Tag Archives: vacation

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.

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

Yellowstone!!

I can’t believe it! We actually made it to Yellowstone this year! Those of you who know where we were last year when we’d planned a trip to Yellowstone can maybe understand how monumental this is.

The trip up didn’t go without incident. (See the blog entry at this link for detailshttp://www.cotaforpatrickh.com/node/1001), but we arrived in West Yellowstone Thursday afternoon unscathed, despite an extra 2 hours sitting in traffic.

Because we arrived a bit late, we didn’t have time to go into the park the first day. So, we wandered around West a bit. First we had lunch at a little cafe we discovered in winter a few years ago. It’s a small place with a very local, small-town feel. We were so surprised when we told the waitress Patrick was waiting for an intestinal transplant and she told us the owner’s daughter, age 30, was listed for one, too. That, plus Patrick’s usual flirtatious play, won her over quickly.

After lunch, we shopped for souvenirs and took Patrick to play at the city park. Then, after doing Patrick’s daily TPN change, met the rest of Brian’s family at the playhouse.

Yup, Patrick went to his first play. It was Disney’s Beauty and the Beast put on in a tiny little room that seated maybe 100 people. The cast was also ushers and consession sales. Patrick did really well, I think. He watched a lot of the play.. liked the songs.. but was nervous about the Beast. And, of course, he always gets jumpy when there’s applause involved.

After a dinner of buffalo burger and huckleberry ice cream, we turned it… It was nearly 11 by the time I got meds, fluids, and PJ’s all in order and got Patrick to stop tearing around the room and go to sleep.

The next morning, Friday, we actually made it into the park for a day of walking through geyser basins and looking for animals. (We spotted a baby black bear and a bald eagle, among other things.) Brian and his brother did and impressive job maneuvering a stroller around stairs and hills in the trail.

Patrick did well for the first half of the day, and was pacified well enough by looking at books and toys on the ride back.

After dinner, we decided to turn in early.. we were sunburned, sore and tired.

It’s a good thing, too.. because Saturday morning he was up and whimpering around 4:30 a.m. Finally, I gave in and pulled him out of his crib and into my bed…. only to remember why we don’t do this. He tosses and turns and about kicked us both out! Around 5:30 he decided it was awake, anyway, and we gave in and got up and packed.

We went to breakfast early at the same cafe where the waitress was thrilled to see him.
Then, we went into the park to see Old Faithful. Patrick surprised me by actually being interested in the geyser, though the pictures don’t show it.

We left about noon and Patrick and I slept at least half of the drive home. By the end, he was pretty tired of being in his carseat and pretty bored with the same selection of toys. Isn’t that part of a roadtrip, though?

What a great few days it was! It was nice to have finally made it.. and best of all, to Yellowstone, which is such a big part of the Hoopes family legacy. We’re so grateful we were able to share it with Patrick at long last!

I’m not feeling quite as superstitious anymore about saying the “V” word.

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