Tag Archives: trials and triumphs

Transplant Day 804 and Look Ma. No lines!

**Composed yesterday in the surgery waiting room**

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

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

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

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

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

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

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

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

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

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

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

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


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

February means…

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

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

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

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

Well… had been healthy.

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

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

I was super proud of him.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy February.

 

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

Whom the Lord Calls

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

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

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

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

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

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

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

Patrick on His sealing day.

Patrick on His sealing day.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And whom the Lord calls….

From November to February

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Transplant day 215 and the School Placement Meeting

I find I procrastinate blogging when I am having a hard time processing something emotionally. I’m finding this subject hard to write about. This past week hard to write about. And I was kind of relieved by a brief outage in the blog that made it so I couldn’t write. But if I don’t get this down soon, then I won’t get past it to the things you want to know about. So here goes.

I’m behind in blogging and, given how much has happened, have decided to do some belated day-by-day catch-up. So in this post, you’ll be travelling back with me to June 3. The day of Patrick’s school transition meeting.

Actually, let’s back up to the day before it. On June 2, I took Patrick for his end-of-year kindergarten assessment. We got delayed leaving because it was also lab day and so we arrived with breakfast still in hand because we’d just made it. That’s ok. Patrick tests better when he’s eating.

I sat in the corner and read scriptures on my phone and half-listened. I actually feel like the test was pretty representative and that he did pretty well. It also pointed out to me how much he still struggles. He aced letters and letter sounds, starting sounds of words, and read a few sight words. When asked to write words, well, first he is only identifying parts of words. Second, writing is one of those things that his brain injury makes hard. His teacher pushed him to write starting sounds, which I was pleased with. And he showed her that he still knows pretty well. He struggled a bit with sounding out words, too. His speech delays get in the way there sometimes. But I thought he did pretty well, for him. He counted to 26, though he almost forgot 16. He counted 20 objects. And then he avoided the other math questions.

It felt like a pretty good representation of his abilities as I listened. And when it was done, his teacher kind of talked through the results with me. As expected, he’s better with literacy than math and writing is a big obstacle. She told me that she was worried that he was not going to do well in a writing-focused first grade classroom and I started to fear that I might need to think differently about what I was going to ask for in the placement meeting the next day.

Like I wrote before, the week before the nurse had given me a heads up that Patrick no longer qualifies for medical hub services and so he’d need a special exception to attend Whittier. That was my preference, though I wondered if there might be other better options I didn’t know about. I knew I didn’t think he wouldn’t do well in a typical first grade classroom in a school without support.  He is so far behind the rest of the kids in his kindergarten class after this year.

So, Wednesday morning rolled around. We were combining getting ready for our trip to Nebraska that evening with getting ready for this meeting. Brian tried to sneak in a work call and it seemed that we were going to be quite late. How we managed to find time to still go pick up Dunkin’ Donuts I don’t know. But I do know that I was on the brink of a panic attack when I’d imagined doing that and then didn’t think we could. I’m not so good with change.

Anyway, we dropped Patrick with my mom and then met with the team. At first, we went over Patrick’s current abilities. Strengths and weaknesses. Learning style. Kind of went around the table and his teachers and therapists talked about what he’d accomplished in the past month and where he still needs to go.

And then it was time to let the district representative go over placement options. She offered 3: 1) Repeating kindergarten, 2) A regular first-grade classroom with an aide, and 3) a self-contained classroom called a functional academic classroom.

We’ve talked about repeating kindergarten for quite some time now. When we got home from Nebraska, it seemed inevitable. But Patrick has made a lot of progress and he’s already one of the oldest in his class and this just didn’t seem like the right choice for him.

Then the principal explained why she didn’t think a regular classroom with an aide was a good placement choice. (Please note: the principal at Whittier is one of the kindest, most concerned administrators I’ve ever met. So when she shared this, it was full of empathy and a sincere thought in Patrick’s best interest.) She expressed concern that Patrick would get frustrated with being so far behind his peers. That he’d need a lot of pull-out time. And that having an aide hovering would feel limiting and restrictive to him. Patrick’s teacher had pointed out to me that he often stopped and tried to get her to give him answers or help in his test because he is so used to it.

Then they told us about the functional academic classroom. How it provided a smaller class size and lots more adult support so they can accommodate different learning styles. How the school is closer to our home. How it used to be a medical hub, too, so the environment there is accepting and inclusive. How amazing the teacher is. How they have often sent students there to see them thrive. How some of the IEP team also works there so we would have some familiar faces willing to advocate for him.

We also talked about placement at the school by our house. They gave me lots of pros to that, as well, but I knew it wasn’t right. That he’s not ready for that.

I knew as they talked about the other classroom that they were describing what will probably be the best place for him to learn. They reassured me that being pulled out in a self-contained classroom doesn’t have to be a long-term thing. That he might only need a couple of years to make up for what he’s missed.

But then, I started to imagine Patrick and the little friends in his classroom who have loved him so sincerely. How their faces light up when they see him. How they hold hands on the playground. And I started to cry. I HATE that I cry. But, as much as I know that academically this classroom will help him, I don’t want to see him lose that acceptance and friendship. And it is a total leap of faith. (One I am having a hard time making.) to believe that starting all over again in a new school isn’t going to set him back socially. Especially if he isn’t in a regular classroom. All the inclusive activities in the world aren’t the same as being in the same class.

And besides – it means giving up the amazing people at the school Patrick’s been attending. The familiar faces. The rockstar IEP team. The sensory room and PT gym. And my little oasis next door where I’ve been walking and studying and praying while he’s in school.

So – the meeting ran a bit longer because once I had tears on my face, they were trying to comfort and reassure me. Which made me feel stupid because I know my reaction is emotional. The logical part of my brain knows what’s best here. I’m already thinking of that as his new school. But I’ve got to find a way to make sure that all the i’s are dotted and the t’s crossed to send him there. And make sure that my fears don’t rub off on him.

And once the meeting was over, we sent Brian off to a meeting at work and I went and finished packing for Nebraska. And I was completely distracted all afternoon.  And we were up till 2 a.m. for reasons I’ll describe in the next post.

And I’ve stalled writing this blog post because I still feel conflicted and unresolved. And a bit guilty that I didn’t pull off more of a miracle keeping him up with his class. But here it is. And I’m gonna post this and start another right away.

 

This week’s normal

I think for the next little while, we’ll be building our normal week by week. Some things are routine. A lot is just made up. Most of the time, it feels like we’re flying by the seat of our pants, but every once in a while, we strike gold and I know that I got being a mom right that day. I wish more days were like that.

Patrick’s doing well back at school. Waiting to go in the morning is really hard. He gets up excited to go to school and then we try to fill the mornings. When we have our act together, we will do something before we leave. Work on homework. Visit the library. I’ve learned it helps to go early enough to let him get some wiggles out before school so we usually try to get 15 minutes to half an hour at the park that’s next to the school.

Where I spend the mornings when Patrick is in school

Where I spend the mornings when Patrick is in school

I’m enjoying a brief little bit of respite while Patrick is at school. One of this teachers pointed out a quiet little walking track near the school. So I drop Patrick off and then go walking. You know that mom who stays in her exercise clothes all day long? Shops in yoga pants? Picks up her kid with a messy ponytail and no makeup? Unshowered. Long into the afternoon? Yeah.. I’m that mom right now. But it is SO NICE to be able to exercise and this is the way I am doing it.

After walking, I’ll sit down in the far corner of this beautiful little grassy, shady park where i walk and read my scriptures. I love that the ladybugs are my study buddies.

An hour goes pretty quickly. But it is very nice to have this little bit of time for quiet reflection. Especially because, as happy as it makes him, going back to school has been hard for Patrick.

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I was thinking that somehow transplant had magically relieved him of his sensory processing disorder. No. It turns out that it was just being able to be home and unstructured. Keeping it together enough to follow the rules and sit still and be attentive at school takes enough of Patrick’s energy that, even though it’s only one hour, when I pick him up he is wound up like you wouldn’t believe. It takes a good hour for him to settle down again.

His temper is hot again – fueled by steroids that I’d hoped might not be necessary in this high of doses by now. And we spend a lot more time trying to cool down when angry.

The days that are golden we manage to fit in something magical like an hour of practicing reading early reader books at the library or sitting down together to practice writing or have lunch at the park. Patrick’s quickly taking to the idea of kids meals and is trying just about any sandwich I deliver packaged in that form. He devoured an Arby’s roast beef sandwich, though at home he has sworn up and down to me that sliced roast beef is “too brown.”

At least once a week, we try to stay late after school at the park. One or more of the kids from class will stay after school to play. His classmates really do love him and try to include him. I heard one boy tell a friend, “I can’t leave Patrick to play with you. He has been away and is lonely. You can play with us. But I want to play with Patrick.” Big words and big heart from a kindergartener.

My mother's day flowers

My mother’s day flowers

We have enjoyed a brief break from the rain and that’s had us spending afternoons outside. I asked Brian for flowers for the garden for mother’s day. He spoiled me by taking me to the greenhouse and letting me pick out flowers to my heart’s desire. So I’ve been planting all week. Patrick still struggles with this because he’s not supposed to garden in this first year and feels left out of an activity he loved. So we try to do it in small portions.

However, it did get him outside and, though he protested a lot the first day, after that he started asking me if I’d go plant flowers so he could play in the yard.

Speaking of Mother’s day.. I had such a peaceful day. Weekend, actually. Brian spoiled me all weekend, taking me out for breakfast and dinner at favorite restaurants on Saturday, and then cooking for me on Sunday. We opted to stay home, which made for a quiet and peaceful day.

I was invited to speak in church that day. That’s a nervewracking assignment for a woman who has a history of infertility and adoption and raising a child with chronic, terminal illness. Womanhood and motherhood have NOT gone the way I expected and I used to cry through and try to avoid church on mother’s day.

However, spending my walking time in the week before mother’s day studying messages about womanhood and motherhood and God’s love really can help to build up your sense of self-worth. After all that we have been through this past year, I’ve wiped away most of my expectations. Without expectations, it is hard to be disappointed. Instead, I spent most of the day just feeling grateful. Grateful for the lessons I’ve learned. Grateful for another year with Patrick. Grateful for relative peace.

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I needed that little recharge. Because not every day is full of peace and gratitude. Not every day do I get motherhood golden. I’m still learning to juggle time and responsibility, fostering independence and giving loving attention.

The end of this week ended up tricky. Wednesday night, late, I got a message from Patrick’s teacher saying a stomach bug was working its way through the classroom. Brian and I talked about it and decided to give Patrick a choice of whether he wanted to wear a mask and gloves and go to class or check out early with me.

The first day, he opted to check out early. We had a golden mommy day that day where I made up for missed school time by working with him on reading.

The next day, he chose to wear his mask. That day didn’t go as smoothly. He came home riled up and didn’t want to nap and decided to avoid it by being extra naughty so I’d need to stop him and/or put him in time out. A rainstorm came in that night and I can’t help but wonder if the change in barometer hurts him and he just doesn’t know how to express it. I mean, I ache from tiny little injuries. He had his whole digestive system removed and replaced.

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And so we go. Day by day. Week by week. Making this up as we go along.

I told a friend on Sunday that it feels somewhat as if my life was erased when Patrick got his transplant. We’re trying to piece it back together a little at a time. I’m trying to get the most important things back in first. There is a sort of peace in that simplicity. Some days I get the parts in wrong and the gears get jammed. Other days, they fit and we work like a well-oiled machine. Most days, a little of both happens.

Hope you’ve enjoyed pictures from one of our well-oiled days. We surprised Patrick with a trip to member’s night at the zoo. He’s been asking since Brian and I went on our last date if we’d take him on a playdate, too. When we pulled into the zoo parking lot, his face lit up. Bonus that the summer dinosaur display was already up.

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Transplant Day 176 and Please Stop Chasing My Rainbows

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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.

Patrick and Ronald last December

Patrick and Ronald last December

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.

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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.

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.

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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.

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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

Transplant day 125 and something is brewing

I’ve been saying for days that I needed to blog. But it’s been a doozy of a start to a week. I’ll take my pictures from last week, which was much funner, and tell those stories in the captions.

A week ago Wednesday, we snuck away to a hockey game. We gave up our usual center ice seats and instead snuck into the upper level where tickets aren't sold. This means we had the section mostly to ourselves.. much safer.

A week ago Wednesday, we snuck away to a hockey game. We gave up our usual center ice seats and instead snuck into the upper level where tickets aren’t sold. This means we had the section mostly to ourselves.. much safer.

Sunday, Brian made a comment to me as I got home from church about how many diapers he had changed for Patrick while I was gone. I thought, “Oh, we’ve had a lot of that lately” and didn’t really listen. It was a busy day. I’d been at church for 3 hours and we had decided to stay home that day and invite some friends over for dinner last minute. So while Brian was turning out a roast and roasted potatoes, I was throwing some bread in the breadmaker and trying to get Patrick to nap. And, well, I didn’t think of it again.

Until the next morning when Patrick’s nurse checked his temperature while I ran upstairs to grab some supplies to draw labs. I came downstairs to him telling me, “He doesn’t have a fever, but his temperature is a bit high. You might keep an eye on that.”

But Patrick wasn’t complaining. He just needed a lot of diapers changed. And we’d just changed his formula to be a little more concentrated so it would run over less time and I thought that was all that was up.

When it was naptime, though, I checked Patrick’s temperature. To do this, we always check ours first to be sure the timpanic (ear) thermometer is working. And, well, Patrick’s temperature was still 99.6. But mine was 100.4.

All through naptime, Patrick’s and my bellies gurgled and talked to each other. By evening, I was feeling pretty darn sick. Apparently stomach bugs know how to get past our germophobic defenses.

 

 

Knowing Patrick had been feeling a bit stir crazy, and also knowing it wasn’t wise to go out, I’d embraced Dr. Seuss’s birthday wholeheartedly with books and themed activities for mommy school. I’d promised Patrick a dinner of green eggs (jello eggs) and ham. So, sick or not, I threw on a pair of gloves and still got dinner on the table and prayed that was enough to protect anyone who needed it.

The night was rough, but at least I was already up to be able to watch to be sure Patrick was ok. By morning, I was a bit better, though exhausted. Patrick’s temperature was down. His Monday labs had shown elevated liver enzymes.. an early sign of illness.. and there were some small hints of dehydration. I saw this online on Monday, but because Patrick’s prograf levels were late posting, I didn’t get to talk to his doctor until the middle of the day Tuesday. We decided that if he wasn’t seeming sick, that we’d wait and check labs again on Thursday.

At 11:45 a.m. an alarm went off reminding me that Patrick’s new feeding therapist was due to come. Oops. I probably should have cancelled. But knowing that I was taking super precautions to protect Patrick and that stomach bugs aren’t airborne, we opted to go ahead.

Patrick grabbed my camera and took pictures of his room for me during the week. He is in love with his license plate collection. Cars+letters. What's not to love? Especially since they are sent to us from friends all over. His nurse brought him the logo off of a car, though and now he thinks he should collect those, too.

Patrick grabbed my camera and took pictures of his room for me during the week. He is in love with his license plate collection. Cars+letters. What’s not to love? Especially since they are sent to us from friends all over. His nurse brought him the logo off of a car, though and now he thinks he should collect those, too.

Amazingly, Patrick was a rockstar for feeding therapy. He ate, including swallowing, a few slices of lunch ham. And half of a soynut butter sandwich. Then he asked for hummus and carrots.. practiced biting and chewing the raw carrots (though still not ready to swallow those.)

Sure, it made his belly pretty unhappy. But Patrick only knows unhappy bellies and so he didn’t mind. And after she left, when I made myself a bowl of Progresso beef stew, he decided he wanted to join me in eating that, too.

Note the pouch in Patrick's mouth. We went shopping that morning and Patrick spotted these pouch baby foods. We had talked about trying purees with his feeding therapist. Patrick had seen his friends with applesauce and decided he wanted these. He had a "smoothie' in his hand for 2 days straight. Then I gave him peas. Now he won't touch them.

Note the pouch in Patrick’s mouth. We went shopping that morning and Patrick spotted these pouch baby foods. We had talked about trying purees with his feeding therapist. Patrick had seen his friends with applesauce and decided he wanted these. He had a “smoothie’ in his hand for 2 days straight. Then I gave him peas. Now he won’t touch them.

Yesterday, I finally was feeling better. Patrick got up in the morning just bouncing off the walls, though. He asked me if we could “do move our bodies,” our Mommy school code for getting gross motor exercise in every day. And then he asked if it was exercise class day at the library.

It was.

And knowing that he really, really needed to get out, we chanced it and went to Mommy and Me exercise time at the library. The teacher there has seen us through 2 summers. I made sure we arrived early so I could explain what he’d been through and she was super careful with him. He did pretty darn well, actually. Better participating than I’ve ever seen from him there. But about 15 minutes in, he was too tired to go on.

That was ok. We went and picked books. I let him get his first library card. And we went home.

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It snowed Tuesday. Patrick was so excited to play in it. Only his 2nd chance this winter. So on Tuesday, sick as we were, we went out and shovelled walks. Wednesday, he was thrilled the snow wasn’t gone. He declared we were making a snowman. And a snow elephant. And a snow gorilla. He went to sleep talking about it.

And I woke him while it was still warm. The snow was all crunchy from melting and refreezing and not at all right for snowman making. This got me off the hook for the other creations. But we did manage a little snowman. And because I had carrots to give it a nose, Patrick was more than happy.

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Today we both were finally feeling better. Patrick got up a little too early, but it meant we were ready for labs. I was going to blog first thing, but the internet was down. So we dived into mommy school instead. The theme of the week has been fairy tales and today we learned about The Gingerbread Man. Patrick is a little miffed that the main character of the story got eaten. He has a lot to learn about fairy tales. It was a good theme, though. I was able to squeeze a little more math in that usual.

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Patrick is really, really mad at the idea of addition. He doesn’t like the extra symbols. He HATES the word “equals” (or as he says it, “eekso”). But today, by using teddy grahams that he was allowed to eat as we did the math, he played along a little bit better. Plus, I said “1 plus 2 makes” instead of “equals” and that helped.

I’m trying to be patient waiting to get Patrick a teacher. Not that I can guarantee that it will even make a difference for him. I just worry that I am not making ground on helping him catch up after all he missed this year. I really wish sometimes I could send him back to class. I admire moms who homeschool and are able to make that work in a consistent routine. Today was a good day. Patrick gave me an hour and a half before he got restless and asked to outside and I declared “recess” and let him go play in the remnants of snow.

I was hoping better looking diapers would have meant also better looking labs. But Patrick’s labwork this afternoon still showed elevated liver enzymes, dehydration creeping upwards, and an elevated white count. I called Patrick’s transplant team and asked if we should change his formula recipe and they opted to add back in some extra fluid for the weekend. I am sad he needs it, but at least I won’t be as worried about dehydration. Patrick’s been doing great drinking water and powerade and eating popsicles, but I was still worried.

Meanwhile, as long as Patrick is still looking and feeling happy, we will just keep an eye out. They might do some blood tests for a few viruses on Monday. But hopefully, things will get back to normal.

Tonight was one of those nights where things just felt comfortable and happy at home. Our bird, Max, was in a really cheerful mood.. simply playing. Patrick snuggled up in my lap to play tonight. Max climbed up, too and let Patrick pet him. (This is a HUGE compliment from Max, who is fairly bitey.) Brian was in his chair playing with a new geek gadget. And everything was right with the world for a little bit.

People have asked if we have a new normal yet. Some days I feel like we have found a rhythm. But so far, nothing sticks for more than a couple of days. We are still figuring it out. And as long as there are looming follow-up appointments and the hope of Patrick starting school just around the corner and little medical enigmas lurking… Well, it’s hard to imagine we’ll be settled for a while yet.

Before this mad, crazy week.. my mom and dad took Patrick for the evening so Brian and I could go on a date. After all we've been through, it was nice to just be laid back. We went bowling, had ice cream for dinner, then went to Home Depot and bought a mailbox.

Before this mad, crazy week.. my mom and dad took Patrick for the evening so Brian and I could go on a date. After all we’ve been through, it was nice to just be laid back. We went bowling, had ice cream for dinner, then went to Home Depot and bought a mailbox.

Transplant Day 110 and Home

Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration. – Charles Dickens

I am blogging tonight from my own bed. Patrick is in his bed playing instead of sleeping. Brian is at the computer in his office. We have been home since Saturday. It feels good.

I’ve learned a lot about home in the past several months. I have learned that the essence of home: the part that’s made of love and family and faith and shared joys and struggles… that part is fairly portable. For we made homes out of a variety of hospital rooms and out of a small, overcrowded room at the Ronald McDonald House. Brian commented that coming back to our house wasn’t home. Home was where we were, and when it would come back to us every couple of weeks, it really did feel like it was home to be all together.

But there is something about us all being beneath our roof own homemade home together that is very comfortable. It is nice to not share walls with anyone. To not share a fridge or a kitchen or a dinner unless we choose to. It’s nice to let Patrick leave me and not worry about where he has gone.

Picking up and moving on under 24 hours notice is, well, stressful and crazy and very disorienting. After my last post, I had a horrible time sleeping. I’d wake up for something little and then lie awake for an hour thinking of all that needed to be done for us to go. None of us slept well. And when Patrick was up early, we just got up and got to work. We had accumulated a lot of stuff over the 3 and a half months in Nebraska and packing it up in an order that would make some sense and be accessible during the trip home was no small task.

We rented a mini van to bring it all home in. Brian called it “the more comfortable version of a U-Haul.” With stow and go seating, he just put the seats flat. And we filled it. And entire mini van.

We tried to steal some goodbyes. Patrick’s teacher came over and brought some gifts and read one last book with him. We met up with the friend from church who helped to organize all the offers of help and meals and such that came from them for a playdate. (Patrick pulled out his g-tube by accident and I very cooly popped it back in right at the park.)

And then, I got THE phone call saying that everything was supposedly in order and we could go.

So we finished loading the van and cleaning out the fridge and we checked out of our room and we started driving.

We went about a third of the way the first night.. crossing most of Nebraska. Patrick did a lot better than I expected. We packed the back seat with pillows and blankets so he couldn’t lose his toys and I passed him snacks as we went along. I put on my bluetooth headset so I’d be able to answer calls hands-free and turned on an Audible book and we just drove and drove. It took me some time to figure out how to manage cruise control while following but eventually got the hang of it.

We checked into a hotel in Sidney Nebraska around 9 p.m. We made a mad scramble to get Patrick’s medications and formula somewhat on schedule. Then we went next door the Perkins for dinner. It was the only restaurant in town open that late and a game had just let out so they were busy and Patrick was barely staying awake.. But he really wanted his ham and potatoes and toughed it out.

And then we crashed and the big comfy hotel beds just felt SO GOOD!

Patrick was up early again the next day and so we got up, too, and got bathed and dressed and meds done and then grabbed some breakfast. Right after the 9:00 meds were given, we hopped back in our cars and drove again. I finished one book and started another. We convinced Patrick to go ahead and take a nap.

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I missed the sign saying we’d entered Utah. I was too busy trying to catch up to Brian after some slow trucks and a steep canyon had separated us a bit. And then, as I caught him, I started to notice that I recognized what we were passing. We were almost home. And having to stop to go to the bathroom in Park City about killed me because I knew how close we were.

We arrived home about 7 p.m. on Saturday evening to find yellow ribbons tied to the trees (that made me cry.) The house had been scrubbed clean by friends that morning. There was dinner waiting in the fridge and balloons in Patrick’s room.

Patrick was thrilled to be home. He immediately emptied his toy box. Everything looked exciting and wonderful to him. And to me. Though, I’ll admit, I was a bit frustrated to find that I couldn’t remember where I keep things in my kitchen.

It felt so good to lay down in my own bed and go to sleep.

That is one of the most often asked questions I’ve been getting. Did it feel good to sleep in your own bed? Well, yes.. it felt good to fall asleep there. But sleep didn’t come easy.

See – Patrick hadn’t fallen asleep alone in 3 and a half months. When I kissed him goodnight and walked out of the room, he started to scream. He got more and more panicked and angry. He said it was too dark. Patrick has NEVER been afraid of the dark. But I guess that is the byproduct of all of the trauma that he has been through recently. PTSD is VERY common in patients who have undergone a major medical ordeal like transplant.

I didn’t know what to do. I didn’t fit in Patrick’s bed. And I didn’t think he’s sleep with his lights on. So I said a silent prayer. And then I went in. I sat down next to him and told him I knew he was scared to sleep alone. I offered to help him say a prayer. He fell apart sobbing. It was heartbreaking.

I let him settle down and then told him I was going to walk away for just a minute and I’d leave a small lamp on for him. Then I’d come back. I still didn’t know what to do.

But when I went back, I got him up and held him on my lap. I read him a book. I told him we could leave the lamp on. I went out to my car and got the hot pack bear that he’d slept with in Nebraska on cold nights and warmed it up. Then I told the bear to take care of him and help him be brave. And I kissed him goodnight. And he snuggled down and was asleep within minute.

And I said a little prayer of gratitude for patience and wisdom.

And then I went and slept in my bed which felt great. But at 2:30, when I filled Patrick’s formula and changed his diaper, I somehow moved my back the wrong way.

After months of sleeping on too-soft mattresses, my back wasn’t so sure what to think of a nice normal firm mattress. And I couldn’t sleep in my bed anymore.

So no, I didn’t get a really great night’s sleep in my bed the first night. I ended up sleeping on the couch until 5, when Patrick woke up scared and I went and picked him up and we slept in the recliner in his room together instead.

Things have gotten better, though. Patrick still needs to sleep with “Louie bear” (named after Patrick’s ostomy.. long story) and with the light on. Sunday night, he only screamed and cried for about 15 minutes. Last night, he slept without tears. And tonight.. he sat up and played in bed just like he used to do.

And my back only hurt for a couple of nights and then got used to being in my bed again.

Sunday I went to church. It was VERY strange to be back. I knew I’d get lots of welcome from lots of friends and was a little hesitant about the attention. But I was happy to see them and it was ok. I told Brian I didn’t know where to go during the sunday school hour. I wasn’t sure I wanted the spotlight of going to the adult class.

He reminded me that Primary (children’s sunday school, where I am the music leader, but an assistant music leader has been leading each week)…still didn’t have anyone to play the piano. I voted for that. And I actually had a really great time. This is, after all, my favorite job in the church. And I didn’t have any of the responsibility.. Just the fun.

We had visitors for most of the afternoon.. my parents, my sister. Then, we went out to Brian’s parents. His mom had made us dinner. Ham and potatoes, special for Patrick. I remembered that I hadn’t heard anything about labs the next day and ended up making some phone calls to peacemeal something together.

Patrick’s nurse did come Monday morning. We slept in a bit and were barely ready on time. It took some time to update Patrick’s chart with all the new meds.

Because Monday was President’s Day, Brian didn’t have to work. We went out for breakfast.. I have missed Kneader’s french toast so much. It was yummy, though we established that their staff is either unwilling or incapable of making toast without butter for Patrick. Oh well.

Brian’s body was screaming that he needed a down day. So he took the job of supervising Patrick, who was still nostalgically exploring all of his toys. Meanwhile, I dove into Patrick’s room. We no longer need the drawers and drawers of IV supplies that we were using to give Patrick TPN. However, he does have a lot of new medications that we get 3 months of at a time. And he needs tube feeding supplies.

I worked all day, listening to Audible as I worked. And 3 boxes and a giant garbage bag later, I’d cleaned out the old supplies and moved in the new stuff.

That’s how the past few days have gone. Patrick and I try to get out part of the day to let him ride his bike or drive his car. The weather is like spring here right now… crazy coming from bitter cold Omaha… and so we only wear light sweaters outside.

But the rest of the day, I mostly clean. A friend came over and helped me clean out Patrick’s closet and his cupboard of craft and homeschool stuff in the kitchen. Today, I went through all of his toys and pulled out the old and broken stuff to make room for new. I filled both of our garbage cans. I have piles of boxes in the basement to donate. And I am maybe a little over halfway done with moving back in.

This is moving out of order. Usually, you clean out when you move out. You don’t move out, buy all that you want, then move back in and have to clean to make room for it.

Thankfully, being home means being surrounded by friends and family and help and meals just keep coming. I haven’t made an entree yet. And that has given me time to work.

I’ve also spent some time working on the business side of moving back home. There are claims to cover the cost of transportation to sort out. And there is getting homecare set up here. For some reason, that still isn’t done and I hope they figure it out before I run out of ethanol locks on Friday. (Thankfully, I received our month’s shipment of all the rest of our supplies right before we left Nebraska and that means no time crunch.) There are follow up appointments with doctors. Patrick’s GI, Dr. Jackson, has been great about being available to help us transition back. And figuring out how and when to go back to therapy. And e-mailing Patrick’s school so they can start working on all that it will require to get him back there when the time comes, which might involve hiring even.

It’s been a full week. But it is so, so good to be home. The stress is just what needs done and trying to keep Patrick entertained. Not the stress of being alone, but not alone.

I love the Ronald McDonald House. What would we have done without them? But there is nothing like being just here as our family and not needing to worry about anyone else. About knowing that we can pick up the phone and just call if we need something. About knowing where things are in the grocery store and what they should cost. And not getting lost trying to get to or from places.

I don’t want to let this blog drop and I’m sorry it’s taken me so long to get back to it. I don’t think well when I’m cluttered and all these boxes and suitcases have me feeling very cluttered.

But I know this journey is still just beginning.

Not only that, but I still have some things I’ve learned to tell you all about. Next time. Tonight, I’m gonna go snuggle up in my bed and go to sleep.

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Transplant day 86 and Sick, sick, sick

Well, I think it would be safe to say that the past 48 hours have been among the hardest we have been through. Friday, Patrick seemed to be feeling better. Well, except that he still had very frequent, black diarrhea (sorry, remember, blogging about intestines here, remember.) The team explained that bleeding in the GI tract wasn’t unexpected in an immune suppressed patient wasn’t entirely unexpected for an immune suppressed patient with Norwalk, a.k.a. norovirus.

Otherwise, Patrick was happy and playing all day. However, as the day went on, I started to feel worse and worse. I made a bit mistake by eating a great big, yummy burrito for dinner. About half an hour later my body told me that, yup, that tender tummy feeling meant that I had caught what Patrick has. Not a big surprise, given just how often Patrick had gotten sick while I was holding him the day before.

Well, my sweet husband saw that I was looking worse and worse and, even though he was also starting to realize he was sick, sent me back to the Ronald McDonald house for the night. Good thing, too.. I am sure I wouldn’t have been able to take care of Patrick at all that night. I was SO sick! But, on the way home, I stopped at the store and picked up medicines and gatorade and I spent the night trying to pull myself together enough to be mommy again in the morning.

And, amazingly, by morning even though I felt very weak, I was doing well enough to go back.

It sounds like Brian and Patrick had a pretty rough night.. changing diapers every couple of hours. When I came in, Patrick was laying on the couch and looking quite pale, but happy. I sat down next to him and asked him how he felt. He said he was ok, but I’d check again every few minutes. Then his nurse gave him his morning medications. I asked how he felt, Patrick said, “sick!” and then started throwing up blood.

We put his g-tube to drain so he wouldn’t throw up anymore.. but that kind of seemed to be the kick off for a rough day. Not long afterwards, he started to act as though his belly hurt. That got worse and worse throughout the day. (We think it was stomach cramps and maybe gas.) But at its worst moment, Patrick was screaming in pain, curled up in a ball, and not willing to be touched.

Finally, they got some pain medicine to stay down and he fell asleep, which made a difference.

Because of the bleeding, they decided to give him a transfusion. Those run over several hours and we let him rest while it was running. His color started to come back. For most of the day, Brian and I took turns laying in bed with him holding his hand and helping place stethescopes and thermometers so he trusted they wouldn’t hurt him. (This was a good way for sick mommy and daddy to rest, too.)

Meanwhile, we sipped gatorade and slowly started to eat again.

Then, once the transfusion was done, we made him get out of bed to be weighed. I hate doing this: making him get up and move when he’s in pain. He just clings to my neck and begs me not to hurt him. But moving helped his body reset a bit and over the next couple of hours, his pain started to improve.

By evening, Brian told Patrick we needed him to get up and walk again. We got him out of bed and he sat on the couch playing with toys until almost 10.

And last night, he slept peacefully all night. That was amazing. We ALL needed the rest.

I am feeling 80% better this morning. Patrick’s pain seems to be gone, though he is really guarded.

The plan discussed with the team yesterday was to take him down for an endoscopy today if the bleeding hadn’t stopped. Patrick’s diarrhea has slowed. But his g-tube has been to downdrain and there is still blood there and in his occasional diaper, so I’m assuming that is still going to happen. I know he was put on the schedule yesterday because someone from anesthesiology already came to talk to us.

I am trying to find the right way to break this news to Patrick. I’m sure he’s terrified of anesthesia here because it has always ended in surgery. Not sure I can explain to convince him otherwise.

But I hope we can find some answers that will help him finish getting better. We knew taking down Patrick ostomy meant more endoscopies and so this is going to be a part of his new routine.

I hope that all of us being sick together in the hospital doesn’t become routine. Sure, it’s nice that we can pick up a phone and order food and the nurses really have been kind to all of us. And, since he’s in isolation, we at least aren’t putting anyone else at risk visiting here. (In fact, it’s probably better than hanging out at the Ronald McDonald House). BUT I don’t want this to be the precedent for the new normal in illness after immune suppression.

We know illness is going to hit him hard every time and be hard to shake. But hopefully the next one doesn’t take down the whole family. Right now, we really hate Norwalk.