Tag: Ronald McDonald House

Transplant Day 43 and Celebrating 11 years

(Sorry.. Internet connection isn’t doing syncing pictures right now. Will edit and add later if I can.)

Today is our wedding anniversary. The week has been so crazy that I wasn’t sure how today was going to turn out. We got the day off of labs so we slept all the way till 8 a.m. But then when we woke up, getting ready quickly was important. Still have to get meds from the fridge downstairs by 9 a.m.

But the morning routine is getting better. Brian sent a package yesterday and so I opened that while Patrick was in the bath. It had a few thoughtful little gifts in it. It made me really, really miss my best friend. But one of the gifts was a necklace that I have been able to wear all day to remind me of him. I have been so glad that we went big with a Disney trip last year as we’ve had to spend this day apart.

Thankfully, it’s been an overall happy day. A group home nearby comes every day to clean the playroom toys. Today, they were later than usual, which meant that we got to spend the morning downstairs playing. The rest of the house was really quiet so it was a great time to get to be out of the room. That’s how you got multiple blog posts today.

I ordered Brian a pizza and pizza cookie. I really wanted to find a way to send him warm cookies for our anniversary.. And to tell him that I’ve been working on other plans. The pizza place was kind of enough to put a note in the pizza for me, even. Then Patrick and I went upstairs.We stopped by the office because they kept coming and telling me I’d received flowers. (Don’t I have a sweet husband? It’s fun to get flowers in a place where people get excited about them coming.)

Then I made lunch and I fully intended to put Patrick down for a nap. But then my phone rang and it was his homeschool teacher cancelling class today because he had a fever and was going home sick. Then, people started to come inside and tell us what a beautiful day it was outside. Patrick had been begging me to take him for a walk in one of the house’s wagons. So, I gave in.

We had a great time. (And I met my FitBit step goal for the first time in almost a month.) And, yeah, it was so nice that I still didn’t feel right making Patrick go sleep the day away. Instead, I offered to take him to the park. One of the moms here pulled out a local guidebook that they’ve put together and gave me the address of a nearby park. It was only a few blocks away and it was perfect for Patrick’s mood. Quiet. Small enough to not be too hard for his recovering body. He was so happy he was literally jumping up for joy.

Then he got really, REALLY tired. He asked to go back to sleep, but then remembered that he had a $1 bill in his pocket that had come in the mail yesterday and he was dying to spend it. I wanted to do some shopping anyway, so we packed up in the car and we drove to one of my favorite on-a-budget stores: Aldi.

But we didn’t find a way for Patrick to spend his money there. I had, however, noticed a Family Dollar on our drive out and knew that they bring in crazy cheap toys for Christmas. So we stopped there instead. He picked out a remote control car. (Ok ,ok. Not $1. He actually had another $10 that he’d forgotten about so I gave it to him to spend when he spotted this car.) I found a shelf of kid’s knit gloves. I’ve been looking for those EVERYWHERE! Patrick can’t help himself touching things everywhere we go. Kid’s vinyl gloves are not really accessible and also not really comfortable. But little knit gloves? We can stick those in the car and put them on when we get somewhere he might need them. And then, we can bring them home and stick them in the wash. I bought 14 pairs of knit gloves. Some are pink. Patrick insisted. And that’s ok.

When we got back, he really WAS tired. I meant to come back and just cuddle up in the room and watch TV and maybe he’d fall asleep for a bit and that would be ok. But his new car required a screwdriver to get open. And then we discovered that there was a big stack of mail for Patrick today.

Oh my gosh do we feel spoiled today! Savannah, Maria, Emily, and Clarene.. Thank you! Those packages just on time to make today feel a little more special.

And speaking of special, tonight’s dinner group brought along Santa Claus. Patrick was so excited to see him again that he ended up first in line. But then he froze and couldn’t remember what he was supposed to tell him he wanted. He also pulled one of his new favorite tricks on him and pretended he didn’t know his own name. It was a great Santa moment.

Santa brought a bag of beanie bears and Patrick picked one out with polka dots, then named her Chrissy after his favorite friend from school. (Have I mentioned that I taught Patrick about naming stuffed animals this week? He’s received 2 others this week. A stuffed dog he named Cookie. And a purple teddy bear that he’s bounced back and forth between calling Pink and Cute Bear.)

Anyway.. once Santa left, Patrick was for sure ready for bed. We came up to the room and he went and picked out his pajamas. I told him he could start changing while I got meds.. But with the hospital here preferring that we loop his line up instead of down, he accidentally tugged it and pulled his dressing off. I did my first dressing change here. It went ok. Patrick actually did a decent job helping out.. being my non-sterile hands.. a job usually reserved for another grown up. And we managed to get by with the very different dressing change kit provided by a new homecare company.

Then, we make a very quick Christmas ornament, read our nightly scriptures, practiced how to pronounce “Bethlehem”, said our prayers and laid down to sleep. Patrick was out in minutes and is fast asleep now.

So I’m wrapping up this blog post and hurrying off to the kitchen to get some more formula for the night and post what I’ve written. Then, if I’m lucky, I hope to get my husband on the phone for a bit on our anniversary.

11 years is worth some celebration! Especially 11 years married to my best friend. We’ve known each other over half our lives. Howie (or as you know him, Brian) has always been my anchor. He calms me down. He teaches me patience. He has carried me through all of my hardest times. It doesn’t matter if we are right next to each other or oceans apart, we have always been best together. But I sure am excited that there’s only one more week of this particular apart time because I miss him a lot. Especially today.

The week in pictures

So while I’ve got an internet connection, I thought I should probably share some of the pictures that have been taken since we left the hospital.

Transplant Day 42 and His First Checkup

Patrick asked me to take this picture with him and the Ronald McDonald on the wall.
Patrick asked me to take this picture with him and the Ronald McDonald on the wall.

Well, 72 hours since discharge as I’m writing this and I am amazed to say that today it seems we maybe hit our stride a little bit. Amazing, considering how out of control things still seemed last night.

Sneaking back into the room last night after blogging, I noticed the distinct smell of formula and knew that it meant that Patrick’s g-tube had come open and leaked all over him and the bed. That woke him enough that I gave in and crawled in his bed to sleep last night.

At 7, his pump alarmed, waking is both. It was an early morning, but meant we had time to get ready. It took some courage for me to figure out how to get Patrick a bath with his new ostomy without losing the pouch. Yesterday morning, I knew the pouch was about to fall off anyway so we tried it and, sure enough, I had to change the bag that afternoon. But today, we did a bath again and it was ok.

Putting Patrick in the bath helps mornings go much more smoothly than showers. It means I can leave him for a bit. For example, this morning I was able to get the bed stripped so it could be washed. Patrick is chilled so easily right now. I don’t know if htat’s because his hospital room was so hot for a month and the weather outside is so cold.. But he gets shivers all over at the slightest cold. So I’ve started wrapping him in two towels. His calls this his towel dress and it is the highlight of his morning.

Being up early this morning also meant I managed to get a shower in before the nurse came. And, amazingly, Patrick woke up feeling good enough to not need Zofran this morning. That will earn me an extra half hour of sleep every day.

I didn’t feel lost looking at Patrick’s meds this morning. I kind of know what he’s getting and when and how much prep to do in the room before taking them downstairs.  So after labs were drawn, we went downstairs and gave meds and mixed formula. (Which I remembered to make with warm water so it dissolved better.) And then I made pancakes. That felt like quite the luxury. Patrick ate 2 bites. Turns out we don’t love sugar free syrup from IHOP.

Then I glanced at my phone and noticed I’d missed a call when I was in the shower. It was the transplant clinic asking if we could come in early for Patrick’s appointment today.  So, we hurried off to run our one errand of the day, and then rushed to the transplant clinic.

I am used to doctor’s visits where the answer is “you’re doing as well as you can. Nothing can change till after transplant.” Instead, today things were moving. Patrick’s prograf levels were still high this morning, but for fear of swinging him the other direction, they are leaving his dose the same. That means that he gets to take the morning off of labwork tomorrow and have it done Saturday, instead.

Because he is tolerating feeds SO incredibly well, they are said that we can start giving him a break in his feeding schedule. We’ll increase his feed rate by 8 cc’s and he can have 2 hours off. If that goes well, then after the weekend, we’ll go up again and he’ll get 4 hours off. Because of the diproblems with his lungs, they will go very slow in transitioning him to a different formula. So he probably won’t gain much weight in the next little bit because he isn’t getting a lot of fat.. But slowly that can be reintroduced.

Alas, the formula that they often use next has milk in it, so we need to take our time going to a hyperallergenic formula instead.

And that’s that. We came home from clinic and tried to eat lunch. But Patrick was bored and sleepy, so he spent the afternoon napping and I have mostly just spent my afternoon laying here keeping him asleep… though I snuck out of bed to write this blog post.

I finally realized today that I can write the post in a word processor and then just copy and paste when I go in a room that has an internet connection. It might mean some delayed posting, but should be a little more effective than trying to get away in a room with internet long enough to write.

Follow-up added this morning after:

We were woken from nap by a phone call saying that dinner was ready. Patrick was still all over the place at dinner, but thankfully the crowd was small because he’d slept through the start of movie night at the hospital.  Dinner is very overstimulating for him. So we usually retreat to our room early.

Last night, we had good incentive. We’d picked up a Christmas tree earlier and I finally brought it into the room. We set up the Christmas tree and hung the ornament he’s made thus far on it. Then went and made two more. I cleaned out the room a little bit more. I think we may finally be almost moved in. I can’t even imagine moving houses with a kid this age.

And then, we made it to bed. Patrick’s prograf levels must still be high because he just can’t fall asleep at night. Last night, he wouldn’t stop playing with his hands. I was really grateful for the chance to visit with an older transplant patient who is staying here. He explained that the prograf makes his hands shake, hurt, and even lock. Last night, Patrick wouldn’t stop playing with his hands. So I thought to ask him if his hands were hurting. The answer was yes. And so I laid there and rubbed his hands till he settled down. Then I told him I was just too sleepy to stay up with him anymore. I went and laid down and he was asleep in 15 minutes.

We slept in till 8 this morning. No labs today. It felt luxurious. And now we’re downstairs letting him play in the playroom. Which means a little bit of internet time for me.

Yesterday gave me hope. We had some downtime and I think that will get better the more used to this new routine.

Transplant Day 41 and Home Away from Home

Ok – lest there begin to be rioting in the streets, I am grabbing a moment with Patrick finally sleeping. I can’t get my laptop to work inside my room at the Ronald McDonald House and my brilliant husband isn’t here to fix it.. So the only way I can get both internet and a keyboard is to sit in the kitchen.

So – here I am. What can I tell you about the past few days?

Monday morning, Patrick was looking and feeling great. The labs confirmed that Patrick’s medication levels were in the safe range. That meant that it was ok for him to be discharged from the hospital. I’d forgotten what a big feat that is when you are setting up all new home care. All day long I cleaned and packed and then tried to throw in playing and resting time with Patrick. He was excited so he couldn’t fall asleep to nap, but as the day wore on that meant that he was more and more tired, and therefore more and more excited.

The insurance company seemed to throw a kink in things right at the end, saying that Patrick’s formula couldn’t be covered through the home health agency and needed to go through a pharmacy instead. I had some worried conversation and made several phone calls and then finally decided to call directly. It turned out to not be the a problem at all, just needed to be preauthorized. But it created a fair amount of worry for a few hours.

Otherwise, though, we just sat and twiddled our thumbs until late afternoon when the pharmacists and case managers and everyone started to finally come in. I ran to the pharmacy to pick up one last prescription. It sounded easy, but took several phone calls and two trips to the pharmacy to sort it out.

Thanks to that, we ended up not leaving until 6 p.m. By then, Patrick was beyond tired and I was frazzled. We arrived at the Ronald McDonald House right before dinner time. Patrick was really scared about moving out of the hospital. He kept asking me who the nurse was going to be and if we could go back.

We had a mountain of medical supplies arrive as we did that needed to be put away. It took all of Tuesday to get things out of boxes and into shelves and drawers and otherwise in a state where I could work with them. Especially because Patrick was following behind me trying to explore and help as i worked. The room looked like a tornado hit it. I had two huge piles of laundry.  And medical supplies just overflowing.

The medications were especially intimidating to me, when it was time to start giving them I started to really wonder if I’d been paying good enough attention. But we made it through and Patrick slept for the entire night in his bed by himself. It was amazing.

The next morning, we woke early and hurried to get ready so we could get ready to meet the home nurse. We’ll be doing daily lab draws for a while to check his medication levels. They also required that someone come and watch me mix Patrick’s first batch of formula. I guess they have problems with someone mismeasuring.

However, it was nice to have the second set of eyes on the problem as it turned out that Patrick’s formula required 2 liters of water, plus nearly 3 cups of powdered formula and I ended up pouring from one pitcher to another to make the full batch.

After that, the priority of the day was moving day. We went grocery shopping and to get some things from Walmart (including a bigger pitcher). Patrick was so tired after just half an hour shopping that he was hugging me and begging me to go. But it was good to know that we had food choices in the house for him. With his allergies, he needs to have his own food.

We came back to the room and got Patrick as much of a nap as possible, but after about an hour my phone started to ring with different people checking in to see how Patrick’s first day was going. That woke him and then we were up and running again.

Patrick’s medical care is a pretty strict schedule right now.

At 7, I give him an anti-nausea medicine through his g-tube while he sleeps. We get up around 7:30 to get ready for the day. We cover his line and his ostomy to get him into the bath. Then get dressed and draw up the morning medicines. (At least the ones that are in the room.) I open 6-9 different pills and dump the powder out and mix it with water for one medication. Another 2 have to be kept in the fridge downstairs. Then I pack up the materials needed to draw labs off of Patrick’s line.

The nurse arrives at 8:30 and takes a set of vitals and draws labs. Then at 9 we give medications.

His formula has to be mixed once a day. I’m only supposed to put 4 hours’ worth in the bag at a time so we have to refill and reprogram regularly, including during the night (unless I can talk them into a bigger bag with ice with it with next month’s order.)

Dinner is at 6:30 and Patrick loves and can’t focus at all during dinner. He is all over the place when we are out in the house.

His prograf levels have been too high for the past couple of days. That means that he is struggling with insomnia. That is made worse by the fact that I can’t just lay down and sleep in his bed next to him if I’m going to be up doing medicines and refill feeds during the night.

Today, he was dead tired all day which made it really hard for him to focus on anything. We did get the laundry done. We tried to go play in the playroom, but timed it just as the volunteers who clean the toys arrived. So we went to our room and I decided to make him nap instead.

Today during nap, I figured out how to make the door stay quiet enough for me to sneak out and I was able to get out and eat lunch and move along laundry. And that made him rested enough to make it back to the hospital on time for a last-minute invite to go meet Santa.

Patrick was adorable with Santa. He thought he’d be there with his gift, but I explained we were meeting him to tell him what he wanted. So as soon as Santa came up, he told him his wishes.

Then, they gave him a gift. He tried to return it because it wasn’t what he was asking for.

It was hard to drag him away, but his teacher was coming for school today. That didn’t go great with him being tired.. But once we got past that, I was able to see a little more clearly how he was feeling. We finally ended up in the room letting him lay on the bed watching Blues Clues and that went a lot better.

And then tonight, we had a talk about the fact that I’d need to get out of his bed to take care of him but would be back. And, although it took an hour and a half to fall asleep, when he finally made it, he did so deeply and without tears.

And that’s how I’m here writing right now. I’m not doing a great job. I’m fairly distracted.. But at least you know a little bit how things are going. Patrick’s needing pretty constant supervision so even though it doesn’t seem I’m doing a lot as I describe my day, I’m working pretty constantly from the moment I woke up.

We’ll do better with time to establish a routine. And as they get Patrick’s prograf levels in range so he doesn’t feel so crazy.  I just keep telling myself, a new normal takes at least a month.. and more if it’s a big new normal.

Meanwhile, it’s nice to be where there are other moms kind of watching out for us and people cooking for us every evening. Even if it is easy to get stuck talking when I should maybe be doing other things.

Please forgive me for no pictures. I’m realizing now I left my phone in my room and can’t add pictures from it on the laptop. Maybe i’ll add a blog post just for pictures.

For now, though, I’ve got to go get back to the room before Patrick misses me.

Transplant Day 24 and a fever

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Well, I hit post last night and crawled in bed with Patrick as promised.. Only to have Brian notice as he moved Patrick to bed that he felt kind of warm to the touch. Patrick was running a fever of about 101. So they called the doctors and they ordered blood cultures (including peripheral ones, which means they had to use a needle which always makes him scared and sad.) Then, they gave him Tylenol and told him he could sleep.

His night wasn’t the greatest. He tossed and turned and felt like he was burning up. But, with Tylenol, he didn’t register another fever. And this morning he wasn’t the happiest, but he was ok.

I talked to the nurse this morning and asked if we could get cultures on the other side of Patrick’s line and also test to see if he had a virus. So they did a respiratory viral panel. (Sidenote, this is abbreviated RVP here, but VRP at home and they keep correcting us here thinking we are making a mistake, when really it’s just a difference in word order.)

The viral panel was negative and it’s been almost 24 hour and the first set of cultures is also negative. His lungs sound clear. Patrick’s done ok all day, though didn’t seem to feel much like himself.

They don’t usually start antibiotics for their transplant kids unless fevers either get really high or last a long time or they can’t find a cause.

Finally, this evening, we let his Tylenol wear off again. Patrick kind of curled up in a ball and started to breathe heavily. Sure enough, the fever was back at 101.

This is proving to be a tricky balance. We don’t really want to give him narcotic pain medicines anymore. But the alternative is Tylenol, which hides a fever. We don’t know if he’s really had this problem lurking but hidden for a while. And the team keeps saying that Patrick only ran a fever once in the previous day, when really it’s just that Patrick could only handle the pain of his tylenol wearing off enough to show a fever once in the past day.

Because Patrick hasn’t been feeling well, we have had a pretty quiet Sunday. I had to go do some laundry at the Ronald McDonald House this morning. While I was there, I did a little bit of rearranging and organizing to get the room ready for Patrick to come there. It’s small and organization is going to matter.

Then Brian called and said the elders were on their way with the sacrament, so I hurried back.

Usually, I would have done some homeschool-style Sunday School today.. But none of us really felt like doing much of anything.. So maybe we’ll wait till later in the week.

So, we are just waiting and watching and praying that if something needs to be discovered and treated, that it will be. Otherwise, we just keep planning for the best case scenario that Patrick might be ready to move out of the hospital one of these days. After all, it’s a holiday week and if we follow Patrick’s rules for holidays, something big has gotta happen.

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Transplant Day 9 and Home Away from Home

IMG_20141108_101346Medically, today was very uneventful. I can’t remember Patrick every being so low maintenance when in the hospital.  He has his TPN that runs over 24 hours (at half the rate it was running before). He has some replacement fluids, which are about 1% of what he was needing before. Then an antiviral that goes in his IV. All the rest, his anti-rejection medications, his acid reducers, his pain medicine.. they all just go in his g-tube. Other than the pain medicine, he only has things scheduled every 12 hours. I swear I was told that medications were going to be more complicated than this. We must not be to final doses yet or something.

Anyway, the team came around this morning and so far, he’s still doing great. They left his g-tube clamped all day, instead of to drain. And that was ok (for the first time in ever.) They also wrote orders for Patrick to start taking clear liquids. He was so excited when I brought him a cup of water after days of begging for one.  He even got to eat dinner with us.

Otherwise, he alternated between playing in his wagon and sleeping. He slept till 8 a.m. He took a 3 hour nap. After a week of sleep deprivation in the PICU, a nice, quiet dark room was just what he needed to finally rest. And a comfy wagon and access to lots of new toys sent as birthday presents back with Brian were just the right incentive to walk from his bed and sit up just a little more for a while.

Have I mentioned that Patrick has me read and then studies carefully every single card we receive. And thanks to all the cards, banners and gifts, his hospital room already looks quite homey and comfortable.

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For Brian and myself, today was moving day. We checked out of the room we’ve been staying in on hospital property and moved to the Ronald McDonald House. Even though it’s a bit farther from the hospital, walking in felt just like home.

After moving our luggage upstairs, we made a stop at a grocery store. I have never bought so much pre-prepared food in my life. However, it just make so much more sense to do this than to keep paying crazy high prices to eat in the hospital’s cafeteria. What we spent today would have covered maybe 3 or 4 meals at cafeteria prices. We’ve got a fridge in Patrick’s hospital room and there’s a mini kitchen on the unit, so it is easy to keep food there.

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I was also very excited to discover that the grocery store closest to the hospital happens to have a moderately sized allergy friendly food section, including some of Patrick’s favorite safe foods.

And, well, that’s it. Brian is taking the night at the hospital tonight. I’ve come back to the Ronald McDonald House to unpack, do some laundry and have a night off. Patrick is so happy to have his Daddy back. So am I.

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How the Hoopes Family does bedrest

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

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

Nebraska State Capital
Nebraska State Capital

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

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

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

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

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

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

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

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And then we went for a stroll on the riverwalk.

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

 

 

 

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.

Seattle Checkup and a Miraculous Anniversary


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Transplant Pre-evaluation: Day 3

Tuesday morning found us back at Seattle Children’s again bright and early. Our day started in ultrasound. They wanted images of his digestive system and the central-line eligible veins in his neck. With so much to image, we had 3 hours scheduled with ultrasound.

Keeping a 6 month old still for 3 hours while goop is being rubbed around on his abdomen and neck is quite the feat. We went through every toy that I’d brought along… rattles, books, rings. In the end, the only way to keep his head still for images of his neck was to let him watch my cell phone’s media player. It was interesting to watch them map the flow of blood through his veins and to see his broviac line. Patrick was a big fan of the black and white images on the screen.

In the end, the ultrasound took 3 and a half hours, not 3, and we had to run to make our next appointment with the department social worker.

Because the transplant process can turn your life completely upside down, part of the workup is a meeting with the social worker. She asked a lot of questions about us to make sure that we were up for the task. We talked about our coping mechanisms, our family, friends and other support systems. She told us about programs in place that could help us like the Ronald McDonald house (as a place to stay during Patrick’s recovery), Angel Flight (for transportation to and from many doctor’s appointments in Seattle, and the Children’s Organ Transplant Association(a.k.a. COTA, a charitable organization that will create an account to save and fundraise for transplant in). The social worker will be our go-to person for a lot of the logistics of planning and paying for the transplant, which will be invaluable, as this is not easy or inexpensive by any means.

Because we were running late, the appointment with the social worker was divided in two to give us the chance to meet with the surgeon, Dr. Reyes. Dr. Reyes is an expert in intestinal transplant. He’s originally from Brazil but you’d never guess it from talking to him. He explained to us a little bit about how the transplant works. He also explained the difference between an isolated intestine transplant (intestines only) and a liver-intestine transplant. The first would be done if Patrick’s liver were still in good condition. The chances of rejections are a bit higher, but if the bowel were to be rejected, they could remove it and wait for another donor. The latter would be done if his liver is in bad condition. The liver, pancreas, and intestine would all be transplanted at once, still connected to each other. The liver helps to protect the other organs from rejection – but if it is rejected, then the chances of finding another donor before the situation becomes fatal are pretty slim.

We were surprised when he asked us if Patrick’s small and large intestines had been connected. We had been previously told this wasn’t possible because the small intestine was oversized and the large intestine was pencil-thin from lack of use. But Dr. Reyes thinks it would be very beneficial to connect these. Patrick has a good portion of colon left that could help absorb water so that fluid loss would be less of a concern for Patrick and we could perhaps feed him more. This wouldn’t eliminate the need for transplant, but would reduce some problems in the time we’re waiting.

After wrapping up with the social worker, we ran over to neurodevelopmental. There a developmental specialist met with us. She took a quick history while we fed and changed Patrick, then she did her evaluation. This was probably his favorite appointment. Basically, she played with him to see what he knew how to do. The funniest was when she was testing his verbal repetition. She’d say “Aaaa…. Now your turn” and he’d respond by blowing raspberries back, since he’d just learned to repeat that sound and was quite proud of his new skill. In the end, her analysis was that he lacks some muscle tone, but that he is developmentally right on target for his “adjusted age”… meaning you subtract 3 weeks from his age because he was born 3 weeks early and he’s just where a 5 month old would be.

Our last appointment of the day was with Dr. Horslen the gastroenterologist. Dr. Horslen is one of the best known gastrointerologist in the world of short gut syndrome. He is from England and just transferred to Seattle from the very established program in Omaha, NE. He is oozing with British-ness. Patrick was finally napping by the time we got to that appointment so he slept while we repeated Patrick’s medical history again. Then Dr. Horslen examined him and he woke up and gave him a big grin. Dr. Horslen labeled him a charmer from the start.

Dr. Horslen told us that he and Dr. Jackson (our GI in Utah) have known each other since Dr. Horslen first arrived in the U.S. and said he respects him very much. He is very willing for the 2 of them to work together as a team. He did go on and tell us what changes he’d make if he were treating Patrick in Washington. 1) He said he’d reconnect Patrick’s intestines. (Which made us happy to hear… we’re excited about this possibility.) He explained that not only would Patrick have less water loss this way, but that the stoma can start to bleed uncontrollably as the liver fails… something that there’s no real reason to put Patrick or us though. 2) He suggested that we follow some of the suggested changes in diet and TPN. 3) He said he’d replace Patrick’s lipids with Omegaven (a topic I’ll have to cover in another post). They’re doing a study at his hospital and he’s allowed to distribute it in the state of Washington. 4) He’d do a contrast study of Patrick’s intestines… (Also to be explained later)… basically, take some images to see what’s there.

Then he threw in a 4 that we’d been expecting since the social worker ran into us at dinner and accidentally let it slip… He needed to see Patrick’s bloodwork right away to know what else needed to be done… And since Patrick was VERY anemic… He’d admit him to the hospital that same night so he could have a transfusion after the blood was drawn. They had a room ready for us to be admitted that night.

Now, in the interest of keeping this blog readable, for it’s length… and just for the fun of the suspense… I’m going to leave you in that cliffhanger until I find time to write again.