airport the day before. Patrick was recovering from surgery and was pretty out of it.

My mom had told a few of our favorite nurses that it was going to be my birthday.. so I was greeted with birthday wishes when we arrived at the hospital in the morning. Patrick was just waking up. For a kid who’d just had surgery, he looked great!

But that wasn’t the biggest event of the day. See, in Michigan, the birth parents have to go to court to relinquish custody. We’d been told that this process could take weeks, if not months. Until then, although we had rights, so did the birthparents – and in a hospital situation, with privacy laws and medical consent to worry about, the result was some awkward situations for us as adoptive parents.

The lawyer at the adoption agency had made some heroic efforts and gotten a court date just over a week from the time we signed our adoption paperwork. That morning, Patrick’s birth mom and dad went to court.

We met them for lunch shortly afterwards. I’ll never forget the image of Patrick’s birthfather comforting his birthmother as we walked into the restaurant. We had a nice lunch and got to know each other a bit better. This was the first chance we’d had to meet Patrick’s birth father. I tried to remember it all so I could tell Patrick about them someday.

Then we went back to the hospital. One of the best parts of time in the NICU with Patrick was naptime. He was in a very nice room with a comfy recliner. We could sit for hours in that chair with him snuggled up. With this sweet little ball of baby on my chest, the lights dimmed, and music playing in the background, it was impossible not to fall asleep sometimes. We called them “Patrick naps”. They were the highlight of my day. So after lunch, Brian and I each took a turn with a Patrick nap.

That night, we splurged a bit and went out to Benihana for dinner. My birthday cake was this funny little ice cream roll with a pink paper umbrella stuck in it.

This birthday didn’t have wrapping paper or candles. No one sang “Happy Birthday”. I didn’t have a party until weeks later. I didn’t get any cards. I didn’t even see most of my friends or family.

I didn’t open any gifts on my birthday. But I did get the best gift of all. Patrick was officially ours. I was officially a mom.. and best of all, it happened on the day I’d set as my arbitrary deadline. I didn’t want to turn 29 without being a mom.

Patrick’s life has been one of the best gifts I’ve ever received. He has healed sorrows I didn’t think could be healed. He has taught me patience and courage and love.

So please forgive me if this year I’m not very worried about present or parties or cakes. This morning Patrick grabbed my hair and pulled my face down to his and give me a big wet sloppy kiss right on the mouth. That is gift enough.