Category Archives: Make A Wish

Make-a-Wish anniversary and Star-raising ceremony

It’s been one year since Make-a-Wish Utah granted Patrick a trip to Disneyland. When I look back, in some ways it’s hard to believe a year has passed. But mostly, that seems like an eternity ago. So very much has changed in a year.

I’ll be honest. We have known for most of Patrick’s life that he was eligible for a wish. You don’t end up on a transplant list, really, unless your condition is considered otherwise terminal. But we were trying to put that off as long as possible. We wanted Patrick to understand that he was being given a wish. We wanted it to mean something. To not feel wasted on some passing childhood interest. And, more than anything, to be something he’d remember doing.

But two years ago, early in September, Patrick’s central line clotted, sprung a leak and was infected. They had to pull it, but then the surgeon couldn’t get a new one into place. We informed the transplant team of the difficulty. And they took his name off of the transplant list. Without a place for a central line above his heart, the transplant surgery would be impossible.

Patrick in recover after having a line placed in Omaha September 2013

Patrick in recover after having a line placed in Omaha September 2013

We’d known that scarred veins was a problem nutritionally. But we didn’t realize that it made the transplant surgery impossible. And we realized that we were at the end of a road.

The transplant team told us to get on a plane right away and we flew out to Omaha where some very brilliant and very brave doctors managed to get a new central line in place. But now we knew. We were that close to losing the only treatment option that didn’t end in Patrick eventually running out of good veins and starving to death.

And so – we made a palliative care and hospice plan. And we put in a request for Patrick to Make a Wish.

A year later, we headed to Orlando, Florida. That week was one of the most magical in our lives. We stayed at the amazing Give Kids the World Resort. We were given the royal treatment at Disneyworld and Universal Studios. We chased down characters for Patrick to meet. We rode roller coasters.

Checking in at Give Kids the World

Checking in at Give Kids the World

In the village, we celebrated off-season Halloween and Christmas, rode ponies, took carousel rides at almost every meal. We ate ice cream for breakfast. We ordered Patrick’s his first whole pizza. (Made entirely allergy safe and delivered to our door.) We raised a star in Patrick’s honor.

There is no way to describe in words what a wish trip is like. Honestly, other wishes sound cool. But the reason this one is so popular is that it is the ONLY thing like it.

Every child who is granted a wish by our chapter of Make-a-Wish raises a glass star to the ceiling of the Make-a-Wish building. Family and friends are invited for a special ceremony.

We never imagined that, before we’d be home long enough from our trip to schedule the star-raising ceremony. Yet, found myself on the phone with Patrick’s wish granters the day after his transplant telling them just that. We’d need to reschedule.

Because of recovery time and immune suppression, we actually didn’t get around to that star-raising party until just last month. The experience was kind of surreal.

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Patrick, one of his wish-granters, and his McQueen and Mater cake.

Being so much later, it was a bit nostalgic to be back in that building. They took Patrick’s guests on a tour of the building like the one we’d received when he made his wish. And then, they let him use his magic key to open the wishing room in their castle tower. We reenacted a bit for them what had happened as he made his wish.

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Decorating his star

When Patrick made his wish a year and a half ago, they invited grandparents and parents to make a wish on his behalf. Brian and I made what we felt were practical wishes.. For Patrick to live a happy and full life. (Knowing that it might be short.) Grandparents wished for Patrick to receive his transplant. And, honestly, I thought to myself, “I’m so sorry we’ve misled you. Patrick has waited too long. He’s been listed for most of his life. Almost a year and a half at the center that had promised a match before a year was over. It’s too late. That is why he is making this wish.”

And yet, last month there we were… standing in that same room. Patrick free from IV’s and most tube feeds. Having just gorged himself on McQueen cake. Transplant done. In essence, made whole.

I am a witness that prayers are answered. Miracles are real. Wishes come true.

Because we live in a mortal world where test and trial are necessary for our growth, that doesn’t mean that things are perfect. Perfection is something for the next life. But God’s power is very, very real.

We owe a great debt of gratitude to the wonderful people at Make-a-Wish for the unbelievable gift that they gave to us. To the angels at Give Kids the World to helped to make it come true.

Patrick decorated a glass star and then used a string and pulley to raise it to the ceiling. Fitting his style, they said he raised the start faster than any child they’ve ever seen. Almost not giving time to notice the lyrics to this song that they played. Almost. Which is good, because if you were listening it brought tears to your eyes.

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When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you.

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do.

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longing

Like a bolt out of the blue
Suddenly, it comes to you
When you wish upon a star
Your dreams come true

Outgrowing allergies and other updates

I reread what I wrote last night and realized that I got tired and stopped short of finishing telling you about our day. I didn’t tell you anything about speech therapy.

After being away for 9 months, we finally decided it was time to go back to speech therapy. We only just barely arrived on time, because we were coming from the meeting with the school. Thank goodness my sister had tagged along to help with Patrick or he would never have done so well.

But he DID do well. His therapist hasn’t seen him in a really long time and it was fun to see her reaction to his progress. Because speech is one place where Patrick’s progress is simply amazing. Being able to find car keys like a french pig finds truffles, Patrick found his therapist’s key on his therapist’s desk, brought it to her and asked “Do you drive a Volvo?” She laughed and said that he’d graduated speech therapy.

No, seriously though. He’s come a long way but is still struggling with things like pronunciation and verb tenses and sentence and word structure. She started doing some testing yesterday. It was amazing to see how far his receptive (listening) language has come. He flew through that test with all kinds of new words. Amazing how 9 months of netflix can expand your vocabulary.

The expressive language, though.. the one where he had to say what he saw in pictures. That wasn’t flying colors. And it kind of demonstrated what I have been seeing. Patrick knows words. But recalling them to say that, that is hard. It’s part of why he is always asking everyone their name.

We had a good talk about attention and ADHD and attention and steroids. His therapist said she has seen steroids really affect attention before. And that lack of attention causes trouble with memory. It all kind of fit. Not that I know what to do about it. But it fit.

So that was that. Now we just have to get insurance to agree to pay for speech therapy again.

In other big news, I got a call from Patrick’s allergist this morning. (After missing the appointment, they had him call me.) He went through the blood test and scratch test results pretty thoroughly.. figuring out what is safe to try and what wasn’t. He told me to be very careful with some newly diagnosed allergies: soy and tomato especially. And he also gave permission to try some cow’s milk with Patrick because all the tests indicate Patrick may have outgrown that allergy.

When I offered Patrick a piece of cow’s milk cheese, he was quite fearful. It took half an hour to convince him it was ok to take a small bite. He nibbled a couple more and then, after a few minutes when he saw he was still safe, he grabbed that piece of cheese and gobbled it down. No reaction. So, later in the day, I gave Patrick a piece of string cheese. He really loved that. He asked for another later on. And then he tried to get to eat only string cheese for dinner.

I nixed that plan but did try some pasta with cream of chicken soup in the recipe. Fail. He got spots on his face. No worse reaction. But too many ingredients. I can’t tell you if it was the dairy or the soy or something else. But we’ll need to be more careful before we try that again.

What a tricky balance. Introducing Patrick cautiously to foods to find out how he’ll react. And then, on the other hand, trying to make sure that he’s eating as many calories as possible.

We cut Patrick’s tube feeds in half last night. Now, he’s only getting about 200 calories over 4 hours. I think it will work. I think he can eat the target 1800-2000 calories easily. But not if I cook him dinner and discover I made him something unsafe. Tonight I ended up making a whole extra dinner for him. And yet, I still don’t think he ate his full calories.

if Patrick can maintain or gain weight, the goal is to switch to all oral food next month. Knock on wood. This wasn’t the greatest way to start today.

Today was kind of hard all around, though. And not just because my hot pad slipped and I burned my thumb cooking fish sticks. That just set me back.

But knowing that school had started. Seeing the school next door bustling with life. And everyone’s first day of school pictures on Facebook, and Patrick asking to play with friends who are no longer home. And then us.. just trying to find the right balance of work and entertainment to get us through yet another day at home. I’ve been doing this for almost 9 months now. I am exhausted. And it’s driving through the middle of nowhere and finally spotting a town and needing the restroom and then discovering that the restroom where you are is out of order and you’ll have to go across the street. Holding on those last moments when you thought you’d made it to the finish line, but the finish line moved. It’s hard.

I look around me and I see so many things that have been just waiting. Waiting for me to have time and free hands. But that’s not the time right now for me. And with needing to be a part of training, it might not even really happen for a while.

At least the day ended well. Patrick raised his start to the ceiling of the Make-a-Wish building tonight. Family and friends came. We took a tour and we ate some cake and we visited. Patrick was exhausted and crazed.

But it was a moving moment to see his star go up with the others after all. Even if he did do the fastest ever.

I’d add pictures but they are on Brian’s phone and my battery is dying so I’m going to post now.

 

Transplant Day 149 and how liver enzymes meant a weekend in the hospital

Hello from “The Hotel on the Hill.” If you are new to our blog, this is the nickname for Primary Children’s Hospital which is situated in the foothills of the Wasatch mountains on the edge of the Salt Lake Valley.

We have been here since yesterday afternoon. Here’s why.

A few weeks ago, Patrick’s nurse checked his temperature when he came to draw his morning labwork and it was a little high. Later that day, his labwork showed elevated liver enzymes and a slightly higher white count. These two signs together usually mean an illness and we thought that maybe Patrick had a bit of a stomach bug. The numbers stayed high for a couple of days, then went back down. We called Nebraska Medicine and they said they would check some viral studies to see if something was brewing. No one seemed too concerned.

For the past several weeks, this pattern has repeated itself. Once or twice a week, Patrick’s temperature has gone up. His liver enzymes go up. Sometimes his white count goes up. Sometimes it doesn’t. And Patrick never got sick. And no one ever seemed really worried.

Well, this Tuesday, when they checked Patrick’s labs, his liver enzymes were up by almost 100 points. His white count was normal this time. His temperature was 99.7. He was acting fine. But they also finally got around to those viral studies which showed no concern for the viruses they suspected might be to blame. Also, Patrick’s prograf level was a touch high and the transplant team decided to drop his dose by half.

I texted Patrick’s local doctor, Dr. Jackson, to let him know about the change and that night he called me.  He suggested that the one other thing we hadn’t checked for was infection in Patrick’s central line.. maybe some small amount of bacteria seeded there. So the next morning Patrick’s home nurse came by and drew cultures and repeated liver enzymes and prograf levels. The liver tests came back pretty early. The enzymes that had been high were the same, but another marker was now up, too.  And Saturday morning, as we were getting ready for the day, we got a call from the GI fellow on call who said that Patrick had tested positive for a line infection.

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Well, Patrick was still feeling fine. So we asked if we could still take him to the Make-a-Wish easter egg hunt we had gotten him up early for. Then I called Dr. Jackson to figure out how exactly to proceed. We talked about starting treatment at home, but Patrick needed some vancomycin.. a drug we have a love/hate relationship with because it clears infections, but Patrick’s pretty allergic to. It gives him a rash, so he has to have benadryl. It also makes his belly quite sick and we didn’t know how a new gut would take it.

So, we made a plan to bring Patrick inpatient for the weekend while we start antibiotics and figure out what comes next.

Because he is still so soon after transplant, we are making our first stay in the cancer/transplant unit, or immune compromised unit. (ICS). At first, I was worried they might kick us out after we went through all the work to make an infection-risk-minimal admission. They don’t accept transplant patients after the initial immune suppression and they didn’t know us and thought maybe someone was sneaking us in. But once they heard “5 months since transplant” it was ok.

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They are experts with central lines here, which is nice. They don’t do g-tubes or ethanol locks often, though. Apparently only short gut and related GI diagnoses get the full gammut like we do. So there’s still some teaching to do.

The nice thing is that they keep the rooms super duper clean and, really, the nursing staff here is in general a little more experienced.  The techs are really on the ball making sure things are cleaned up, diapers charted, extra food collected, teeth brushes, baths given, etc. There are things in this unit that I would have killed for in Nebraska. Like washing machines down the hall. (Last night Patrick had a diaper leak and they just showed me to the washing machines so I could clean it up.) And bathtubs. Patrick was very excited to take a bath here this morning. And needleless hubs with scrub caps and a policy of scrubbing the hub for a full 15 seconds and then letting it dry.

The room is smaller, but these rooms feel like home. And the parent bed is comfy. And the view is spectacular. And the cafeteria is just downstairs and still serves most of our comfort foods, even though they’ve just remodeled.

So it’s different, but it’s home.

This has been a very long week. We are all very tired. Monday night, my cell phone rebooted and wouldn’t load its operating system afterwards. Brian plugged away at it every chance he got, but there was no fixing the problem. So I had a few panicked days where I could see abnormal labs but couldn’t text as I normally do to communicate with Patrick’s medical team. Thankfully, Google has amazing customer service and pulled off a warranty exchange before Friday.

Tuesday night, I started to get an ache at the back of my throat. I hoped it was allergies, but was pretty sure it was a cold. I woke up sure I was sick. So I masked and gloved up, stripped and washed all my bedding, did as much laundry as possible, clorox wiped everything in sight and just tried to muddle through with as little exposure to Patrick as possible. It took round the clock mask-wearing, lots of handwashing, lots of running outside or to another room to sneeze or cough of blow my nose, and lots of picnic lunches (so I could eat without breathing near him) to get through the week. Thank goodness family was in town visiting. Two nights in a row, Brian took Patrick to dinner with his family, leaving me home to rest, clean, eat, and breathe mask-free.

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I was still sick and masked yesterday when we came up here. I was almost afraid they wouldnt’ let us into this unit with me sick… but I’m following the same precautions the rest of the staff here does so it turns out it was ok.

Thank goodness I am better today, though. My ears are so tender from wearing a mask all day and night that I can barely stand to wear my glasses and putting a mask on this morning to walk Patrick to the playroom almost made me cry.

It hasn’t been a better week for Brian, either. Coming home from work and taking Patrick away immediately is not easy for him. And he has some some busy weeks, preparing for some organizational changes heading his way.

So we were beyond grateful yesterday morning when Patrick’s doctor asked if we’d like to wait and come into the hospital at 1:00. We had promised and easter egg hunt and we had a great time. Make a Wish throws a great party and no one looks twice at you wearing masks and gloves and not eating any candy. Patrick was so very excited to meet the Easter Bunny. We got his face painted. We had a great time in line with the clown making balloon animals. (Have I mentioned Patrick loves clowns?)  The egg hunt was only mildly interesting to him. He gets tired walking still and so running around hunting eggs wasn’t the most exciting idea.

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The eggs were filled with candy and Patrick was a bit disappointed. But we knew we were headed to the hospital and were feeling generous and Brian had a coupon. So, we offered to let Patrick trade his candy for a prize and we headed to the Disney store.

We talked briefly about heading home and doing our chores but opted for some family fun time instead. We started at the Disney store where Patrick picked out a Mickey Mouse train set. Then we went to a built-to-order pizza restaurant and let Patrick design a cheeseless pizza. He loved it and scarfed it down and packed up his leftovers to go.

We left the mall and went for a walk around Temple Square. If you’ve never seen the gardens at Temple Square around the time of LDS conference you should, Especially in spring. They are amazing! Tulips and fountains and pansies and flowering trees raining white petals everywhere.
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Patrick did what all little boys do… walked the borders of every fountain and ran away and climbed up into the bronze statues.

And then, it was time to come up to the hospital.

And it was strange being admitted to a new place that is different but familiar. We had an ok night. Patrick didn’t nap on schedule. Not a surprise. But after they gave him benadryl at 5, his eyelids got droopy.

I turned on a broadcast of the LDS Women’s Conference right after Brian left to go get things cleaned up and packed up at home. They started off with a video presentation of a song that Patrick knows from church, The Family is of God. View the video here. Knowing he loves these things, I pulled him up on my lap to watch. He snuggled right down and his eyelids started to droop. The song ended and I told him to stay cuddled and I’d get him a show on his tablet. Well, his tablet was slow and before I had a show loaded, he was asleep. He slept on my lap for 2 hours. I got to bask in a quiet evening of gospel and sisterhood and uplifting messages about the importance of motherhood and womanhood and family. The entire conference is available to watch, read, or listen to here. Largest women’s conference in the world. Totally worthwhile and inspiring if you have time.

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And then, he woke up was very mellow the rest of the evening. We watched movies, played with syringes, cuddled on the bed. At 11, he seemed tired enough finally to sleep so I turned out the lights and he was out in 5 minutes. He slept all night except for diaper changes and woke up with the sun. (Much to my chagrin).

Rounds came early this morning. They said that he had immediately responded to antibiotics and his liver numbers were already trending down. No cultures have grown out, though, from the labs drawn right before antibiotics were started and we can’t quite explain it. The doctor suggested that another option for the off liver numbers being bacteria from Patrick’s gut gettiing into his liver through the gastric bypass created at transplant. I guess we’ll explore that more.

But the long story short is that Patrick seems to be responding well to treatment and shouldn’t be hospitalized long. And we’ll have more conversations about the cause of the problem and the fate of his line in the future.

It’s been a quiet Sunday. Patrick is so much calmer in the hospital now. I don’t know if that’s from practice being in the hospital and entertaining himself alone or because his sensory processing disorder is less of a problem since transplant or because his nurse last night started giving him all the used syringes and passed along in report to continue doing so and he has like 30 of them now, plus extensions to connect them to and that always keeps him happy. But he’s quiet and once we’d all had a nap we were all happier.

That was a lot of story to tell. I really should blog more often so you don’t have as much back story to read through. Oh well.

“Do you know deep in your heart that your Heavenly Father loves you and desires you and those you love to be with Him? Just as Heavenly Father and His Son, Jesus Christ are perfect, their hopes for us are perfect. Their plan for us is perfect, and Their promises are sure.” – Carole M Stephens, Relief Society General Presidency, LDS General Women’s Conference, October 2015

 

2014 Year in Review

Sometimes I’m a resilient, flexible hospital mom who is great at making hospital stays homey and fun. Other times, I struggle more, thinking of what we’re missing and feeling stretched beyond my limits making up the difference. Unfortunately, I’ve let myself fall into that the past couple of days. When Patrick didn’t nap on New Years’ Eve and I knew there was no way any of us was making it till midnight, I let it get to me. The limited staff, limited entertainment, limited food choices hospital environment just fed that feeling. And so sorry, I didn’t blog.

But today, I’m resolving to do better. And so I thought I’d pick up a previous New Year’s tradition. The 2014 year in review. (Counting blessings is a good way to fend off bad feelings.) So let’s look back at what 2014 meant for our family.

January – Patrick was in preschool. We were diving in trying to make a plan to solve the struggles he was having there. We started seeing a psychologist and had a meeting with the school staff to come up with a behavior plan.  I started to volunteer almost weekly in the classroom, which I really enjoyed as it was a chance for me to use all of my talents and training in the same place and get to share in and understand Patrick’s days. I also made some very good friends with the school staff that year.

February – Patrick caught a cold and ran a high fever that landed him in the hospital for several days. But after that he managed to stay healthy. Sometime between January and February one side of Patrick’s central line clotted and the transplant team opted not to replace it. We celebrated the 5th anniversary of day we were sealed as a forever family in the temple by going out to dinner at Brick Oven Pizza buffet, an odd choice for a kid who can’t eat cheese on his pizza, but Patrick was going through a breadstick phase and so we all enjoyed the meal. The we snuck over to walk the Jordan River temple grounds, the first time health and schedules allowed us to do so on our family forever day.

March – We started working with Palliative Care at Primary Children’s somewhere early in this year. It’s a team that specialized in keeping patients with chronic or terminal conditions comfortable and helping caregivers to plan ahead and then be able to make difficult choices as medical care gets more complex. One of their top priorities: get Patrick a wish. So, in March we started working with Make-a-Wish. We visited the Utah Headquarters and Patrick got to use his special key to enter the wishing room and send his key to the wishing wizard. Patrick wished to go to DisneyWorld. We made wishes, too. Several grandparents wished he’d receive his transplant. In the back of my mind I thought, “Yeah, but that may not happen in time.” My wish was that he get all he hoped out of life.

April – This spring, my baby sister decided to get married. And she asked if she could hold the wedding in our back yard. So most of April was spent whipping the yard into shape. We have never planted so many flowers, laid down so much mulch, fertilized so often. Brian had a busy month of work. Their development team from the Ukraine came to visit for a week. And then, not much later, he left to attend a conference in San Diego. I got a flyer about mommy and me classes at the YMCA and Patrick and I started attending. We were often the only family there, besides the teacher, but we really enjoyed the time together and made some very dear friends. We also decided that wedding was the perfect excuse to remodel our cramped, outdated, and slightly rotting kitchen. On Easter weekend, the kitchen was gutted.

May –   We turned the basement wet bar into a makeshift kitchen. I learned tricks with a rice maker and a crock pot and a microwave and a grill that I’d never learned before. Between the yard and the kitchen, we made so many trips to Home Depot that Google’s cell phone tracking on my phone decided I must work there. Patrick had to spend some time out of school sick and so we also spent a lot of time snuggling on the beanbag chair in the basement. At the end of May, Brian went to New York to attend a “hack day.” In other words, a programming competition of sorts.

June – Patrick graduated from preschool. Our kitchen was finished. The wedding came out better than I’d dreamed and we welcomed Tedd into the family. Patrick immediately fell in love with him. I’d taken such good care of my garden that I harvested lettuce and spinach successfully for the first time. I started summer Mommy School, a weekly home school curriculum. We also started attending “lunch park” at the elementary school next door with some encouragement from our friends at the YMCA. Patrick was allergic to most of the food served there, but the chance to go sit on the lawn and eat with the other kids in the neighborhood, to let him make some friends. That was priceless.

July – Brian bought a book of Utah hiking trails and we started spending as many weekends as possible hiking as a family. In the hard stretches, this meant Brian carrying Patrick on his shoulders while I huffed and puffed my overweight asthmatic self behind them. But it was wonderful to be out in the mountains together.  Patrick and I also frequented libraries and parks. I got free museum passes and we visited all the museums in Salt Lake City at least once.  We full-filled a lifelong wish for Patrick and bought him a ride on car that we spent the rest of the year following him around in. He also mastered riding a tricycle.

August – I talked to Patrick’s transplant team about scheduling his annual checkup since it would be a year since our last visit in September. Patrick’s clotted line had developed a hole and needed repaired so they decided it would be best to replace the line at this visit. Not wanting to interfere with school, I asked them to schedule us early and we headed out to Nebraska a couple of weeks later. They were able to replace Patrick’s line without problems. We opted to turn the trip into a family vacation and drove to Nauvoo, Illinois, a very important historic site for members of the Church of Jesus Christ of Latter-Day Saints. (The site of a very large early Mormon city.. the last they lived in before mobs forced them to move west to Utah.) I crossed an item off my bucket list. Patrick weathered well a nice long roadtrip across Iowa with the company of his imaginary friends, Daniel Tiger and Prince Wednesday.

The rest of August was a crazy busy. Brian spent a week in Georgia learning how to create android apps (and ziplining). Meanwhile, I made a mad scramble to get everything pulled together for Patrick to be ready to start school.

September – Patrick started kindergarten. Thanks to years of preschool and the extra cramming of summer mommy school, he started at level with his peers. He was blessed with amazing school staff who adapted their teaching to help him continue to progress. They also worked to teach his classmates to be accepting of him and, one step further, Patrick made several friends in his class. We started the month by taking Patrick camping for the first time, in a cabin. Unfortunately, a g-tube leak in the middle of the night led to an infection that landed him in the hospital and he had to miss the second week of school.  Patrick also had testing that confirmed all his same allergies. He started attending group therapy to work on social skills. And he became the proud owner of an adaptive stroller/wheelchair.

In mid-September, Make-a-Wish threw Patrick a surprise party to let him know his wish was finally being granted. They invited all of his friends and family and hired an ice cream truck. We left on our wish trip at the end of September.We stayed at Give Kids the World. They gave us tickets to Universal Studios and SeaWorld as well as DisneyWorld. We played from the moment we woke up till the moment we fell asleep. It was magical.

October – Because of district budget, Patrick got a new teacher at school. She was also amazing, too. To help the transition, and because it’s my dream job anyway, I got to start volunteering in the classroom at school. I was invited to attend a research planning conference in Washington DC in mid-october as a parent advocate to talk about how research could help solve the problem of lost central line access. It was the first I’ve left Patrick overnight (except when he was in the hospital.) It was strange but good to get out and be myself and a grown up for a few days. We attended some early halloween parties and I helped throw a halloween party in Patrick’s class.And then, on the 30th of October, we got a call that they had found a donor for Patrick. He received his transplant on his birthday, October 31st.

November – November was devoted to recovery. Patrick flew through the usual post-transplant obstacles. He made it out of the PICU and off of IV feeding in record time. However, right before Thanksgiving, that early progress backfired as his lymphatic system was leaky and he got a type of fat leaking around his lungs. He had to have an emergency chest tube as his lungs were collapsing. He was doing better until his stoma healed too tightly and had to be revised. But, with a change in formula and a quick revision surgery, he sailed through recovery again.

December – Brian had to go back to Utah to work and he spent the month trying to catch up work and to get Christmas ready. Meanwhile, Patrick was discharged from the hospital on December 8th. We moved into the Ronald McDonald House where we enjoyed a Christmas season full of gifts and cards from home and watching the generosity of others but without the bustle of other Christmas preparations. We learned a new medical care routine. We tried adjusting to the side effects of Patrick’s new medication. We made Christmas crafts with friends. Brian and I celebrated our 11th anniversary apart. But, a week later he came back and we celebrated together. We enjoyed a different but amazing Christmas where we were showered with love by friends and strangers.

And then, right at the end of December, Patrick’s stoma prolapsed and landed him back in the hospital. Offered the chance to take it down, we did. And therefore, we spent New Years’ Eve this year in the hospital. Patrick and I passed out in exhaustion right around 11 p.m. Brian waited up and rang in the new year.

 

Trying to change the world (SeaWorld that is)

IMG_1955This is not a transplant update. But it is a blog post that needed following up on for a while.

As you know, we went on our Make-a-Wish trip in September. You may or may not have noticed that we kind of glossed over writing about our visit to SeaWorld. The honest truth is that, other than the awesome dolphin encounter experience we had there, our trip to SeaWorld was not a good one.

Patrick was on a roller-coaster high after a week in theme parks and so he asked to ride more rides while we waited for the dolphin and whale shows. However, as we started to ride rides, we came across a funny thing.. the park staff seemed pretty uncertain about allowing Patrick’s TPN backpack on rides. They have a safety policy against “loose articles” on rides. We got a few ride operators to let him ride.. But when we got to the ride Patrick wanted most, the kiddie roller coaster, they wouldn’t let him on. Not unless he could leave his backpack behind.

This seems logical, right? Just take it off, ride, put it back on. Except that the risk of infection shutting off TPN is pretty significant. And suddenly shutting off TPN can cause hypoglycemic shock.

We asked for a supervisor. They supervisor also turned us away. We were pretty mad. I convinced Brian we could work it out. We went to guest services.. they were too busy for us. I saw a supervisor leaving Guest Services and chased him down. He also didn’t have a ready solution for us. He said he’d need to call for someone. So we told him we were going to go catch a dolphin show and come back.

During the dolphin show, a lightning storm rolled in and essentially shut down the park. We gave up. We left. (Now I’ll never see Shamu.)

But it didn’t sit right. Earlier this year, the Oley Foundation (a non-profit devoted to tube feeding) held their annual conference blocks from SeaWorld and I knew that many families had turned that into a mini vacation. So I asked if others had run into similar problems. Unfortunately, the answer was yes. Many had been turned away from the kid rides with because of their TPN and other medical equipment.

So I wrote to SeaWorld. And I wrote to them again. And I sent them messages through Facebook. And eventually, a few weeks later, a manager wrote back and fairly generic and non-promissory reply, expressing regret that I was frustrated my visit hadn’t gone as expected. He also invited me to visit him on my next visit to the park to discuss accommodations.

That evoked a kind of lengthy reply from me. Of course I wasn’t going back to SeaWorld in person to discuss the problem. But the delay in reply made me even more certain that something needed to be fixed.

So I wrote a nice long e-mail. I explained tube feeding and its unique challenges, quoted the American Disabilities Act, and appealed for a conversation about how to improve the park’s policies towards patients who have to carry medical backpacks. I made an appeal to help make a better experience for others, not to make things right for our family, but for those who come after us.

I wasn’t getting far with e-mails. I wanted the conversation in writing. They didn’t. They gave me a phone number to call and I kept putting it off, then things got busy. And I didn’t have time to call him back. Until today. Today I had a good talk with the manager of Shamu’s Happy Harbor at SeaWorld Orlando. I wish I could say that they had revoked their no loose articles policy for medical backpacks. That didn’t happen. They did, however, say that my e-mails had prompted some conversations about improving park accommodations for tube-fed patients and using some common sense on a case-by-case and ride-by-ride basis to determine where it is and is not safe to ride with tube feeds running.

So, for those perhaps considering a trip to SeaWorld Orlando with TPN, enteral feeds or other medical equipment, here are some of the things you probably want to know.

1) You should stop in first thing at Guest Services and ask for a ride accommodation pass. This may take some time. But they’ll go through ride by ride and help you figure out what you can ride and give you a pass identifying you as a safe rider.

2) If you encounter a ride operator who says you can’t ride when you feel it would be safe to do so, you should ask for a manager. Please note, a manager, NOT a supervisor. Only a manager has the authority to override park policies.

3) Be ready with a plan of how you can secure your backpack during the ride.

4) Know that training in this area of medical need has not been a standard thing for ride operators. We talked about that a little today and I was promised they would improve training.

5) Know that this isn’t going to get you on all the rides. So, if you really aren’t devoted to the rides, plan to enjoy the animal shows and other experiences so you won’t be disappointed.

This wasn’t the big policy change I hoped it would be. I think a lawsuit probably would have been the only way to really force that and, to be honest, that is not my style. I prefer the “let’s talk together and work this out” approach. I was pleased, however, to find that my efforts at education and advocacy weren’t completely wasted. The manager I spoke to told me that just that week he’d bent park rules to allow a wheelchair with oxygen attached onto a carousel where previously they would have been forbidden by the letter-of-the-law. So one heart at least was perhaps touched, and that will affect conversations and training.. and maybe with time and some patient teaching from future visitors will make a difference.

I’ll share what I learned with Give Kids the World and in the groups that I participate in. Maybe if we all work together with the positive expectation that SeaWorld will live up to these promises, they will get more used to offering accommodations and fewer people with have the kind of disappointing experience we had.

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.

 

Granting a wish.

Patrick has been learning about Disney World.  For a time when asked where he lived he said Disney World.  Patricks wish granters would send a package every once in a while to let him know that it was still happening.

A few months ago we got the dates for the trip.  There was a lot that needed to happen between then and the trip, so it got put off in our minds.  We had a trip to Omaha, I had a business trip, Patrick started Kindergarten, and we had an attempt at camping (gee most of those should be blog posts, I’ll see what I can do about that).  A few weeks ago we got a call from one of Patricks wish granters Beth, she told us that they were working on planning a wish granting party.  Something to tell Patrick that his wish had been granted, and he was on his way.

About a week ago we got details of his wish granting party.  And started inviting family, and close friends (sorry to those that didn’t get invited, the group was fairly large and we didn’t think it would be right to go larger, we still love and appreciate you).

We had coordinated the details with Beth.  We would send Patrick to the neighbors, the guests would come, and then we would surprise him, and then an ice cream truck would come as the cherry on top.

As with all things in our life, things change.  Emily started exploring some new therapy for Patrick yesterday.  They said great would it be possible to come tomorrow afternoon.  This caused our plans to change a bit.  The new plan was that I would come home early and meet everyone, help Beth and Natasha setup and then Emily and Patrick would arrive home from therapy to a group of friends.  With the contingency that if they got back too early they would play at the neighbors.

I got home from work early thinking I needed to help clean the house.  Cleaning the house with Patrick around is sometimes an effort in insanity.  When I arrived home Emily had the house in great shape.  I sat down and read for a while.  Then I decided to grab some chairs.

As I got outside Beth pulled up with balloons.  We tied balloons around our front yard.  Guests started arriving.  Natasha arrived with more balloons, which made things look all the more festive.

The majority of the guests arrived, and I texted Emily to let her know we were ready.

Patrick was taking in all his guests at his surprise wish granting party.

Patrick was taking in all his guests at his surprise wish granting party.

A few minutes later Emily pulled into the drive way.  Patrick looking out his window noticed we were all there, and started grinning.  Emily reports that Patrick saw everyone and yelled, “Hey! Why everyone here?” Then, grinning ear to ear and climbing out of his seat before we were even parked, “I want talk to them!”

Patrick got out of the car as fast as Emily could get his door open.  Ran to the driveway and just grinned.

He saw the present that was waiting for him on the porch and ran to it.  Beth cut him off, and presented him with a certificate stating that his wish was granted.  Then he resumed his quest for the gift.

He pulled all the things out of the gift bag, and around the corner comes music from and ice cream truck.  It stops at

"You are officially granted your wish"

“You are officially granted your wish”

our house and Beth leads him over to the truck.  Emily got there just in time with Patrick safe (soy) ice cream.  Patrick was more fascinated with the van than the ice cream, but none the less it was a hit.

The rest of the evening was spent with everyone getting ice cream, and Patrick running from person to person hugging and saying hi to them.

Then Beth let him play with her car (big points from him).  And she led him up and down the street naming all the car makes, which is one of Patricks favorite games.

I pulled Patrick aside and told him we were going on a trip on Sunday, and that we were going to go to Mickey’s

Presents!

Presents!

other house (he’s been to Disney Land a few times).

The night was great.  Big thanks to those who came.  Even bigger thanks to our wish granters Beth (and her husband Tim who accompanied her tonight), and Natasha.

We are super excited to go on our adventure.

The ice cream truck came just for Patrick.

The ice cream truck came just for Patrick.

 

The left overs of the balloons.  Each child took one home as well.

The left overs of the balloons. Each child took one home as well.