Family – Page 2 – Patrick Hoopes

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.

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

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

Summer vacation

Tomorrow marks 3 weeks since Patrick’s last day of school. For most people, summer vacation is in full swing. For us, we’re finally starting to get our bearings. It’s been an unusual start to summer.

Things seemed smooth enough. I spent that first weekend after school ended gathering myself to start a tradition Patrick and I are calling “Mommy School.” Between therapies, Patrick has a LOT of “homework”. He’s supposed to spend 10 minutes every day doing eye exercises. He’s supposed to be practicing writing and cutting and and gluing and using a keyboard. We’re supposed to be strengthening his core, working on activities that use both sides of his body evenly, and encouraging him to cross midline. He’s supposed to be practicing telling me stories in various verb tenses, using articles, and correcting his use of pronouns. Plus working on vocabulary building, sorting skills, categorization skills, social skills, attention skills and on and on. All of this to help keep him progressing on his current trajectory which, discouraging as I may find it, is approximately two years behind most of his peers.

Except, it seems, when it comes to the alphabet. Patrick has the alphabet down pat and tested in the top 25% of his preschool class.

Our first day of Mommy School. Learning the shapes of letters by building them from playdough.

A practical life mommy school lesson on how to sweep.

And so, this summer we introduced “Mommy School.” We’re doing an abbreviated letter of the day curriculum, since letters are what Patrick loves. Every week is assigned two letters and every day a word that starts with that letter. Then I go out and scrounge up books, worksheets, crafts, activities and field trips on that theme.

Teddy Bears — B is for Bears, and a teddy bear picnic.

The first day of Mommy School went GREAT! Until, that is, Patrick developed a fever. The next day of summer break was spent cuddling a sick, feverish kid in a chair. He had a cold and we were grateful to be able to stay home sick like other children. By Thursday, Patrick had mustered the energy to play on his own again. But, by then, I was sick.

Patrick sees 3 therapists on a regular basis in the summer. It's hard work, but fun too. Patrick's reward for a good hour of work in physical therapy is the chance to climb the rock wall. — Patrick sees 3 therapists on a regular basis in the summer. It’s hard work, but fun too. Patrick’s reward for a good hour of work in physical therapy is the chance to climb the rock wall.

In occupational therapy, Patrick gets to take sensory breaks in the gym. Diving in the ball pool is a favorite exercise.

Our second week of summer break, Patrick and I were finally starting to be healthy again. But Brian wasn’t. And it didn’t matter if we were healthy or not because on Saturday of that week, my little sister was getting married in my backyard. So, I declared “C is for Camping” and we pitched a tent in the living room. Amazingly, this both occupied Patrick and kept the room clean while he binged on movies and we scrambled to finish last minute details on the house and yard.

I meant to pitch a tent outdoors, but it rained all that day, so we brought it inside. It worked so well we kept it a second day, too.

We also sneaked in a couple of outings.. a family night at Red Butte Garden and a field trip with friends to the Natural History Museum. (I picked up a free month-long museum pass at the local library just so we wouldn’t have excuses to just stay home and work.) Besides, in order to get Patrick to let us work, we let him watch his birthday movies on endless loop, which left us all craving some family adventures.

Patrick loved the children's garden best, especially hopping on stepping stones across the fish pond. — Patrick loved the children’s garden best, especially hopping on stepping stones across the fish pond.

The best part of our trip to the Natural History Museum was not the dinosaur bones. It was the chance to be there with other friends who know exactly what living with Short Gut is like.

The wedding went smoother than expected, though playing hostess and trying to keep Patrick from completely melting down about how his house was filled with children who were not sharing his toys with him kept me busy enough that I didn’t manage to take a single picture.

I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom's Facebook page. — I was too busy to take pictures, but there were lots of cameras there. I snagged this one off my mom’s Facebook page.

My sister was a beautiful bride and the happy couple truly looked happy and in love. Patrick eventually settled down with Grandma who let him fetch endless cups of water from the refreshment table and pour them all over himself and her and all went well enough.

Except that it turns out that maybe the bug that had Brian sick isn’t the one that had Patrick sick as I ran a fever all night.

So, Sunday we took a sick day and we stayed and home and did absolutely nothing except that Brian cooked us a delicious roast. The day was delightful and refreshing. Perfect after two frantic weeks.

Yesterday, I put together a week’s worth of Mommy School worksheets, made a chore chart, got Patrick’s TPN labs drawn and kind of regrouped. Then, in the late afternoon, I changed Patrick’s central line dressing and discovered that, much to my dismay, what had once been a tiny little hole in the clotted side of the line had grown big enough that I was worried it would pull off. But it was after hours and I wanted the head of the IV team to be involved in choices about the repair.

So today, we spent our kind of restart to summer day exactly as summer days seem to go for us.

Over breakfast, I made a bunch of phone calls to people at the hospital trying to find the best way to get the line repaired. Eventually, I sat down and had a little cry because I wasn’t getting in touch with the people I wanted and I knew we’d have to go to the E.R.

Then, Howie gave me a pep talk and a hug and a kiss. Then he talked to Patrick and helped him to gather the courage to get his line repaired. (He was terrified that it was going to hurt when they cut the broken part off of his line.) We headed up to the E.R. where our timing really was perfect. We didn’t wait at all for them to start working. Patrick’s line is a different brand than our hospital stocks because it was placed in Nebraska, so that complicated things and the repair took about an hour and looks a bit sloppy. But it will do for a clotted line.

And then, when all was done, we headed off to the Children’s Museum for a couple of hours. We managed to get there at a nice slow time on a nice slow day. Patrick actually got to enjoy exploring the museum and would have happily stayed there all day. His favorite spots were the Bob the Builder exhibit, the gas station, and the pretend E.R.

I didn't know they'd built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time — I didn’t know they’d built on a pretend E.R. with the life flight display. Patrick found a little girl willing to play the patient and had a great time

Eventually, we had to go because I was parked in a 2 hour parking space and, honestly, we both needed a rest. So we stopped in at daddy’s office to pick up the leftovers from a lunch he’d cooked for them today. And then we came home and convinced Patrick to nap by 4.

Which brings us to right now. Brian just walked in the door to a quiet, clean house and me blogging and said, “Now that’s a sight I don’t see very often.” Here’s to maybe a little bit more of this? Perhaps a few prayers for this line to hold out through the summer and grant us a little bit of peace ..and maybe even health?

How can I help?

Yesterday when we were checking into the Ronald McDonald house, our host asked where we were from. When we said Utah, he said, “Oh! Mormon country!”… Then after a pause told us he’d just come back from Utah after helping to settle some kids who’d been through a really rough time. “Mormons really take care of their own.”

We can testify from our own experience that that is true. And yet, our amazing friends, family, and congregation are always asking what more they can do. One of the questions we hear most during these long difficult stretches is “How can I help?”

So, in tribute to all of you, and in answer to the dozens of people who have asked for ways to help over the past few weeks, I thought I’d pass our waiting room time bragging about some of the ways we’ve been helped over the years.

1. Visits.. It doesn’t matter if we’re at home or in the hospital. A new person always lightens and lifts the mood. For example, last hospital stay one of our friends was brought to the hospital for work and found herself with some extra time. She texted and asked if it was a good time to stop by. She came and, because Patrick needed out of the room, we walked down to the playroom. That’s when we discovered his line had broken and we turned around and headed back to the room. She walked with us, and as nurses swarmed the room to help the problem, noticed that the breakfast cart had come. So she went and picked up a muffin and milk for me.

I share this story for two reasons. First, it shows that you might just dive into chaos and wonder if you’re in the way. The truth is that Patrick talks about who visited all day long, whether the visit was at a “good time” or not, whether we actually had time to chat and play or not.

When we got home, another friend came to visit and brought a few new toys and a balloon. (New distractions are always a big help). Patrick’s talking about that visit a week later.

We get lonely. We get sick of each other. We need our days broken up. We may not be great hosts, but just your presence helps.

2. Food. In the Mormon world, bringing food is something we’re exceptional at. And believe it or not, it really helps. On the return from one hospital stay, a friend showed up with a pan of uncooked enchiladas. It was a few days later when we got to cooking them, but it was so nice to have a prepared meal in the fridge. Once we returned home from a trip to find a pizza on the porch. And you may remember when we charged a cookie entrance fee to visit Patrick in the PICU. Those cookies were needed sugar during time when we rarely wanted to leave Patrick’s side, and a lot of fun to share with nurses and other hospital staff and patients as we had so many of them that we couldn’t eat them all.

In the hospital, lunches are especially challenging for me. I often can’t get out of the room to get something to eat. Once, I picked up the phone to order room service to the ER 10 times in an hour and never could stay on the phone long enough to place an order. I often just skip lunch when Patrick is hospitalized. But I’m a grumpy bear when I’m hungry. Food helps me be a better mom.

If you really want to make my day when we’re in the hospital, show up with a sandwich or some snacks. (Do you know there was once when Patrick ran a fever and wanted me to lay in bed with him for 48 hours and the only food I ate were the snacks friends delivered?)

I love our family who faithfully pack Sunday picnic lunches to eat on the patio? Even though the medflight helicopters blow all of the food away when they take off and land? And I love my mom who often things to bring along things like fresh fruit and vegetables.

3. Play time. You’d have to not be looking to miss that Patrick is a VERY active and playful little boy. He wants to be doing something every moment and if he gets bored can stumble into trouble very quickly. One of the biggest helps for me is when someone will come to play.

For this entire summer, my next door neighbor’s youngest daughter has been coming over to play with Patrick. She has so much more energy than me and is more than happy to push him all around the backyard in his stroller to make him laugh, or to read books, or to do crafts. We’ve even taken a couple of field trips to a nearby splash pad. Because Patrick’s an only child, having another child to play with is an amazing gift for him. And for me? It gives me a short break from being the one who thinks of fun things to do.

Playdates are an amazing help. The patient practice Patrick gets playing with other kids. Often they come at moments where you may wonder why we’re crazy enough to go out, but it offers just the break and distraction we needed.

I’ve had teenagers come to play while I did dishes and another friend come bring the most amazing craft and science projects. I’ve even had friends ride along to doctor’s appointments to play with Patrick in the waiting room. Patrick is so happy to have the company.. And any opportunity to wipe down counters, fold some laundry, load a dishwasher without little helping hands helps me.

4. Help with the chores. That brings me to my next topic. Chores. I always have more things on my to do list than I have done. Especially since conversations with doctors, appointments, hands-on medical care, and quality time with Patrick trump household duties quite often.

My little sister is awesome about this. She often comes by in the afternoon after school or work and helps me put the toys back in the toybox, sweep, prep dinner, iron, etc. If Patrick wakes up while we’re working, she takes him to play and lets me finish.

When Patrick was coming home from the NICU, a “cleaning crew” from our church came and sanitized the house. And one sweet lady took about a dozen shirts from me, ironed them, and brought them back to put away. I’ve had people take home our laundry, wash, and return it. We’ve had neighbors water and mow our lawn, pick up our mail, bring in our garbage cans. And on and on.

It makes a home feel so peaceful when it is clean. And often, helping me clean is easier than helping with Patrick.

5. Help in medical moments. I have to give a special shout out to friends, neighbors, and family who have stepped up and learned to do things they never imagined they’d need. You have prepped TPN, given meds through a g-tube, changed countless central line dressings, restrained Patrick so I could change a button, clamped off broken lines, treated allergic reactions, caught vomit, changed diapers with our crazy diaper cream regimen, sat with a febrile little boy so I could pack a hospital bag, and on and on. And, in what is the one of the smallest and biggest things you do, you have carried Patrick’s backpack while he explored so we could sit down.

We are a part of a very, very lucky and small minority of special-needs, and especially short gut, parents who have not just one but several people we can call on in these moments. Because of you, we still make it to the temple sometimes, catch a hockey game, see a movie, and go on dates. You make it so he can go to Primary at church with the other children. You get me to the dentist. You let me nap.

5. Listen. You read my blog. You follow us on facebook. You help us troubleshoot. (Like the onesie pattern that Brian’s mom and I developed over the years to keep his line and button safe at night… or the countless little issues solved by brainstorming with other short gut families online.) You chat. You call. You stop and give me a hug and let me cry without saying anything at all.

6. Prayer. And, when you can do nothing more, you pray for us. I have felt us lifted up by your prayers. I have felt the peace of your prayers. And I have seen countless medical miracles because of your prayers. Thank you for thinking of us, praying for us, and keeping our names on prayer rolls and in prayer groups and flickering in the flame of sacred candles.

Thank you. Thank you. Thank you! How would we have made it this far without you?

And thank you for continuing to offer your help. I hope this brag list helps answer your question of how you can (or already do) help.

Mission Impossible

I probably have this idea in my head because we watched a Mission Impossible movie a couple of nights ago. But I swear that today, as I ran from one major problem to another and felt myself being powered by pure adrenaline, that my life is no less demanding than a Mission Impossible mission. Maybe a little more dull and much more sedentary.

Here’s why today had me thinking that. I stayed up till a little after 11 last night finishing off Patrick’s care notebooks, a 30 page medical history and emergency plan for Patrick’s school staff. I was woken 4 times during the night, twice by IV pumps alarming. Twice by Patrick’s mylar balloon drifting into the ceiling fan in the kitchen.

At 7:30, Patrick woke up and I tried really hard to explain that we had a busy morning and needed to get ready quickly. After a summer of lazy, he did his best but we were definitely out of practice.

We finally made it downstairs and I scrambled to put finishing touches on school supplies. That doesn’t mean pencils and papers for Patrick. It means putting together a medical supply emergency kits, diaper changing kits (with instructive labels on each bottle of cream), care notebooks, first aid response cards (miniature and laminated to fit in Patrick’s backpack), and allergy safe labels on boxes and bags of snacks.

Patrick’s school open house started at 9:30 and we got there a little after 10. I felt really bad for coming so late.

BUT we had a chance to meet some other parents and kids and explore the classroom a bit. As we were nearing the end of the open house, I had a chance to meet the speech therapist and special education teacher who’ll be working with Patrick this year. I kind of tried to make a mad scramble in my tired brain to remember the relevant information I wanted to discuss with them about his goals. I think we covered the main points and I was impressed that they seemed to be on the same page as me. Then I went over with the teacher and classroom aides a refresher course on his medical care and diaper care and what ADHD and sensory processing disorder mean for him. And, of course, how and who to reach in an emergency.

I left the classroom half an hour after the open house was due to end. We walked Patrick’s medical supplies down to the school nurses’ office, along with a copy of the emergency plan, and briefly went over their questions.

Then I pulled out my phone and noticed that I had missed phone calls. Lots and lots of phone calls.

On the drive to the school, I’d called Patrick’s dietitian to tell her that we can’t get blood to draw off of his new line right now and ask if she really needed any labwork done today. (A nurse visit popped up in the schedule yesterday.)

That call prompted her to call Patrick’s GI, Dr. Jackson, who’d spent the morning bringing himself up to speed on Patrick’s new line and being put on hold for transplant. And he was quite concerned.

Oh, and I’d missed the call back from the transplant nurse in Nebraska.

So, when I got in the car, I called back Dr. Jackson. He apparently spent the morning going over operative notes and talking to the radiologists and other surgeons. And he’d learned something about Patrick’s new line that was alarming.

We had misunderstood what we’d been told about the placement of the line. The azygus vein is not a central vein. That means, it doesn’t directly connect to the heart. The tip of the new line is in a dilated part of that vein. But, after the tip there are some collateral (spiderlike veins that grow around a clot to reroute bloodflow like the little streams that form around the sides of a river if it is partially blocked.) And it is those that are connecting to the main veins and to the heart.

And since those veins are small and could infiltrate just like a peripheral IV vein, (or swell and close off that access, too) Dr. Jackson wanted Patrick off of his TPN ASAP.

Because of Patrick’s low lipid protocol, there is a lot of sugar in his TPN. It’s a very high osmolarity formula that kind of rips up small veins. So tonight we got a shipment of a lower osmolarity, lower sugar formula to run until we get a resolution.

Dr. Jackson also contacted the nurses and doctors in Nebraska on our behalf.

Anyway, I spent the drive home talking to him, then brought Brian up to speed, grabbed a quick lunch then called back the Nebraska Medical Center. They asked me to fedex them a CD of all of the imaging done of Patrick’s vein in the recent past and e-mail them all the radiology reports I had.

By then, Patrick was pretty tired and pretty tired of me on the phone, so I tried to rock him to sleep for his nap. But the phone rang. A homecare nurse seeing if I needed my TPN pump reprogrammed. Then it rang again. The homecare pharmacist setting up a shipment of the new formula fluid.

By this point, I texted my sister. I could tell I was in over my head and needed more time than I had.

She drove over while I got Patrick down for a nap, then stayed with him while he slept. Meanwhile, I scanned all my radiology reports. Then I drove to the hospital to pick up the CD of radiology images that Dr. Jackson had requested on my behalf, stop in medical records for accompanying reports, and then down to the pharmacy for a prescription for ranitidine to replace the IV form Patrick usually gets in his TPN. Of course, on the drive up talking to the homecare pharmacy to order tubing and other supplies to go with the IV fluid. And, in the waiting room, e-mailing the nurse in Nebraska to decide that they wanted their own venogram done anyway and that they could schedule Patrick’s procedure without me sending a CD after all.

By now it was 3 p.m. and I was feeling a bit like my mind was doing stunts Tom Cruise could only dream of. I was exhausted with trying to change gears and think of entirely new life-critical details. Fortunately, 3 p.m. is 4 p.m. in Nebraska and close of business for the intestinal transplant office.

So, when I got home, I just had to make dinner and clean up a little bit until evening.

Dr. Jackson called this evening and we had a good conversation about where Patrick is and where things are going. The best phrase of the conversation was when he told me that he thought that the doctors in Nebraska are just smart and daring enough to be able to “Macgyver something” to keep Patrick listed if possible.

But we also had a good talk about where else central lines can go and how to reduce and treat clotting in veins and genetic predispositions and a whole bunch of other crazy things, kind of like Dr. Jackson and I like to do. Is it strange that he and I kind of enjoy talking over medical problems together?

The encouraging thing to me is that, although he called our situation “sobering”, I could hear in his voice that he has a lot of hope still.

And that he’s pushing to get things done, and quickly. I think he said he’d e-mailed the surgeon twice and had sent a copy of all of the radiology reports that he was able to send by e-mail to his nurse.

This evening, we received the delivery of new fluid and got it started. (The sad thing about this change is that, with fewer calories, Patrick can’t afford a tubes-free time every day. The good thing is, the bags are split into two per day so they weigh less and he’ll be able to wear his pack.).. After connecting his fluids for the night, we picked out clothes for school, put on PJ’s, and tucked Patrick into bed.

I’m hoping for a little more calm tomorrow. I’m happy Patrick doesn’t miss the first day back at preschool. And that, amazingly, we pulled that all together in the midst of all of the rest of this madness.

And maybe I can get phone calls done while he’s at school. Maybe even a plan for how to get out to Omaha. Maybe.

Or maybe, if they’re not ready for me yet, I’ll just go sit on the lawn at the park next door and read a book and delight in the knowledge that at 10:15 every Monday-Thursday, Patrick gets to go visit the sensory room. And all his favorite aides from his old class get to come into his new class for morning circle time. And some of his familiar friends are still there.

I think I had enough adrenaline for one day today. Heck, I’ve had enough this month to get me by for a year.

Christmas in Patrick’s House

Well, despite the fact that Patrick spent most of the week before doing forbidden things and saying “naughty, naughty, naughty,” Santa still came to Patrick’s house.

I was very excited to share Christmas with a little boy finally old enough to understand. In fact, I was wide awake at 5 a.m. after having a horrible dream about needing to collect a sample to test for C-Diff… and could barely get back to sleep because I knew it was Christmas!

Patrick, on the other hand, slept until 9. Brian and I actually got up and started making breakfast before the little munchkin dragged himself out of bed. Who was I to argue with him sleeping in on a day when naps would be near impossible?

He loved opening presents, though wasn’t so keen on the fact that mom and dad kept taking the new toy away to give him another present to open.

Still, it was quite the Christmas complete with lots of Elmo, cars, new clothes, books, and a stocking with goodies of bottled water and puffs.

Then, we finished breakfast. I found that I could make decent eggless milkless pancakes from a mix, so we made some silver dollar sized pancakes for Patrick and some big, fluffy, pecan laden pancakes for mom and dad.

We ate and then, still in PJ’s went to take presents grandma and grandpa. The rest of the day we visited family. We had a big family get-together with my family at my grandpa’s house. The place was so packed with cousins and gifts that you could barely walk!

We spent the evening with Brian’s family. His brothers drove in from out of state and for the first time in years, the whole family was together on Christmas day.

At last, exhausted, we headed home to bed. Christmas was everything I could have dreamed!

As I reflect back on this Christmas season, I realize just how blessed we have been this year. In the midst of all the hustle and bustle, the presents and family and good food… I’ve had a few little moments where I realize that we have been given the greatest possible gift this year. Our little boy was able to share in all of the Christmas magic with us.

This year, Brian’s company party took us to the theater for a production of A Christmas Carol. You know, I think I’ve seen or read that story at least a hundred time in many, many formats. I’ll admit, the character Tiny Tim has always seemed a bit romanticized to me.. how could a little boy really make THAT big of a difference?

This year, it took a conscious effort to hold back the tears. Having Patrick in my life has taught me just how a very special child can really touch hearts and lives. I understand why Bob Cratchit would stay working for that awful Scrooge. And what’s more, I understand why Christmas in their house was so very special.

Dickens described Christmas in the Cratchit household with these words:

“There was nothing of high mark in this. They were not a handsome family; they were not well dressed; their shoes were far from being water-proof; their clothes were scanty; . . . But, they were happy, grateful, pleased with one another, and contented with the time; and when they faded, and looked happier yet in the bright sprinklings of the Spirit’s torch at parting, Scrooge had his eye upon them, and especially on Tiny Tim, until the last.”

Happy, grateful, please with one another, and contented with the time. That is how I’d describe our Christmas this year. With our own Tiny Tim, each seems a little more precious.

Yes. We had a very merry Christmas in our house.

Christmas Eve in Patrick’s house

This year was Patrick’s 3rd Christmas.. And, once again, we were blessed that he was well enough to spend it at home. Still, with Patrick’s needs, getting ready for Christmas was quite a feat! I was exhausted in the days and weeks before but, looking back, all of it was worth it!

In our family, we start celebrating on Christmas Eve. Daddy got the day off again this year, so we were able to spend the whole day together. First, we went to Christmas Eve breakfast with my family.

It took some effort to keep Patrick safely away from the eggs, but thanks to everyone’s help, we managed. Then, we exchanged presents and Patrick got to play with his cousins, aunts, uncles and grandparents.

Then, we packed up and headed to the zoo. Christmas Eve at the zoo is a tradition Brian and I started before having kids and this year Patrick was strong enough and old enough to take with us.

The zoo on Christmas Eve is a different place. It’s much less crowded. It’s cold. The animals are all given Christmas treats. These factors bring out a different side of the animals. This year, for example, we got to watch a rhino take a mud bath. And Patrick got to visit with a very unshy cavy.

Patrick managed a nap in the car on the way home.. just enough to be up and active the rest of the afternoon. It took some help from daddy to free me up to cook Christmas Eve dinner.

I tried to keep the dinner simple but elegant, after all.. the only part Patrick cared about were the rolls.

After dinner, we open just a few presents. Pajamas, of course, and a book. We decided this year to start a tradition of getting a new Christmas book to read on Christmas Eve.

Then, as Patrick had only had one very short nap, we put tucked him in bed, set out the presents, and went to bed early ourselves.

Trick or Treat – but hold the treat

Because Halloween fell on Sunday this year, it was celebrated on early in Utah. This gave us the rare opportunity to celebrate Halloween and Patrick’s birthday separately. And just in time, too… as Patrick is just old enough to enjoy the ideas of costumes, walking, and collecting small things in a little bag. A perfect year to introduce him to trick-or-treating without the woes of having to make up for the fact that he’s not allowed to eat candy.

We started our celebrations on Friday. Brian’s office invited the children of employees to come in to the office and trick-or-treat desk to desk. So we got Patrick all dressed up and went to spend the morning at daddy’s work.

Patrick was a lion this year. We lucked out on the costume. We ordered it online… early… to allow time for me to make modifications to allow for his tubes and his brace. But no adjustments were necessary. The snaps were all in just the right places. And Patrick loved the hood (still asks to put it on to play) and the little mittens. He’d ask to put his hands in the gloves, then wave them around excitedly.

Our very talented friend Jillian made a little trick-or-treat bag that Patrick could carry on his arm to collect treats in. I had a larger trick or treat bucket to move things to when the bag got too full or too distracting.

Trick or treating in the office was fun. We went from floor to floor and Patrick got to flirt with the women, show off for the men, and collect lots of little candies in his bag. It was funny that, although he’s never tried candy in his life, he seemed to prefer the M&M’s. Brian kept trying to sway him to different treats, since mommy and daddy would be eating them, not Patrick… but Patrick was persistent in choosing the M&M’s whereever they were offered.

Saturday morning was still a flurry of getting ready for Patrick’s birthday party on Sunday.. but by afternoon we were ready to go trick-or-treating again.

We started with grandparents. Patrick enjoyed showing off his costume and playing with the little toys that each had gotten for him in lieu of candy. Then, we hurried on our way hoping to make it home before the day’s rain made it too cold to want to go out.
We made it home after the worst of the storm and ate dinner, but it was still sprinkling when we loaded him into the brand new wagon we’d gotten as a birthday present. The ward had scheduled a trunk or treat, but chickened out in the rain. So we went ahead with our original plan to just visit a few close friends.

At first, Patrick was happy enough and quite adorable. He’d wander up with me to the door and try to go in, then act confused when we put candy in his bag and walked away.

After a couple of houses, though, this wasn’t much fun anymore either. He didn’t get why we were doing this and his foot seemed to hurt, to boot. He started to cry whenever we took him out of the wagon, so we went to just a couple more houses and then came back home.

He was content to spend the rest of the evening moving his treats from his trick or treat bag to the bucket and back. He got sleepy and went to bed around 8, thoroughly worn out.

All in all, it was a pretty successful first attempt at trick-or-treat for Halloween.

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.

An evening to remember

It’s been two weeks since Patrick’s Hope Concert and I haven’t blogged about it yet because, well, how do you even try to capture something like that? It was something we’ll never EVER forget!

Friends, families and even strangers came together in amazing ways.

Brian met the sound crew and musicians at 1:00 p.m. I think he had a great time tagging along during sound checks.

Meanwhile, our wonderful friends and family worked to set up the silent auction.

It was after 5 when I got Patrick’s afternoon medical care taken care of and got back to the school where the concert was being held. What I found was amazing! All the auction donations displayed on tables looked so different than they have sitting in my basement. The community was so generous! There was far more there than I’d realized had been given.

The auditorium seemed to have been transformed. When we toured the school months ago it had seemed like a shabby school auditorium. Now, with instruments on the stage and Patrick’s image filling the wall, it looked like a concert hall.

Before long, volunteers and guests started arriving. Soon the lobby was shoulder to shoulder with people we love. Our adoption caseworker was there. So were some of Patrick’s favorite nurses. Co-workers. Friends from church. Family. His doctor. I wish there had been more time so we could have visited with all of you.

We decided to watch the concert from the balcony. (It wasn’t officially open). We wanted Patrick to have lots of room.. and to watch the concert where it wouldn’t matter if the applause scared him or if he was too sleepy. This was a good thing because his only nap was 11 a.m. and the concert started just half an hour before bedtime.

We owe a huge thank you to Paul Cardall for all he did to put together an amazing concert! He had me crying from the start. The other musicians deserve a thank you, too.. For giving their time, talent, and even equipment to make the night work. So thank you Charley, Sam, Mindy, Steven, Marshall, Kevin.. and to the other musicians who I may not have met but who came and shared their time and talents.

It was so fun to see everyone in Patrick’s “Got Guts?” t-shirts! Just one more thing that made us realize that this night really was for our family!

A big thanks is also owed to Seth Mitchell who worked miracles in getting us a concert quality sound system, donated no less, and a crew of very talented engineers who mixed sound, ran lighting, and otherwise put together the look and feel of the concert. We couldn’t have done it without you!

While I’m expressing thanks..Thank you to my mom who put so much time and effort into pulling this event off! Neither one of us knew what we were doing, but you certainly stepped up and figured it out. Thanks to the rest of our friends and family. Dad, Dick, Phyllis, Jill, Cindy, Michelle, Jay and friends Kirstie and Tifanie who came to meeting after meeting and worked to pull everything together. Thanks to the many friends and family members who came to staff the event. Thanks for keeping me sane!

Thanks to the businesses and individuals who gave to the silent auction. I was touched with each donation that would show up. I wish there was space to put all the stories here.. as almost every item has a story behind it.

And finally.. thanks to all of you who came to share the evening with us! In that big auditorium, we looked few in number.. but there were several hundred of you there. The event definitely made a difference! We more than doubled the donations received thus far. I don’t dare publish a number, because my doorbell still is ringing with people giving more.

Beyond helping with Patrick’s transplant fund, though… You helped us a lot by heart, too! Knowing that there are so many of you who would give up a Saturday evening to come and celebrate Patrick’s life with us was means so much!

This has been a tremendous journey with Patrick. Each day with him is a miracle. I feel as though he’s outlived his expiration date time and again. It was wonderful to be able to take a night and celebrate that miracle with the people who mean the most to us.

Who needs sleep?

There’s a song by the Barenaked Ladies called “Who needs sleep?” Here’s a line from that song: “With all life has to offer, there’s so much to be enjoyed. But the pleasures of insomia are ones I can’t avoid.”

If you’ve been waiting for an update on the concert, I need to apologize. See, Patrick’s been having a hard time sleeping this week. It seems every few nights something goes wrong and wakes him up. First it was diaper rash. (When his prescription strength creams fail him, the result is massive skin breakdown that makes me want to cry just looking at it.) Then, I accidentally turned off his TPN pump and had to monitor glucose and hydration in the middle of the night. And my little happy-go-lucky optimist responds to these discomforts by trying to cheerfully play through them. So instead of being up crying, he’s up jumping and playing until I pinpoint the cause of discomfort and get him settled.

So – my good intentions of writing earlier in the week were thwarted by extreme exhaustion. And then a series of coincidences landed us in the hospital for about 36 hours.. not helping sleep, but helping to remind me not to procrastinate.

Here’s a rundown of the other events of the week.

Wednesday, Patrick had an appointment with his GI, Dr. Jackson. Patrick’s central line was a bit slow to heal this time around and was a bit weepy even 2 weeks after placement. So I asked the doctor to look just to make sure there was no infection there. Since we were looking for infection, he checked his temperature and it was 99.3. So – Patrick and I hung around for an extra couple hours in the hospital. Dr. Jackson came in and we took off his central line dressing so he could examine it up close and take a culture of any fluid that was there. It looked healthy, just healing, so I went ahead and put the dressing back on. Then we went down to the lab and had blood cultures drawn. Those cultures were all negative.

That night, I got that getting sick tickle in my throat and started to run low-grade fevers.. kind of like when you get a flu shot. Never sick, but not quite right. Since the cultures were clean, I said “Ok, he has a virus, too” and didn’t think more of it.

Friday, Brian came home early from work and since we’d all missed a lot of sleep, we all laid down for a nap. I got Patrick up to put on his afternoon TPN around 4. Only when I tried to draw ethanol out of his line, I just got air. Tried again, got air again. Finally, 3 syringes full of air later, I looked and found a hole in Patrick’s central line.

So away to the E.R. we went. They’ve implemented a new policy that sent us to the Rapid Treatment Unit (RTU) for the repair which, by the way, is WAY preferrable to the E.R. Many fewer bugs and much quicker, more attentive care. The RTU is set up to give basic medical care that takes 24 hours or less.

Well, part of any admission is to check a temperature and Patrick’s read about 100. They rechecked it rectally and it came up 99.8, so we could justify not automatically being admitted. I explained the viral symptoms, but they decided to check cultures anyway. Then they repaired the line and sent us on our way.

The next day, Patrick woke up feeling great! No fevers. So since it was memorial day weekend, we packed up and headed out to Tabiona – a small town in Eastern Utah – for a family reunion. He loved the car ride.. playing in the back seat, singing with the radio, napping, and even trying to figure out how to whistle. Had a great day with cousins, aunts and uncles.

That evening, we got home to find two messages on our answering machine. The blood cultures they’d drawn were showing a staph infection.

Now, in case you haven’t noticed this, I’ve spent a lot of time learning from infectious disease over the past year. And one thing they’ve taught me is that 1 in every 20 positive cultures is a “contaminant”.. that is, something that grew in the culture that didn’t come from the blood sample taken. And staph, although it lives on all of our skin and can get into central lines, usually isn’t one you pick up at home. It’s most often contracted in the ICU. Every positive “staph” culture Patrick has ever had has been a contaminant.

So – I called the doctor and made my case that Patrick wasn’t sick and that this was likely a contaminant. We decided to recheck the cultures on Sunday.

Well, Monday morning rolled around. For once, we were planning to be home for Brian’s day off and had a big to-do list.. And at 8 a.m. the phone rang. Sunday’s culture was positive for staph, too. Patrick’s still healthy, but we’d better go in.

So, just to be safe, that’s what we did. We got there at 9:30. Because it was a holiday, things took longer than usual.. but by early afternoon they’d drawn a new set of blood cultures and by 4:00 p.m. had started some antibiotics. Meanwhile, Patrick’s nurses got to run to try to take care of all of his basic daily needs.. a slow process when doctors have to write for them and pharmacy has to fill them before it can happen.

A quick soapbox moment. One of the most frustrating things about going into the hospital is how difficult it is to maintain the same quality of care and quality of life as at home. There are so many more steps, so many more people, and so many more lawsuit-prevention policies that it is exponentially more difficult to accomplish the same things that I do at home in the midst of daily life. In a short 36 hour stay, I think the nurses had to call the pharmacy at least 10 times about administration questions, late medications, and my ever-hated argument about whether or not they’ll let Patrick have his home TPN. (I usually lose this battle and they hang something with sugar, water and electrolytes but none of the good vitamins, minerals, and fats that he’s used to.) They started him out on a super high dose of antibiotics. (I won’t let that happen again. I’ve seen it done 3 times now with the same result and I’ll speak up next time.) And they accidentally ran his TPN at a 5% of it’s prescribed rate for the night. ( Thankfully, this only resulted in a grumpy, sleepless night as Patrick got hungrier and thirstier. They caught it in the morning and there was no other harm done.) I can’t really fault the nurses here. They work their tails off trying to get everything right within Patrick’s first 24 hours. The fact of the matter is that he’s a complex kid who has a lot of special care. For me it’s routine.. but in the hospital, it’s the exception. In fact, there are some things that require special permission every time because it doesn’t match hospital policy. Still, it’s frustrating to me to have to work so much harder to maintain the status quo. I much prefer to just do it myself at home. Ok. Getting off my soapbox now.

Yesterday morning, Dr. Jackson came on service. I ran into him at the nurse’s desk looking up info to find out why Patrick was in the hospital. We talked about the 4 sets of blood cultures that had been drawn. By then, the cultures drawn in the hospital Monday were still negative for infection. Looking back, it was looking more and more likely that we’d had two contaminants in a row. So Dr. Jackson said the words that we love him for saying so often: “I think you can do this at home. Would you like to go home?”

He helped sort out a few more questions and then set the wheels in motion for us to go home. Because they’d started Patrick on an extremely high dose of antibiotic, we had to stay till 4 to have them check his blood one more time to make sure that he’d been able to get it back out of his system. Brian got off work and up to the hospital by 5:30 p.m. and we made it home shortly after that.

Patrick will be on antibiotics for the next 2 days at least and then they’ll check cultures again to make sure that he doesn’t have a real infection. And then hopefully things can go back to our at-home normal again for a while.

Whatever happens, we’re resolved to made better use of this time at home. Procrastination isn’t really an option when you can’t tell where you’ll be hour to hour. I would hate to get the transplant call and leave my house in the condition it’s in right now.

And – I’ll be getting that blog entry about the concert up hopefully before the end of the day tomorrow.

Oh – the best news of all? With us healthy and at home, Patrick slept a blissful 11 hours last night! Which meant mom and dad got some sleep for once, too.