Tag Archives: Utah girl in Omaha

Transplant day 349 and the one-year follow-up

We just got back from Omaha again. It was a short trip. Barely more than 48 hours. In some ways very routine and unexciting. In others, very eventful.

About a month ago, I remembered to ask Patrick’s transplant team if he was supposed to have a one-year follow-up appointment. They said yes.. and then I asked if it really had to happen right on the transplant anniversary. After all, remember, Patrick’s transplant happened both on his birthday and on Halloween. We didn’t really want to spent October 31st at a doctor’s appointment.

They said it didn’t matter, and so we decided to take advantage of Patrick’s fall break. We checked him out of school on Wednesday at lunch and hopped on a plane to Nebraska.

He was crazy excited this time. Or may anxious. I can’t decide. He was happy about the idea of seeing his nurses and couldn’t seem to let it go. We tried to explain that this was just a checkup. But he didn’t settle down until after the appointment. I think because then he knew it was all ok.

Wednesday night, because Patrick was bouncing off the walls, we checked into our hotel but then headed down to the riverwalk to try to burn off some of his nervous energy with a stroll along the Missouri. It was really dark. And it took a really long time for Patrick to settle down. But eventually, he did. And it made him tired enough to sleep pretty well that night.

The next morning, it was cold. Especially for us, coming from Utah’s record-breakingly warm fall. We tried to go to a playground but got too cold. So then we went for a drive just because. We decided we were hungry and Patrick asked for chicken nuggets. So we drove to McDonalds and Patrick discovered McNuggets. I discovered that Sweet and Sour Sauce is made with peaches and so there really are no Patrick allergy-friendly dips available and we settled for ketchup.

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Finally, it was time for the appointment. Patrick hadn’t finished lunch so we brought it along and as the team came in, Patrick was munching on french fries. He then decided he was still hungry, and we added on a lunchable.

The appointment was mostly routine. They recorded his vital signs and growth, went over his medications, asked if anything big had changed. Then the surgoen joined us and looked Patrick over. He said Patrick looked great. He said to go ahead and discontinue one of his antibiotics. And we talked about when and how to decrease his immunosuppression one more level. Then I asked some questions I had. Patrick played with the doctor and his cell phone. And then they went on their way.

Posing with some statues at the zoo

Posing with some statues at the zoo

The dietitian came in to talk to us next and we decided to go ahead and stop Patrick’s tube feeds and see if he can keep up with his nutrition orally. That doesn’t mean that for sure this will work. It means a really focused effort to make sure he’s eating and drinking enough. But it also means some new comfort and freedom for him.

Not doing tube feeds means having to figure out some other things. Like teaching him to take a chewable multivitamin instead of giving a liquid. It also means that we have to figure out a way to give him 1 teaspoon of baking soda in divided doses throughout the day. Right now, that can go along with his meds in his g-tube. But one day, they’d like a goal of him not needing anything by g-tube. They’d even like to remove his g-tube. And so eventually we’ll need to find a way to get him to take baking soda in food.

A few weeks ago, the hospital’s PR department called and asked if we would be willing to let a news crew come to Patrick’s appointment. So there was a cameraman there filming the whole time. (Well, except when the dietitian came in. She is camera shy.) And then we went and did interviews afterwards. It’s so hard to capture this big story in just a few words. I hope we did it justice. We tried taking them upstairs for Patrick to visit with some nurses. That just ended up being really awkward. Oh well. One day, the story will air and I’ll share it here. We hope it gets people talking about organ donation. And maybe express our thanks to Patrick’s donor’s family and also the amazing medical team who got him this far.

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Couldn’t resist this photo op.. given that these two missed wearing their matching minion costumes last Halloween.

We stopped tube feeds that same night. Patrick was really restless in his sleep, too. I don’t know if that was because of the missing tubes. Or if it was because I snore. Or because he discovered how truly heavenly comfy sleeping in down pillows is and spent the whole night trying to figure out if he wanted to sleep in the down pillow more or sleep snuggling with me more. I finally told him I didn’t mind him sleeping on the pillow. He said, “You won’t get mad?” And I said, “No. It’s a soft, soft pillow” and he snuggled down and went to sleep. He’s asked for a down pillow for his bed at home.

After the appointment, we had 24 hours before our flight home. So we did our best to find some family fun. We went to the zoo both days. The first, Patrick wanted to just play outside. We got jumbo pretzels that we ended up sharing with some very demanding peacocks.

 

And we let Patrick play on the zoo’s playgrounds that we’ve mostly shied away from in the past year. Then, we went to find dinner in Omaha’s shopping district called Old Market. We ended up at a family italian restaurant called Spaghetti Works where Patrick got to experience his first salad bar. He ordered grilled cheese, which turned out to be a very disappointing sandwich made of two pieces of cheesy garlic bread stuck together. So instead, he ate my spaghetti.

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The next morning, we packed up, ate breakfast, did laundry. Finally, we had to check out and so we went back to the zoo. Brian splurged a bit and bought all-day ride passes and instead of looking for animals, we spent the day riding stuff. We rode their steam-powered train. (Makes all other zoo trains seems like a huge disappointment.) We rode the carousel. We rode the “ski-fari”, in other words, one of those ski-lifts made amusement park ride.

The ride passes included admission to the stingray encounter which actually turned out to be awesome! They have trained their stingrays to take a piece of fish from the back of your hand with a certain command. And therefore, because they know this command, if you put your hand in the water they right way, they’ll swim over and put their mouth over your hand and suck. They call it a kiss. Also, because guests feed them, the stingrays will come to guests looking for foods. So instead of gathering hoping to snag a quick touch, you have stingrays coming up and reaching out with their fins to get your attention. It was really cool.

It took us all day to figure out how the zoo tram worked and we happened to go exactly opposite the most efficient way. However, that did earn us nice walks through the aviary and lemur island exhibit, which we didn’t do much of in the winter. And then we had a nice long ride to end our day at the zoo.

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We went back to Old Market for lunch. Brian remembered that I’d heard of and really wanted to try a restaurant/bakery called Wheatfields. They have a reputation for being really allergy conscious. We caught them 5 minutes before close so we made a hurried lunch decision. But it was delicious, nonetheless. I ordered Patrick his first cream soup. (New option without a dairy allergy.) He had the creamy chicken and rice. Ok. We both did. I ate about half of it because it was huge. But he did great with it, which gives me courage to try more. If you have a great cream soup recipe, sent it my way.

And then, we caught the flight home.

I am super, duper proud of Patrick who made it the entire trip in underwear and without any accidents.

In fact, I’m just extremely proud of Patrick. He discovered this old video on his tablet taken a couple of years ago. It’s of him and me playing at the table. Nothing much. But I can see so many changes.

Patrick’s speech has come SO far in the past year. In the video, he is licking and spitting out fruit snacks and asking me what happens if he swallows. Now he is eating full meals. In the video I’m telling him not to drink too much water so he won’t make himself sick. Now the only concern is if he’s drinking enough. He’s still himself. Dramatic. Adventurous. But without the limitations.

He has come SO far.

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A transplant recipient’s guide to Omaha on a budget

I never blogged about our “vacation” days in Omaha. See, insurance pays for Patrick and one parent to travel for care.. but if daddy comes, too, then we worry about airfare costs and sometimes that means staying a few days. We were  beyond bored of our usual Omaha/Ronald McDonald House activities. So Brian declared that we should make it a vacation and try to find new things.

Sometimes circumstances lead you to discover things you might not try otherwise. Like today I had roasted red pepper hummus, veggies, saltines minis and chicken nuggets for lunch.. something i may not have ever planned for lunch if not for short gut and oral aversion and food allergies. But back to travel. Brian did his homework and here are a few discoveries.

Old Market

One of the things that you may not guess about our family because I’m not exactly fit is that we are a fitbit family. Especially on vacation. Brian loves to walk. I love to walk with my family. And so we walk. So of course, when we arrived in Omaha, after unpacking and dinner, we went out for a walk. We heard often about a place called Old Market when we were living in the city. But it was brutal winter and bitter cold for walking and we were too poor and immunocompromised for eating out. So we didn’t go.

Visiting Old Market was high on our list going back. It’s a pretty nifty few blocks of downtown Omaha. Lots of dining, some shopping, and on every other street corner, a musician. Not the creepy of musician begging on the street that you aren’t sure if you should cross the street. Just honest to goodness musicians with their instrument cases in front of them. A drum line. A girl in a flowy white skirt hula-hooping to her friend’s music.

Patrick was in his adaptive stroller and we learned that the combination of cobblestone roads and staircases made this the trickier way to explore the street. (Most businesses had ramps on one side, but few had them on both.) But it was a fun adventure nonetheless. Maybe someday we’ll have time and money and healthy immune systems and we’ll find a place to eat there. A few caught my eye.

http://www.oldmarket.com/

Henry Doorley Zoo

Omaha boasts one of the world’s  best zoos and, though we visit every trip, we never feel we have seen it all. It changes with seasons and because the habitats are so real, the animals in view are always changing, too. We spent Thursday morning there in beautiful weather on their spring break, so crowds were bigger and we stuck to more outdoor exhibits, caught the seal training, walked around the rhinos.

http://www.omahazoo.com/

 Lewis and Clark Monument

Right before returning home in February, Patrick and I went for a drive. On a whim, I followed some historical markers and we ended up driving to a historic monument in the bluffs above Council Bluffs, Iowa. My little Utah heart that grew up looking down on the Salt Lake Valley from various vistas leapt for joy to find an overlook of Omaha. And I knew I needed to bring Brian back.

So, Thursday evening, when we had just enough time for a drive after dinner, I directed Brian up to the monument. His reaction was almost the same as mine. And of course, Patrick did what he did last time. He started exploring. He noticed a set of stairs and a little trail going off to the side of the monument. We resolved to come back and explore that trail. Because we grew up in the Utah mountains and that is what people who grew up exploring mountains do.

The next day, we packed a crazy little dinner of ham sandwiches and pringles and jell-o cups and we headed out in the late afternoon to explore. We set our watches and checked our fitbits to know how far we’d gone. And we started walking.

We walked around this sometimes steep, often narrow and overgrown but clear train that followed the edge of the bluff. And then we got to where we could see the trail led down into the subdivision at the bottom of the hill. And we turned around and we went back thinking that it was nice, but a bit of a bust.

On the way back, we learned that the actual destination was DOWN the bluff. Down a nice steep incline by the railroad tracks, at the base is a spring. So if you ever want to go hiking there and you don’t mind really steep trails, so explore. It was a bit too much for us with Patrick and my asthma that hates hills. At least this trip. But do go. Especially if you can go in early spring. That was the perfect weather for a hike.

We picnicked overlooking the city. Patrick ate most of his ham sandwich. As much as most other kids would have.

http://lewisandclarktrail.com/section1/iowacities/CouncilBluffs/monumentpark.htm

Strategic Air and Space Museum

Of course, morning were still nippy so we didn’t want to hike in the mornings. Instead, we took a field trip out to Ashland, NE to visit the Strategic Air and Space Museum.

My father-in-law is an engineer. He loves planes. My husband grew up loving planes. This is one he’s wanted to explore for a long time. And it was awesome to let him take his son and share that same love of planes.

The museum has two hangars full of planes, mostly old military planes. Brian can name most models by sight. His eyes light up as he tells me stories of what they were used for. Patrick loved peeking in cockpits and engines and playing with the flight training demo. Though he’ll tell you we didn’t let him ride in any planes because we didn’t have quarters to put in the little ride on planes they had. (You know, the kind you find in front of grocery stores.)

After spending the whole morning in the museum, we bought a parachute toy in the gift shop and Patrick and Brian took turns trying to get it to fly off in the wind on the front lawn.

Then, we went and found the entrance to the state park next door. Didn’t go in, but bookmarked it for next time. We took a little drive through Ashland itself because we love small towns and were hungry. Then we took country roads back into Omaha. Again, hoping to find a quaint little place to eat. But we ended up at Five Guys instead. After several days of eating kids meal hamburgers (Yes, you read that right. Patrick, started eating burgers this trip.) this was one burger Patrick had no interest in at all. Kids and their tastes.

http://www.sasmuseum.com/

Donut Stop

Have I ever mentioned that finding little bakeries is a favorite foodie activity of ours on vacation? Donut and cupcake shops hold a special regard for us, especially. So when Brian found an all-night donut shop in Omaha, he knew we needed to go. After our hike above Council Bluffs, we took a meandering drive to our room through that city. And, along the way, Brian declared we were in the right neighborhood for donuts.

I can’t really capture the essence of this place in words. It was NOT the seattle donut shops we have frequented. It opens in the evening and stays open all night till morning. The stop itself has two big display cases full of a decadent assortment of donuts. And behind the case, two little old ladies frosting trays full of donuts more for the night. Our order was rung up on an old fashioned cash register that popped up our totals on numbered tiles and dinged when the drawer opened. The walls were adorned with pictures and souvenirs from Hawaii and an abundance of pictures of cats.

It was one of the most quaint and unique bakeries I’ve ever been into. We all think the donuts were amazing. Especially Patrick, who suckered me into letting him have his cake donut with pink strawberry frosting on it, even though I knew his belly might complain later.

I’m sure we’ll be back.

http://www.yelp.com/biz/donut-stop-omaha

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Bob Kerry Pedestrian Bridge

Saturday morning, we drove through the traffic of a St. Patrick’s Day parade. We needed a less busy place to spend the morning and Brian needed some more steps. There is a bridge that crosses the Missouri River from Omaha to Council Bluffs. There is also a park on either side, both of which are worth a visit on their own. But our goal this morning was to walk across the bridge.

So, we grabbed some Taco Bell. (Waffle of the waffle taco was another hit for Patrick.) Then we bundled up against the Nebraska wind, put Patrick in his stroller and away we went. It was one of the colder days we experienced there so Patrick ended up wearing Brian’s hoodie.

It was fun and peaceful to be out for a walk above a river. Even if Patrick was in a grumpy mood and didn’t want us to hold hands or push his stroller one-handed or do any other number of things that made him feel out of control. After a week of walking, I knew I needed to do more walking when we got home. I was sore and tired. But it was fun.

And when we got to the Iowa side, we walked down in their park to the riverfront and let Patrick out to run for a little bit before heading back.

http://omaha.net/places/bob-kerrey-pedestrian-bridge

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Pizza in the park

For lunch, we met some friends at a park. It was one of the most perfect weather Saturdays of the year. The kids (with help from dads) played on the playground. And for lunch, we grabbed some pizza from one of our favorite unique-to-the-area pizza places, Mama’s Pizza. I highly recommend the chicken club pizza.

http://www.mamaspizzaomaha.com/

Pioneer Courage Park

Saturday, after enjoying an amazing roast pork dinner provided by volunteers at the Ronald McDonald House, we checked out of our room and moved to a hotel. We wanted breakfast and a smooth checkout since we needed to leave for the airport around 6 a.m. on Sunday.

We went to a hotel in downtown Omaha and, of course, after checking in went out for a walk. We walked past the ball park and arena and a mural that I don’t know how I didn’t notice was there until just this trip. The end destination was a place called “Pioneer Courage Park.”

The original address we were aiming for was a different sculpture park that we really need to go and see on another trip. But we found our actual destination almost by accident and were so glad to make it there.

Omaha was kind of a gateway for pioneers settling the American west. Especially Mormons. And many people know to travel back and visit Winter Quarters and the Mormon Trail Center. (https://www.lds.org/locations/mormon-trail-center-at-historic-winter-quarters). However, I think I’m going to add this park to my list of recommendations to those interested in that history.

This is an enormous bronze sculpture of a pioneer wagon train. Yes, a train. Several wagons. It is HUGE! You look across the street and there is a herd of buffalo across the street. As I understand it, go a little further and you’ll also find a flock of geese. Anyway, I have never seen the varied stories of the pioneers that settled the American West so completely and emotionally depicted all in one place. This sculpture was amazing.

And Patrick got to chase a bunny rabbit in the dark and jump off of slabs of rock. So we all had fun.

http://www.visitomaha.com/listings/First-National-s-Spirit-of-Nebraska-s-Wilderness-and-Pioneer-Courage-Park/57322/0/#.VRHXnI54rV0

We got back to the hotel and Patrick was greeted by the desk clerk with a gift bag full of toys. As we checked in, she asked what brought us to Omaha. She didn’t expect “transplant followup” as an answer. And she went out of her way to add some extra love to his day. People are amazing.

So – There you have it. How to vacation/staycation on a dime while immune compromised in Omaha, Nebraska. It was fun to come back to the Ronald McDonald House each day and tell the staff about where we’d been or where we were going and hear the interest in their voices about the places we were discovering that they hadn’t even been to themselves. It felt so good to be doing something DIFFERENT while we were there. Making some memories of our own choosing there. Kind of claiming the city for our own.

Transplant day 96 and snow days

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn't any snow on the ground.

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn’t any snow on the ground.

My phone rang at 5:30 this morning. It was a recording from Omaha Public Schools announcing a snow day. This is the second snow day of the week. Church was also cancelled Sunday. It is snowing. A little over a foot has fallen.

I am trying to decide if this is premature. The parking lot of the Ronald McDonald House has snowbanks 10 feet high where the plows piled snow. And on Monday, I barely got my little two-wheel-drive car to go up the hill on a road with minimal plowing. I’m not sure that this is more or worse snow than we get in Utah. But the roads are less safe for it. They are narrow. VERY narrow. With no shoulders or turn lanes and cars parked down both sides. Also, everything is very hilly. So, while I grew up on the edge of a valley and our hills might trap us at home while the rest of the valley could manage to get around. Here, you might encounter 3 very steep streets within a few blocks of each other.

I don’t blame them for keeping the school buses home.

It didn’t affect us much with Patrick inpatient. We just watched the snow out the window. Snow days have fewer volunteers and more staff that got stuck trying to come in and fewer child life activities. But we are cozy and warm and protected from the weather. We have lots of toys and TV and crafts and books.

The less snowy days have provided ample help. We had 3 volunteers come by yesterday, giving me hours to get away and grocery shop and clean and rest. The day before, child life and music therapy and physical therapy filled in because there weren’t volunteers and I got to go back to the house and do laundry and pack clothes for a few more days. With nurses taking care of the medications and diapers and formula if I happened to sleep through those needs at night, I’ve actually had a chance to mostly catch up on my sleep in the past 2 weeks.

And that’s very good news. Because this morning, Patrick’s nurse practitioner came in and said that adding extra fluid to Patrick’s feeds had caught up his hydration and she was going to recommend discharge. It took a bit longer for rounds to come around, and I still wasn’t getting my hopes up too much. The added volume that giving more fluids required had made Patrick’s belly gurgle and dump during the night again and I had just changed 3 diapers back to back so I was pretty sure they weren’t going to let us go.

They came around for rounds and asked about Patrick’s prograf levels and they were borderline high and I was almost entirely positive, especially since it was a snow day, that they’d want to keep him one more day.

But, they said that since Thursday mornings are lab days, that homecare could provide the same care they were providing and so we could go. I settled in for a long wait, as discharge has taken till dinner the last few times. But an hour later, Patrick’s nurse arrived with some patient belongings bags and a cart for me to pack up our things and by 1:00, I was signing discharge papers.

Moving us back in always takes work. For some reason, discharge and the monthly diaper delivery always come together and that takes a good hour to make room for in this tiny room as I clean out and haul out old boxes.

But, we got everything settled in. We found time to work on a valentine’s craft, even. Patrick was obviously exhausted and overstimulated and couldn’t focus on much of anything.. but we made it through the evening ok. The dinner group let him start eating early when they saw us come down for a snack. Patrick was tired enough that he preferred playing in the room today. And so things are unpacked and put away and the formula is mixed up and medications reconstituted and line cared for and teeth brushed and pajamas on and by 9:30 tonight, Patrick was snoring in his bed.

I really should get to sleep. I know I’ll need to change at least two diapers and Patrick’s formula bag still needs refilled every 5 hours or so.

It is good to be out. And as discouraging as this hospital stay was, it seems we actually made some ground. We found the cause for the random bleeding I sometimes saw and treated the ulcers. And we found that Patrick can eat enough food to have reduced his overall tube feed rate by 10%. That isn’t much, but eating 10% of his calories is a big deal considering how little he ate before and how few foods he is used to eating.

The doctors have assured me over and over again that he shouldn’t still be contagious. They even went so far as to clear him to attend child life activities at the hospital, which is definitely a statement that they don’t see him as a risk. His gut, however, still isn’t back to where it was before the virus. That is going to take time and patience and lots and lots of diapering supplies.