Since last I wrote..

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

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

img_20180601_1103583950146325746344400.jpg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

Happy Transplant-a-versa-hallow-birth-day Patrick

This post is quite belated. November was a challenging month which deserves its own post. But I would be quite remiss to skip over a post about Patrick’s exciting October 31.

This year was a huge milestone. Patrick’s 7th birthday. And the one year anniversary of his transplant.

IMG_2201

Last year, we spent Patrick’s birthday anticipating transplant. I had only just wrapped his presents and gone to bed when the phone rang telling us a donor had been found. Around midnight, we were our local children’s hospital being admitted and transferred for insurance purposes and bidding goodbye to Patrick’s faithful GI doctor. A little after 1, we boarded a life flight plane. We were awake (and tearful) all night, arriving at Nebraska Medicine around 6 a.m.

We caught a little bit of sleep and then tried to cram in as much birthday and Halloween celebration as possible. Around 1 p.m. they took Patrick down to have a central line placed and he was kept asleep for the rest of the day.

His long-awaited and sorely needed multi-organ transplant was an amazing birthday gift. The kind of gift from a stranger that still takes my breath away.

However, from a celebration standpoint, that wasn’t much of a birthday. And so, this year we decided that we had a LOT to celebrate.

So, several months ago, we asked Patrick’s transplant team if it was safe for him to celebrate in Disneyland. And they answered with a very emphatic “YES.” In fact, all but swore they’d do everything in their power to get him there. And so, we bought tickets and made plans.

IMG_2217

Parent teacher conference fell just right to give a long Halloween weekend. We left for Anaheim Wednesday night and I couldn’t help see both parallel and contrast as we touched down in the dark and traveled to our room exhausted from a late night of travel.

Here’s some of the highlights from the rest of the trip.

Thursday

We stayed for 3 days. In my mind, a day for each occasion: Halloween, Transplant & Birthday. When we checked into guest services to request a disability card that would allow Patrick to wait for rides without standing in lines. When they asked why and I explained that he was celebrating his transplant anniversary and is immune suppressed, they handed us all I’m Celebrating badges. Patrick insisted we wear them right away.

IMG_2138

Disney Cast Members are trained to watch for badges and offer congratulations. However, I’ll admit that few expected our answer of celebrating a year since transplant. It started to feel a bit strange to keep explaining, so we snuck the badges off when we went back to our room and didn’t pull them back out till we were celebrating birthday.

We decided to head straight for the ride that Patrick loved best last trip. Radiator Springs Racers. What we didn’t think about was that Patrick always has had a good chance to warm up on calmer rides before this fast ride with big ups and downs. He was terrified. But insisted we go again and, well, after the second go broke down crying during the ride. He’s a thrill seeker, but this year Patrick also finally had a sense of fear and we had to be a little bit more careful what he rode on.

We abandoned that plan. And switched to kiddie rides in Bug’s Land. Patrick was much happier there. In fact, he had an awesome time there!

After an afternoon break and nap in our room, we got dressed in our Halloween costumes and headed back to Mickey’s Halloween Party.  Patrick had asked to dress as mechanics, so I’d put together some family costumes of Mater’s Pit Crew. We headed to Cars Land to take a couple of pictures and the costumes attracted extra attention from cast members who offered pictures and even some fast passes and we ended up there longer than planned.

Unfortunately, as we arrived at the gates to Disneyland Park, we realized that we had forgotten to pack Patrick’s evening meds. Howie bravely headed back alone to get them while Patrick and I headed in to find something to ride. With crowds as they were, we were just getting onto the first ride when Brian caught up with us.

We rode a couple other rides in the dark. Then decided to give trick or treating a go. We’d planned to skip it, but when we discovered that there were lower sugar nut free treats available in each cart, and when Patrick was having a great time with it, we hit a few more trick or treat lines. We caught the electric parade and then watched the halloween fireworks before heading back to our room.

Friday

Friday was incredibly busy in the park. That meant fighting crowds in a lot of places and we didn’t ride as much as usual. We did the obligatory multiple rides in Autopia, met a couple of super heroes, and then decided to let Patrick try a couple of grown up rides as he was seeming braver. The was the first time we’ve tried Matterhorn. Unlike other rides, the Matterhorn bobsleds don’t allow for sitting side by side. The meant Patrick couldn’t bury himself into daddy’s side.  I guess he found it fun, but scary. The ride stopped and I turned to see if he was ok (remembering tears the day before). Patrick was lying down in the bottom of the sled.. laughing. I guess it was scary until he got where he couldn’t see.

Big Thunder Mountain Railroad was open for the first time in the years we’ve taken Patrick. He was nervous on this one, but actually really enjoyed it. He asked to ride it again, but with crowds as they were, we ended up grabbing lunch and then heading back to our room to rest.

By the time we came back, it was night and the idea of a roller coaster in the dark was scary. Instead, we headed off to Dumbo and he was much happier.

That night, we decided to watch Fantasmic. We opted to request a seat in the handicapped section so that Patrick could stay in his stroller. That always end up a bit awkward. Patrick is so much younger than everyone else there. But he quickly made friends with a grandma who was sitting there alone while her family was seated somewhere else. Her birthday was on Halloween too, so they had an instant bond.

We tried to stay put after the show for fireworks. Alas, though, Patrick was doing an awesome job in underwear for this whole trip. (He had a couple of accidents on rides, but mostly was good about asking for and making it to the bathroom.)  And halfway through fireworks realized he needed to find a restroom. Oh well.

Saturday

Thank goodness Halloween meant some limitations on entrance and crowds went back down in the park. It was so strange to be there knowing it was Halloween for everyone. Lots and lots of people in costumes. But we’d had our Halloween and were purely doing birthday.

We did some back to back rides of the kiddie roller coaster in Toon Town because there crowds hadn’t found the back of the park yet. At Minnie’s house, the cast member made a big deal of Patrick being there on his actual birthday.

In fact, Patrick absolutely delighted in wearing his birthday badge and having EVERYONE wish him a happy birthday everywhere he went.

After getting our morning fill of rides, we hopped onto the monorail and rode to Downtown Disney. There’s a fairly authentic Italian style pizzeria restaurant there called Napoli. Patrick DEVOURED the pizza there.

Seriously good pizza
Seriously good pizza

Then we went to get his present. A car from Ride Makerz. (This is the car lover’s version of Build a Bear. You design your car. It sounds like it’s starting out fairly inexpensively. But once you add remote control and a rechargeable battery and custom wheels and all.. well… We knew going in. Thank goodness Patrick’s fancy was fairly restrained. The experience was worth it. He loved getting to assemble the car with power tools. And he loves his truck.

We had reservations for dinner. Disney is always so good with dining. But we learned that we have entered a new realm for them. See, they are AMAZING at following allergy precautions. They won’t take a risk with any thing you declare to them. And they have lots of alternatives.

However, we knew going in that Patrick was going to was to order the mac and cheese. In fact, he’d been rather picky all trip and we were fairly sure that the mac and cheese was the only food he’d order on the menu.

So we asked the chef to come visit us at the table to make sure that the pasta and other ingredients they would be using were exactly what I expected and would be safe. Some pasta is made with eggs and unsafe. However, for Patrick pasta manufactured near eggs, as long as it isn’t concentrated eggs, is ok.

Well, before we knew it, we were being visited by the restaurant manager who explained to us that they would not be able to serve him any pasta. Or the cake that we’d special ordered for his birthday.

Only after I’d made a very in depth explanation of the parameters we’ve worked out with Patrick’s allergist would they allow us to order these foods for him.

So lesson learned. Disney is great at avoiding allergens. But don’t tell them your grey areas out loud. I think that’s going to be an ongoing rule as long as Patrick needs to eat food’s that he is mildly allergic to.

Anyway… once food was ordered the dinner was very nice. Patrick beamed at his little miniature cake and really, really loved the sorbet they brought him , too.

After dinner, we headed over the World of Color show. Our dining package reserved us seating in a specific area. And then, on top of that, Patrick had his handicapped pass. However, that really only led to a lot of confusion. It took a lot of walking to find the area we’d be seated in. And once we got there, we weren’t so sure it was where we wanted to be.

The reserved handicapped section was full. Beyond full. Like they had to make people get up and move to make room for us. And they just kept cramming people in.

Really, the problem came down to large family groups that didn’t understand that a family of 12 was too big to all squeeze in with one family member there. Alas, that meant that as we were rule abiding, our family ended up divided. They seated us on a bench so that we could fold up Patrick’s stroller and make room for others. And then they needed more space and Brian got up to allow it. Meanwhile the gigantic family grumbled about how unfair it was to ask them to be separated.

I think maybe next time we’ll have to look more closely at whether or not we can do regular seating. Thankfully, Brian stayed close enough that we could still see each other and the other people he ended up standing with (who were also displaced) were very kind. The show was really nice and Patrick really enjoyed it.

And we went to leave, but Patrick kept talking us into one more ride, and then another and then another and we ended up lingering and riding and then doing a little more shopping so that he ended up getting to stay up till midnight on his birthday.

Monday

IMG_20151102_191605 IMG_20151102_151644

We came home Sunday and had a quiet day at home. And then Monday evening we invited grandparents to come join us for birthday cake. Mixed in with needing to run back and forth to help with Patrick’s school to help take him to the bathroom that made for quite the complicated day. Never decorated a cake in half hour increments with errands in between. But it came together and Patrick loved the little quiet family party at home.

And by the end of the weekend, I was quite satisfied and quite done with reminiscing about how far we’ve come. It is truly miraculous to see what this year has brought. And also, it is time to get back to normal.

That’s what we hope Patrick’s 7th year will be. Just a nice normal year where he can keep growing and we can settle into the normal that we’ve always dreamed for him.

Daddy in Norway

A couple of months ago, Brian came home and told me that the business associate that was visiting from Oslo had surprised him with an offer he didn’t think he could accept. Because the internet is a global enterprise, you shouldn’t be surprised (though you probably haven’t thought of it) to learn that web companies sometimes do business with other companies overseas. This particular one was holding a conference near their headquarters in Oslo, Norway. Brian was invited.

You may not know about me, because I live so deeply in the special needs mom world, that I was a student of linguistics in college. That I love other cultures. That I taught English as a Second Language. That until we became parents that we were travelling as often as occasion allowed. No. If my husband was invited to visit a new place in Europe, I wasn’t going to say no.

I did tell him that I couldn’t promise that I wouldn’t be jealous and/or that I wouldn’t have a hard time holding it together while he was away. But I did promise I would try.

So, last Tuesday as I was dealing with a fire at home, Brian hopped on a plane to Norway, with a connection in Amsterdam. He spent the first part of his week in the conference being shmoozed by the hosting company, with a little bit of touring Oslo in the meantime. Then, he headed off with the friend who’d invited him to a cabin in the Norwegian forest where he biked, boated, and even walked barefoot through a forest so moss-covered that it was as if the forest was carpeted.

I make it a policy to not stay home and sulk if I can help it. A great deal of time and energy was spent working on taking care of our little house fire.

Thank goodness reinforcements also came on time to help with that. With summer starting, the neighbor girl who is doing respite for me started. She worked 3 days last week and it was life-saving. As an added bonus, the neighbor’s 10 year old called and came over a couple of times during the week to play with Patrick. He adores her and it really helps me. Then there was the amazing friend of mine who came to my house after getting her own boys up and ready for the day to help me get Patrick and myself up and ready by 8 a.m. so that we were keeping in habit between Nebraska and the start of summer school. I swear I only showered that week because of her help.

Two other friends worked together to bring in a meal Tuesday night and that, combined with leftovers of a frozen lasagna and spaghetti I’d made Sunday, made up most of what Patrick and I ate that week. I think the most complicated other cooking I did was some vegan macaroni and cheese from a box.

I’ve become aware of a tendency between Patrick and myself to build upon each other’s negativity. If I am in a bad mood and criticize him, then he becomes more defiant and naughty, and I in turn get more strict. So I decided that, as we kicked of summer, we needed a way to encourage more positive speak. I’d read an idea of putting warm fuzzies in a jar when children are caught being good. But I didn’t have any pom poms. What I did have was a bag of rainbow colored foam popsicle sticks. Cut in half, they created a very durable, easy to handle “ticket”. Sunday night, while I was waiting for Brian to see why the internet was out, I slapped some labels on an old gelato jar and a formula can. One for me, one for him. And now, I carry a pocket full of tickets. When I catch Patrick doing something especially kind of helpful, when he obeys when he doesn’t want to, when he gets control of his temper when he is feeling out of control, etc. he gets a ticket. They easily move from my pocket to his. And once or twice a day we empty his pocket into the jar. When the jar gets full, he earns a reward. At first, I was offering kids meals. Now, we’ve opened that up to a dollar at the dollar store, too, since we are filling the jar more than once a week.

Anyway – this has helped the mood in our house. It also gave us a great excuse for an outing.

Wednesday is “library day” in our house. So, once the cable was fixed Wednesday, with Patrick’s jar full, I decided we had earned an outing. I checked out museum passes for the month of June. I thought we’d start with what had been his least favorite museum before, the Leonardo. And then we could go over and visit the city library.

Well, it turns out that the exhibits at the Leonardo have changed a bit and Patrick has grown up a lot. He is a little bit of an engineer at heart, taking after his father and grandfathers in wanting to know how things work. And he couldn’t get enough of the hands-on engineering exhibits at the Leonardo. He wasn’t as much in love with the arts side of things. But, when I thought he’d seen it all and suggested we go, he announced, “No! I love to be here!” And we went and did them all again. We arrived at 3:30. We stayed till 5. That is a long time at one thing for Patrick.

When we left the museum, I considered moving my car, since it was in 2 hour parking.. but instead let Patrick lead up up the stairs on the outside of the library. You can climb to the roof of the Salt Lake City Library by a long circular set of stairs on the outside. Of course, Patrick did. And then, after playing on the roof, we rode downstairs in the glass-walled elevators to the children’s section. Patrick was enchanted.

The children’s section has a hole fort-like reading corner. We picked out books and went to read. Then Patrick needed a diaper and I remembered my car, now 10 minutes past time to move it. We went outside with the intention of moving the car.. but getting outside reminded us both we were hungry and Patrick voted to go to dinner.

He’d chosen Arby’s for dinner and a downtown location felt just fancy enough. I knew we needed to do some grocery shopping, too, and while we were eating I remembered that the downtown Smith’s location as a fairly large allergy section that I’d never explored. So we went grocery shopping. Patrick was beat! But they had goldfish crackers on sale. (We’re using them to give him small amounts of dairy exposure to try to help reduce that allergy… plus he loves them.) And, as I went looking for vegan mayo, I discovered a new product called “Just Ranch” that happened to be on clearance. It was an entirely vegan ranch dressing. And next to it was “Just Coleslaw Dressing,” though they were out of “Just Mayo.” We picked up a few, headed to the car, and made it home, snacking on goldfish while we drove, just on time to go to get by 8.

Friday, we tried to meet some support group friends at the park. I’d picked an adaptive playground I love because I find them easier not just for wheelchairs, but also for kiddos with TPN or tube feeds in tow. Alas, we ended up there alone. Short gut means hectic schedules and I often end up planning get togethers that only I attend. But we stayed to play, anyway. We’d made up some chicken salad with the Just Coleslaw dressing and Patrick devoured it. (Yay!) Being an adaptive playground means it was full of special needs kids and their special moms. So when the phone rang and it was Patrick’s summer school teacher calling to learn about him before the next week, some sweet special moms just took him in with their own so I could talk.

Saturday, we decided to try out another museum pass. This time to the Museum of Natural History. I’d opted to spend the morning working in the yard before it got too hot. And it was crowded in the afternoon, which made it harder for Patrick to focus. But we still spent a couple of happy hours and I think he got a chance to explore and play with everything that suits his abilities.

Sunday, we attempted a little more church than usual. Patrick did really well in Sacrament meeting. He set up his toys on the floor and happily entertained himself past our goal of the first talk. It took effort me to stick to my resolution to not overload him and leave once we’d met the goal.

We went home, ate lunch, and talked to Daddy.

That afternoon, I took Patrick back for Primary. His first attempt since transplant. He was tired by then. And overwhelmed by the new place. He said the opening prayer, except he didn’t. They’d whisper ideas of things he might say in his ear, and he’s just say “no.” But he got to talk in the microphone, which made him happy.

Then, he ran wild around the room for the remainder of singing time. (Different to go observe instead of leading.) And then I took him home.

I’ll write more about Monday. Maybe tomorrow. The short version is that he started school, I started working with a district representative to talk about his 1st grade placement, and then we went and brought Daddy home from the airport. That night, I cooked my first real (not restaurant, frozen, boxes or reheated) meal in 2 weeks. And we were all ready to crash by 9.

Mom’s Wish Trip Recap

I loved reading Brian’s retelling of the events of our wish trip. I’m so glad he was able to capture those memories and share them with you.

It is very strange to come home and be right back to normal life. Life where things are too busy to spend time telling the stories of the Wish Trip that I wish I had time to tell. I’m looking forward to our star-raising party for just that opportunity. But for now, I’m gonna grab a moment and tell you what I wish I could tell you face-to-face.

I wish I could tell you how different it was to travel with everything planned out and taken care of for us. We travel a lot. But this time, someone else made sure that we had what we needed, that we knew were we were going, that we always had a chance to be fed. Give Kids the World does exactly what it’s name says. But what the name doesn’t say is that they wrap up tired, worn-down parents in their arms and do all they can to lighten their load and make them feel special, too.

And they give you the best gift in the world in giving you a chance to witness joy on the face of your child over and over again. That gift is so precious, especially to parents who have seen their children’s faces filled with pain and worry and fear many more times than is fair to any child.

Every night, after giving Patrick his melatonin and tucking him into bed, I’d lay next to him while he fell asleep. Every day, he’d relive the excitement of the day. We’d relive rides and retell the conversations had with the characters we met. One very special evening, after meeting Spiderman, Patrick and I had a good 20 minute heart-to-heart about what superpowers are and what amazing thing each superhero can do. Describing “web-slinging” to Patrick and seeing him overflowing with excitement at the idea… Yes, that is one of the precious moments I hope I never forget.

I could tell you how amazing it was to receive the same magic treatment at each theme park, too.  We didn’t go in assuming anything was owed to us. A quick jump to the front of the lines seemed like more than enough special treatment. But most places we went, they went above and beyond that. We were told not to expect to skip lines for characters, and yet when Patrick wanted nothing more than to meet Donald our first day in the Magic Kingdom, there were the Disney Castmembers showing us through the back entrance right to Patrick’s favorite character. Or the morning we decided to pop in and see if there were any cancelled reservations at the month-long-wait-list Beast’s Castle restaurant and they handed us a piece of paper and told us to go right in.. At SeaWorld we were told we’d need to buy a tray of fish for me, but when we tried to do so we were informed that we were their “guests” today and not only did we get that extra tray of fish, but a trainer who commanded the dolphin to jump right up so Patrick could touch it. And in Universal Studios they were determined to add to our experience. Not only did we get to turn around and ride the same ride again when Patrick wanted more, and were given special meet and greet opportunities after the animal show… But if someone met us and didn’t know anything more they could do for us, they’d make sure to give us a hint about some way to sneak in a little more.. like where to sit on the parade route for an uncrowded extra-long show by the cast of Dora.

And speaking of Dora the Explorer… in order to meet both Captain America and Dora and Boots, we virtually ran in our parkhopping and, if the Fitbit was right, covered a couple of miles in that hour. But it was well worth it to see the look on Patrick’s face when Boots walked out in front of him. And to see him flexing his muscles with his favorite superhero, too?  Yeah, sometimes we parents do crazy things for our kids.

Like spending every day for a week out walking miles (about 10 a day) in the crazy mix of hot humidity and afternoon thunderstorms that is Florida’s daily weather. I don’t think a Utahn can properly prepare themselves for that kind of humidity. But, why didn’t anyone warn me that we’d need ponchos? And a game plan for when lightning closed everything. I don’t see myself moving to Florida anytime soon.

We were amazed that Patrick stayed healthy. Our second day, we were afraid that wasn’t going to hold. He had a cold when we left our house and as we went to lunch at Universal Studios, he got really grumpy and started rubbing his ears. We were contemplating which nurses we could call back home and whether or not the first aid station would be able to help him. Thankfully, after his nap, his ear seemed better. He stayed healthy. I caught his cold, instead.

Brian didn’t tell you much about the last days of our trip.

We left Give Kids the World on Saturday morning. Brian drove to the airport to trade in our rental car. (Make a Wish only rented our car for the length of our wish trip, so we needed a different car for the days that we extended to visit family.) Meanwhile, Patrick and I stayed behind to pack up the room and give Patrick one last chance to play on the Candyland playground.

Leaving the village was bittersweet. We visited to see Patrick’s star on the ceiling of the castle and snuck into the Amberville station (train station/arcade) to play with the remote control boats before leaving. (When Brian first saw them, he said it’d always been a dream to play with something like them. Moms and dads can have wishes granted too, right?) Give Kids the World will always hold a special spot in my heart. I think we’ll spend our lives looking for ways to give back.

It was so nice to go spend some time with Brian’s aunt and uncle. We were exhausted after a week in amusements parks. So to go and just sit, visit, play with toys, watch Women’s Conference on TV (The Church of Jesus Christ of Latter Day Saint’s boasts the largest women’s organization and the largest conference for women in the world), and just rest for a few days …that was heaven.

Sunday, we slept in, wore our pajamas till well past breakfast, and watched Dora the Explorer. Then we took a nap, went to church, and in the evening all of Brian’s cousins from the Florida area came for dinner.

Dinner was wonderful chaos with kids everywhere and food overflowing. Brian’s cousin taught Patrick to play duck-duck-goose.  He thought this was hilarious, except that instead of running for his spot in the circle, he’d just yell “Goose!” and run away! I couldn’t help wishing that this family didn’t live so far away. He was just so at home with them.

Monday morning, we packed up once more. Patrick’s gift haul filled an entire large duffle bag by itself. We put on our matching Minion t-shirts and then went to Silver Springs for a glass-bottomed boat tour. It was a lot of fun, even if we didn’t see any gators or monkeys. Patrick, however, didn’t know what to do when that was the only ride planned for the day.

We drove back to Orlando and grabbed lunch at Giordano’s Pizza.. a favorite restaurant of mine from my days in Chicago and not found anywhere outside Illinois.. except in Orlando. Mmm. Deep dish pizza!

It was starting to rain again as we arrived at the airport. We thought we were in the clear when they let us board the plane, but then lightning started again. We waited an hour before finally being able to take off. Amazingly, Patrick handled this pretty well. Thank goodness for the tablet.

It was late when we made it home. The air had that perfect Utah fall chill in it. Thank goodness for that. It helped ease the transition back home. Because face it, as good as home is.. nothing compares to a wish trip. We were glad to be back to normal, but very, very sorry to see it go. This is the kind of experience that just changes you. You want to tell everyone about it.. but there just isn’t time to put it all in words.

Patrick talked about nothing but his trip for most of the next week. At least, until his favorite friend at school fell and had to get stitches in her head. His head’s now full of friends and school, which is also wonderful. But we talk about his trip still a little every day.

Here are some pictures taken of us by Give Kids the World and Disney.

 

My little photographer

This weekend, we took a short family getaway. My smart husband saw a deal on a cabin in the woods right as he went to leave for the Ukraine a couple of months ago. (You know, before everything hit the fan) and tasked me to pick a weekend.

IMG_5587

Little did I know when I booked that the Uinta Mountains would be hit with an unseasonably early snowfall. Still, we trusted in the warm cabin, and packed and went.

Getting there was a bit crazy, as we squeezed in an eye exam and speech therapy before we left town. But the trip up was peaceful, despite falling snow. We met one of our favorite Short Gut families for dinner on our way through Evanston, Wyoming and then arrived and settled into our cabin just on time for bedtime.

It was so peaceful to sit by the fire, snuggled by my husband, watching the snow fall and the end of a football game. And then, well, the rest of the night wasn’t as peaceful. Patrick didn’t sleep well and was up early, early in the morning.

IMG_1186

The snow meant we had to cancel our plans to explore the mountains by ATV and we had to settle for a drive in the car instead. Still, despite the rough start to the day, we had a really nice day out. The mix of autumn leaves and nearly a foot of snow made for stunning scenery. The free range cows preferring to move along roads to avoid snow broke up the drive. And we enjoyed some yummy pizza for lunch before heading back to the cabin. (They even made Patrick a crust-only pizza that, once convinced to try it, Patrick sat and ate for half an hour.)

IMG_5542

But for me, one of the highlights of the trip was Patrick discovering my camera. Brian loves photography and with the amazing fall/winter scene, we stopped to take pictures along the way. To keep Patrick entertained in the car, I offered him my camera when we stopped. Before long, I was following along behind him as he sought out the perfect picture. (Just like his Daddy.) It made his day and I find it quite entertaining to see the world from his point of view.

IMG_5563

I hope you enjoy his work, too. (The rest of the pictures in this post were taken by Patrick).

Looking out the car window
Looking out the car window
There is a whole series of pictures of Patrick's feet when he didn't realize the camera was turned around
There is a whole series of pictures of Patrick’s feet when he didn’t realize the camera was turned around
Provo River Falls
Provo River Falls

 

Mommy
Mommy
Looking up at the trees
Looking up at the trees
Daddy taking pictures at Provo River Falls
Daddy taking pictures at Provo River Falls
"Green"
“Green”
Mommy (with some help from daddy to get Mommy in the frame)
Mommy (with some help from daddy to get Mommy in the frame)
View from our cabin window
View from our cabin window
A selfie
A selfie
The time out chair
The time out chair

Trees behind our cabin

Trees behind our cabin

How the Hoopes Family does bedrest

In addition to the 3 hours of totally immobilized bedrest, Patrick’s doctor ordered that he stick to light activity for the next couple of days just to be sure that none of the little holes they put into major veins started bleeding. Patrick does not do bedrest.

So instead, this is what we did to keep him as still as possible.

Nebraska State Capital
Nebraska State Capital

IMG_1081

First, we went out to breakfast. Then, we got in our car and we drove, taking the longest scenic route Google maps would provide, to Lincoln, Nebraska, the state capital. We stopped and walked around the capital building.

And then we visited the Lincoln Children’s Zoo, which is, in essence a big petting zoo.

He showed us his best frog face.
He showed us his best frog face.
He experienced a hedgehog's quills.
He experienced a hedgehog’s quills.
He petted a cow.
He petted a cow.
Patrick got to ride a pony named Tinkerbell.
Patrick got to ride a pony named Tinkerbell.

We also fed goats, petted a llama, watched the penguins feeding, rode the zoo train, shared snacks with a peacock, and of course, fed ice cream cones filled with feed to camels.

IMG_1119

This is the wrong way to feed a camel an ice cream cone. Brian is pouring feed down the little pipe holder they gave him. The camel didn't mind much.
Put an ice cream cone on a pipe, hold it out, and the camel grabs it.

Then, we drove back taking the fastest route we could find so Patrick wouldn’t fall asleep in the car. And when we got back to the Ronald McDonald House, we snuggled down and napped until dinner time.

When we woke up, Patrick took advantage of the first break from tubes he’d been allowed in a week and played on the house playground. He didn’t mind that it was almost 100 degrees and over 80% humidity.

IMG_1121

And then we went for a stroll on the riverwalk.

IMG_1123

Not a bad day of recovery by any account. The next day we spent flying home. Booking last minute meant having to book Patrick’s first layover. A shame because he squeezed in his nap on the short flight and was exhausted and overstimulated through the second. But we finally made it home safe and sound Sunday evening.

 

 

 

Seattle Checkup and a Miraculous Anniversary


Not sure what we were thinking, but 3 days after returning from Yellowstone, we headed up to Seattle. It was time again for Patrick’s quarterly checkup and we decided to keep the vacation going by taking a few extra days and going as a family.

We arrived the day before our appointment and spent the afternoon and evening with our good friends. Lindy, her husband Kelly, and their daughter Lauren live north of Seattle and are kind enough to let us crash their home for these regular checkups. Lauren’s just a few months younger than Patrick and is one of his very favorite friends to play with.

Patrick’s appointment was Thursday afternoon. So, after making a stop for Mighty-O doughnuts (a special treat one of Patrick’s nurses introduced us to), we headed up to Seattle Children’s.

Every visit, they send us a detailed itinerary with individual appointments with his transplant coordinator, dietician, and doctor. But the reality is that they all come into the room at once to see Patrick. His dietician appeared first and couldn’t wait to show me his growth chart. While most kids’ chart shows a nice even curve that tapers off as they get older, Patrick’s has been taking a steep vertical climb lately. He’s in the 50th percentile for weight right now.. However, because he’s only around the 10th percentile for height, this means that he was at about 104% of his target weight. As the team gathered, they couldn’t help commenting on how nice it was to see chunky little legs.

Dr. Horslen, Patrick’s GI, seemed quite happy with how Patrick is doing overall. We talked what Patrick’s eating, how his stomach had been upset by travelling, and some of the strategies being used to prevent infections. Then, after examining Patrick, Dr. Horslen said that he didn’t see a reason for Patrick to need to be seen again as soon. Instead of 3 months, they suggested that we come back in 6. The team in Salt Lake has been doing a great job caring for Patrick and they are happy letting them continue to do so until the transplant comes.

Hearing an enthusiastic clean bill of health (well, except for the Short Gut and obvious problems that come with day to day living) was a special treat on that day. See, July 15th was more than just the day of Patrick’s appointment to me. It was the one-year anniversary of the worst day of my life.. the day of Patrick’s cardiac arrest.

When I look at Patrick now and compare it to what the doctors were telling us was the projected outcome of such a traumatic event I can’t help by say that I believe in miracles. One year before I was watching doctors work frantically and feeling uncertain of what the future could hold. Now, he was full of energy crawling around the doctor’s office, impossible to contain, showing off and flirting as only Patrick can.

After the appointment, we made a quick stop at the Ronald McDonald house to try to get a vision of where it is Patrick and I will be living during his recovery. Patrick LOVED sitting on Ronald’s lap, and especially, for some reason, honking Ronald’s nose. The house is different than I’d imagined, but kind of felt like it could be home for a while.

We decided that dinner that night needed to be something special. Brian suggested a picnic and Lindy and Kelly told us about a place called Carkeek Park in the city.

So, after a short detour chasing down a lost delivery of TPN, we headed into Seattle. We stopped at Pagliacci’s for pizza, then the Laylands guided us to a road where city suddenly turned to beautiful forest that then opened up to a beautiful view of the sound.

We ate dinner, then let the kids play on a little playground in the park. Lauren tried to teach Patrick to climb up the slides.. but in the end, he decided he was a much bigger fan of a giant teeter totter.

Then, we took a bridge with stairs that led us down the bluff and onto the beach.

This was the first time Patrick’s been to a beach and I wasn’t sure what he’d think of it. At first, he wasn’t so certain.. But soon he discovered the joy of walking and stomping in the sand.

Before long, he was cheering out loud! Then we sat for a while and watched Lauren, Brian and Kelly throw rocks in the water.

Finally, we decided it was past bedtime and we’d better head back. But to leave, we had to carry Patrick out. He wouldn’t take more than 3 steps without stopping to cheer.

Friday morning, Brian went in to his company’s offices in Seattle for a few hours. That left Lindy, the kids and I to play. We decided to go back to the beach because Patrick loved it so much. This time, we went to a beach about 10 minutes from the Lindy’s house.

Since I hadn’t planned on beach trips, I dressed Patrick in the only clothes I could come up with for the job. For shoes, he borrowed a bright purple pair of Crocs from Lauren. The result was quite the fashion statement.

It was a cold morning, though. Even beach savvy Lauren didn’t want to throw rocks in the water. I took Patrick down to watch the waves but decided it was a bad time to get wet. So I took his hands and went to lead him up the beach. He surprised me, though. He turned around and headed back to the water and stood where the waves would just lap onto his toes. Once he knew that was safe, he crept forward until the water came up to his ankles. Then he stood there until the cold water had him shivering all over.  The only pictures I got there he looks miserable because he was already chilled to the bone. But at least now we can say Patrick’s stood in the surf.

I was grateful for an Ivar’s stand on the way back where we could get some clam chowder to warm us up. Patrick was just grateful for his carseat. He fell asleep immediately and both he and Lauren slept 3 hours.

We went to a japanese steakhouse for dinner. It was a first for everyone but Brian and myself. Most loved the show, but once Patrick saw fire come from the onion and oil volcano, he was pretty nervous about the rest. He was a fan of the chopsticks they gave him to play with, though.. That was our saving grace.

And then, like all good things, our vacation had to come to an end. We flew home Saturday. Patrick showed his true daredevil character on landing. Because of the heat in Salt Lake, the landing was a bit rougher than usual. The girl sitting next to me almost turned green. Then, as we touched down, I looked at Patrick. He was grinning from ear to ear and chuckling. The smile didn’t leave his face until we’d reached the gate. He LOVED the bumps. My little thrill seeker!

I don’t know anyone who loves life as much as Patrick does. Perhaps because so early on he had to fight to keep it. What a miracle it is to share his life with him.

Attempting a vacation… Line by line

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

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

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

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

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

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

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

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

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

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

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

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

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

Or so I thought.

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

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

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

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

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

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

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

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

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

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

The repair held well and is still holding.

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

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

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

http://www.facebook.com/v/1424011274297

Transplant Pre-evaluation: Night 3 & Days 4 & 5

Boy I didn’t mean to leave you all in a cliffhanger there. May turned out to be a rough month for us. Patrick was hospitalized twice with fevers and Brian & I have been sick, too… Blogging is one of the first things to go when things get hectic in our family. I’ll blog more about our first experiences inpatient at Primary Children’s… But I left you all hanging with the story of our first inpatient experience at Seattle Children’s.

So here goes…After Patrick’s GI sprung on us the idea of admitting him to the hospital for labwork and a transfusion, we made a few calls to make sure it was approved by the insurance company, and then the transplant coordinator took us to the admitting desk.

We traded in our clinic “Parent” badges for inpatient badges on lanyards that allowed us to wander around the hospital anytime day or night. Someone from admitting met us and led us over to what would be our room for the night. A nurse came in and started to take Patrick’s history. When I handed her my printed medical fact sheet, we got instant brownie points. She took the first vitals and got us settled in the room, but then her shift ended. This is the problem we’ve witnessed a few times… Things move slower if you arrive at shift change because there’s so much else going on.Around 7:30 things finally started to progress. Because we hadn’t been planning on spending the night, there were a few medical procedures that we would have done in the hotel room that we found ourselves having to ask permission for, and even supplies for… But they finally got it all done. We met the doctor and made a tentative plan for labs to be drawn once the blood for the transfusion had arrived. The IV nurse came and took some labs for blood typing and left a peripheral IV in Patrick’s foot that they’d be able to give the transfusion through.

Around 9 things finally settled down enough for us to order some Chinese takeout. (The only restaurant open that would still deliver to the hospital at that time of night)… and after it arrived, Howie went back to the hotel room and brought back the things we’d need for the night.Our room was in the surgical unit and was really quite nice. It was a shared room but Patrick was the only patient overnight. It had a nice couch that folded down into a bed, a bathroom in the room, and a window with a pretty nice view. When it wasn’t cloudy, you could see the space needle.

Things went pretty smoothly overnight. Patrick had a really great nurse who was impressively quiet. I woke up when the blood arrived for the transfusion so that I could take care of the TPN (they allowed us to run our home pumps, providing we were always available to operate them).

The next morning they wanted to do a floroscope (contrast X-ray) of his intestines. This was to be done in two parts so they could see the top and the bottom separately. They showed up early for the first one and took us to radiology where they took a chest x-ray and then strapped him to a board on the floroscope table. The board restrained his arms, legs, and head and also allowed the radiologist to tip and turn him.Patrick didn’t like this at all, but they let Brian and I be close to comfort him (Brian was actually in charge of protecting his head when they turned the board) and Patrick eventually fell asleep during the test

.
They put a contrast solution in through his g-tube and took images showing it move through the stomach and out his stoma. It was interesting to watch it move through and appear on the screen.Then we were supposed to wait and see how long it took for the contrast to clear so they could see his large intestine without the small.

I was sleepy, hungry (they showed up before I could get breakfast) and frustrated at my plans for a mini-vacation being postponed. When the radiologist hinted that they might keep Patrick another night for the next floroscope to be done, that pushed me over the edge a bit… So Brian sent me to get breakfast straight from radiology and went with Patrick back to the room.

When I got back, he informed me that we’d missed rounds… fortunately we didn’t miss his GI, who came in just a few minutes after I did. He promised that they wouldn’t keep us another night, did a quick exam of Patrick, and then left.

Brian had a business lunch he’d scheduled so I stayed in the room and tried to get some sleep… Unfortunately, we got a roommate whose alarms were going off regularly and that was a mostly vain effort. The rest of the day was waiting and more waiting to see if the contrast would clear out of Patrick’s system… When it still hadn’t by 3 p.m. they finally started to work on a discharge plan. We’d come back outpatient the next day for the next test before our flight.

We finally made it out of there sometime in the late afternoon and snuck a nap in before finally getting out to play a bit.

Our friends Lindy & Kelly took us out for some authentic Italian pizza and then for Seattle’s famous Royal cupcakes. It was good to get to visit and spend some time with them. I was impressed by Lindy’s cunning as she excused herself to go to the bathroom and really went and paid both halves of the bill.

Our last morning in Seattle we got up and went to the hospital for the last time. The radiology tech from the day before was there yet again and very excited to see our names on the schedule. I asked if we could take pictures of Patrick on the table for this test and before you knew it, they’d convinced us to pose for this picture, which seems so wrong to be smiling in, but gives you an idea of what room, equipment, and our lovely lead vests were like.

Turned out to be really good we were there because I’d seen previous tests and knew that what first appeared on the screen was not the full length of large intestine and could encourage the radiologist to inject more contrast until we saw the rest. Because this organ isn’t used, it is rather narrow.
We made it away with just enough time to meet Lindy and Lauren and enjoy a nice walk in the park and a delightful lunch before rushing off to catch our plane. Obviously, it wore the kids out.
Security in Seattle didn’t go quite as smoothly as Salt Lake… I think this is because the first person who I was able to tell about Patrick’s pumps was the security agent at the metal detector who I think mistook the backpack with tubes coming out as something scary. We quickly got things sorted out, though, and they didn’t have other problems with the extra search.Patrick and his daddy slept through pretty much the entire flight and we got home without incident… But with very full mind from everything we’d learned and a much better sense of just what a big deal this all really is.

If I can manage a few more days of health in this house, I’ll post a bit more about how much this one little trip and the plan for transplant affects and will continue to affect our little family.

Transplant Pre-evaluation: Day 1


So the first big question about getting Patrick to Seattle was transportation. With current airport security, how do you get a kid who is connected to running IV fluids through security? And how do you go about transporting a week’s supply of TPN? It has to be kept at a certain temperature and, well, there is just a lot of it. Hauling a cooler and coordinating tubing through the airport just didn’t sound like much fun to us, but neither did dealing with any lost luggage.

So I did tons of research: called the TSA, read every page in the Delta website about baggage, and read websites written by other TPN patients. Finally, I asked the pharmacy if they could ship the TPN ahead of us. Turns out, that’s a free service that they provide. And our wonderful friends Lindy & Kelly helped us find a place in Seattle to ship to and then picked up the shipment and kept it in their fridge until we could get there.

So we were able to travel with just 2 day’s worth of medical supplies in our carryon… which was still enough to fill an entire carry-on sized suitcase, but probably saved us TONS of grief. Patrick’s luggage was by far the biggest and we were probably quite the sight making our way around with Howie hauling 3 rolling suitcases behind him and his carry-on and me with a stroller, a duffel bag, and a diaper bag.

We were surprised by how smoothly things went at security. In Salt Lake a TSA worker came up to us when she saw us getting our stuff ready to go through X-ray. I explained to her Patrick’s IV’s and showed her my suitcase full of medical equipment, including IV solutions and syringes full of saline and heparin. She took over right away. Patrick and I went through the metal detector and (of course) set it off because of his pumps. Then they took us to the little security station and ran their little tests on his medicines. When they were all done, they patted Patrick down and then did a wand/hand search of me. Then they thanked us for keeping things organized and making them easy and sent us on our way.

We were allowed to board the plane first because we were travelling with an infant, which was different but nice, especially since we needed to get his stuff settled so we could get to anything he needed during the flight.

We booked him a seat, not to sit in, but to give us some extra space. His backpack rode there buckled in and Patrick started the flight in his daddy’s arms. He played and he slept and he flashed his bright eyes and smile at the flight attendants and the passengers around us. He was by far the best behaved child on the flight! Whimpered only when he was hungry.

Finally we landed and took our crazy little caravan to the rental car company and checked in at our hotel. We took a much needed nap before heading over to visit Kelly and pick up the TPN shipment.

The day of travel was much smoother than I could have ever expected! Which turns out to be a good thing, as we had a very long week ahead of us