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.
Patrick Hoopes 