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

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

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

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

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

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

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

image

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

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

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

image

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

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

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

So it’s different, but it’s home.

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

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

image

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

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

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

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

image

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

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

We left the mall and went for a walk around Temple Square. If you’ve never seen the gardens at Temple Square around the time of LDS conference you should, Especially in spring. They are amazing! Tulips and fountains and pansies and flowering trees raining white petals everywhere.
image

Patrick did what all little boys do… walked the borders of every fountain and ran away and climbed up into the bronze statues.

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

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

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

image

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

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

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

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

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

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

 

A transplant recipient’s guide to Omaha on a budget

I never blogged about our “vacation” days in Omaha. See, insurance pays for Patrick and one parent to travel for care.. but if daddy comes, too, then we worry about airfare costs and sometimes that means staying a few days. We were  beyond bored of our usual Omaha/Ronald McDonald House activities. So Brian declared that we should make it a vacation and try to find new things.

Sometimes circumstances lead you to discover things you might not try otherwise. Like today I had roasted red pepper hummus, veggies, saltines minis and chicken nuggets for lunch.. something i may not have ever planned for lunch if not for short gut and oral aversion and food allergies. But back to travel. Brian did his homework and here are a few discoveries.

Old Market

One of the things that you may not guess about our family because I’m not exactly fit is that we are a fitbit family. Especially on vacation. Brian loves to walk. I love to walk with my family. And so we walk. So of course, when we arrived in Omaha, after unpacking and dinner, we went out for a walk. We heard often about a place called Old Market when we were living in the city. But it was brutal winter and bitter cold for walking and we were too poor and immunocompromised for eating out. So we didn’t go.

Visiting Old Market was high on our list going back. It’s a pretty nifty few blocks of downtown Omaha. Lots of dining, some shopping, and on every other street corner, a musician. Not the creepy of musician begging on the street that you aren’t sure if you should cross the street. Just honest to goodness musicians with their instrument cases in front of them. A drum line. A girl in a flowy white skirt hula-hooping to her friend’s music.

Patrick was in his adaptive stroller and we learned that the combination of cobblestone roads and staircases made this the trickier way to explore the street. (Most businesses had ramps on one side, but few had them on both.) But it was a fun adventure nonetheless. Maybe someday we’ll have time and money and healthy immune systems and we’ll find a place to eat there. A few caught my eye.

http://www.oldmarket.com/

Henry Doorley Zoo

Omaha boasts one of the world’s  best zoos and, though we visit every trip, we never feel we have seen it all. It changes with seasons and because the habitats are so real, the animals in view are always changing, too. We spent Thursday morning there in beautiful weather on their spring break, so crowds were bigger and we stuck to more outdoor exhibits, caught the seal training, walked around the rhinos.

http://www.omahazoo.com/

 Lewis and Clark Monument

Right before returning home in February, Patrick and I went for a drive. On a whim, I followed some historical markers and we ended up driving to a historic monument in the bluffs above Council Bluffs, Iowa. My little Utah heart that grew up looking down on the Salt Lake Valley from various vistas leapt for joy to find an overlook of Omaha. And I knew I needed to bring Brian back.

So, Thursday evening, when we had just enough time for a drive after dinner, I directed Brian up to the monument. His reaction was almost the same as mine. And of course, Patrick did what he did last time. He started exploring. He noticed a set of stairs and a little trail going off to the side of the monument. We resolved to come back and explore that trail. Because we grew up in the Utah mountains and that is what people who grew up exploring mountains do.

The next day, we packed a crazy little dinner of ham sandwiches and pringles and jell-o cups and we headed out in the late afternoon to explore. We set our watches and checked our fitbits to know how far we’d gone. And we started walking.

We walked around this sometimes steep, often narrow and overgrown but clear train that followed the edge of the bluff. And then we got to where we could see the trail led down into the subdivision at the bottom of the hill. And we turned around and we went back thinking that it was nice, but a bit of a bust.

On the way back, we learned that the actual destination was DOWN the bluff. Down a nice steep incline by the railroad tracks, at the base is a spring. So if you ever want to go hiking there and you don’t mind really steep trails, so explore. It was a bit too much for us with Patrick and my asthma that hates hills. At least this trip. But do go. Especially if you can go in early spring. That was the perfect weather for a hike.

We picnicked overlooking the city. Patrick ate most of his ham sandwich. As much as most other kids would have.

http://lewisandclarktrail.com/section1/iowacities/CouncilBluffs/monumentpark.htm

Strategic Air and Space Museum

Of course, morning were still nippy so we didn’t want to hike in the mornings. Instead, we took a field trip out to Ashland, NE to visit the Strategic Air and Space Museum.

My father-in-law is an engineer. He loves planes. My husband grew up loving planes. This is one he’s wanted to explore for a long time. And it was awesome to let him take his son and share that same love of planes.

The museum has two hangars full of planes, mostly old military planes. Brian can name most models by sight. His eyes light up as he tells me stories of what they were used for. Patrick loved peeking in cockpits and engines and playing with the flight training demo. Though he’ll tell you we didn’t let him ride in any planes because we didn’t have quarters to put in the little ride on planes they had. (You know, the kind you find in front of grocery stores.)

After spending the whole morning in the museum, we bought a parachute toy in the gift shop and Patrick and Brian took turns trying to get it to fly off in the wind on the front lawn.

Then, we went and found the entrance to the state park next door. Didn’t go in, but bookmarked it for next time. We took a little drive through Ashland itself because we love small towns and were hungry. Then we took country roads back into Omaha. Again, hoping to find a quaint little place to eat. But we ended up at Five Guys instead. After several days of eating kids meal hamburgers (Yes, you read that right. Patrick, started eating burgers this trip.) this was one burger Patrick had no interest in at all. Kids and their tastes.

http://www.sasmuseum.com/

Donut Stop

Have I ever mentioned that finding little bakeries is a favorite foodie activity of ours on vacation? Donut and cupcake shops hold a special regard for us, especially. So when Brian found an all-night donut shop in Omaha, he knew we needed to go. After our hike above Council Bluffs, we took a meandering drive to our room through that city. And, along the way, Brian declared we were in the right neighborhood for donuts.

I can’t really capture the essence of this place in words. It was NOT the seattle donut shops we have frequented. It opens in the evening and stays open all night till morning. The stop itself has two big display cases full of a decadent assortment of donuts. And behind the case, two little old ladies frosting trays full of donuts more for the night. Our order was rung up on an old fashioned cash register that popped up our totals on numbered tiles and dinged when the drawer opened. The walls were adorned with pictures and souvenirs from Hawaii and an abundance of pictures of cats.

It was one of the most quaint and unique bakeries I’ve ever been into. We all think the donuts were amazing. Especially Patrick, who suckered me into letting him have his cake donut with pink strawberry frosting on it, even though I knew his belly might complain later.

I’m sure we’ll be back.

http://www.yelp.com/biz/donut-stop-omaha

IMG_20150312_204755

Bob Kerry Pedestrian Bridge

Saturday morning, we drove through the traffic of a St. Patrick’s Day parade. We needed a less busy place to spend the morning and Brian needed some more steps. There is a bridge that crosses the Missouri River from Omaha to Council Bluffs. There is also a park on either side, both of which are worth a visit on their own. But our goal this morning was to walk across the bridge.

So, we grabbed some Taco Bell. (Waffle of the waffle taco was another hit for Patrick.) Then we bundled up against the Nebraska wind, put Patrick in his stroller and away we went. It was one of the colder days we experienced there so Patrick ended up wearing Brian’s hoodie.

It was fun and peaceful to be out for a walk above a river. Even if Patrick was in a grumpy mood and didn’t want us to hold hands or push his stroller one-handed or do any other number of things that made him feel out of control. After a week of walking, I knew I needed to do more walking when we got home. I was sore and tired. But it was fun.

And when we got to the Iowa side, we walked down in their park to the riverfront and let Patrick out to run for a little bit before heading back.

http://omaha.net/places/bob-kerrey-pedestrian-bridge

IMG_20150314_105952

Pizza in the park

For lunch, we met some friends at a park. It was one of the most perfect weather Saturdays of the year. The kids (with help from dads) played on the playground. And for lunch, we grabbed some pizza from one of our favorite unique-to-the-area pizza places, Mama’s Pizza. I highly recommend the chicken club pizza.

http://www.mamaspizzaomaha.com/

Pioneer Courage Park

Saturday, after enjoying an amazing roast pork dinner provided by volunteers at the Ronald McDonald House, we checked out of our room and moved to a hotel. We wanted breakfast and a smooth checkout since we needed to leave for the airport around 6 a.m. on Sunday.

We went to a hotel in downtown Omaha and, of course, after checking in went out for a walk. We walked past the ball park and arena and a mural that I don’t know how I didn’t notice was there until just this trip. The end destination was a place called “Pioneer Courage Park.”

The original address we were aiming for was a different sculpture park that we really need to go and see on another trip. But we found our actual destination almost by accident and were so glad to make it there.

Omaha was kind of a gateway for pioneers settling the American west. Especially Mormons. And many people know to travel back and visit Winter Quarters and the Mormon Trail Center. (https://www.lds.org/locations/mormon-trail-center-at-historic-winter-quarters). However, I think I’m going to add this park to my list of recommendations to those interested in that history.

This is an enormous bronze sculpture of a pioneer wagon train. Yes, a train. Several wagons. It is HUGE! You look across the street and there is a herd of buffalo across the street. As I understand it, go a little further and you’ll also find a flock of geese. Anyway, I have never seen the varied stories of the pioneers that settled the American West so completely and emotionally depicted all in one place. This sculpture was amazing.

And Patrick got to chase a bunny rabbit in the dark and jump off of slabs of rock. So we all had fun.

http://www.visitomaha.com/listings/First-National-s-Spirit-of-Nebraska-s-Wilderness-and-Pioneer-Courage-Park/57322/0/#.VRHXnI54rV0

We got back to the hotel and Patrick was greeted by the desk clerk with a gift bag full of toys. As we checked in, she asked what brought us to Omaha. She didn’t expect “transplant followup” as an answer. And she went out of her way to add some extra love to his day. People are amazing.

So – There you have it. How to vacation/staycation on a dime while immune compromised in Omaha, Nebraska. It was fun to come back to the Ronald McDonald House each day and tell the staff about where we’d been or where we were going and hear the interest in their voices about the places we were discovering that they hadn’t even been to themselves. It felt so good to be doing something DIFFERENT while we were there. Making some memories of our own choosing there. Kind of claiming the city for our own.

A different song

It is a beautiful spring morning. I’m lying in bed being quiet because Patrick is sleeping in and I’m trying to let him. The birds are singing outside my window. And in my kitchen, my cockatiel Max is singing along. He is singing the Andy Griffith song. For some reason, this has caused me quite some reflection this morning. I don’t know how cockatiels sing in the wild. I know that sometimes Max imitates the sparrows outside the window. He used to have the sound of the squeak of our worn out dishwasher perfected, too. But his best and happiest song is the one I taught him to sing. We are human. But we are his flock.

And I’m realizing that just because his song is different because his experience is different, that doesn’t mean that his song is any less happy or any less beautiful than the sparrow’s. In fact, to me it is more beautiful because it comes from our shared experience together.

I sometimes mourn the childhood that Patrick is missing. I wish he could get up in the morning and go to school with the other children. I wish I didn’t feel so inadequate and in over my head trying to fill in the gaps left by this ridiculous system they call “home/hospital education” that assumes that all children who can’t go to school for medical reason must be too sick to devote time to learning. I wish we could go to the places that other people make friends or that our old friends could come to us more often so he didn’t feel lonely.

But just because our world is different, that doesn’t mean our song is any less beautiful or happy. We are happy.

We sleep in, or we don’t. We get up and get Patrick and bath and start a load of laundry because night always gives us a full load to wash. We see daddy off to work with love and silliness. We decide if Max gets to take a shower with me.

Mornings are Patrick’s best independent time so I try to use that time to get things done around the house. Yesterday, it was devoted to precooking the chicken and sauce for chicken parmesan we were making to take to a neighbor for dinner. Patrick played on his tablet and I listened to an audiobook while I puttered around the kitchen. Other days it’s business for me and I’ll submit or review medical claims, call providers and insurance, or schedule appointments.

Then we run any errands that need done. Sometimes that means shopping at the store with kid sized carts where Patrick will run into the backs of my legs a dozen times and get put in a time out in my big cart at least once because he’s gone into total sensory overload and can no longer hear and follow my directions.

We fit in mommy school at some point in the day. Sometimes early. Sometimes late. We practice reading and writing. Sometimes we make a craft. Yesterday because it was St. Patrick’s day we emptied Patrick’s piggy bank and practiced the names of all the coins. And we’ll find some food to count and add and then eat. (Lucky charms marshmellows were a bit hit.)

We take our time eating lunch as its my best feeding therapy time. Patrick gets to pick and I add something to push his limits and we practice taking bites and swallowing together. I was beyond proud yesterday that Patrick actually requested the food we introduced for feeding therapy last week… beef and vegetable soup. And he ate the carrots and potatoes out of it as well as a grilled cheese and 3 handfuls of “oystey” crackers.

Then Patrick will avoid complying with the naptime that he’s spent hours telling me he’s so tired that he will for sure need today. If we’re lucky, the phone doesn’t ring in this time.

Eventually, he’ll take a nap. After months of practice, I’ve finally figured out how to make this one happen without tears and lost tempers. I rub Patrick’s head, but only if he’s lying still and quiet with his eyes closed.

Sometimes, I need to lay with him while he sleeps and I’ll use the time for scripture study. Sometimes I can sneak out of the bed and get things done. If I get out of the bed, he sleeps longer.

Then we’ll make dinner. Patrick is totally into wanting to learn to cook right now. Yesterday, he willingly snapped a whole package of green beans for me. Then he rubbed his eyes because they were tired and they got all red and puffy and I’m wondering if I can let him snap beans again. Other times he helps me measure and pour ingredients.

Brian gets home earlier now than he used to, which is nice. We’ll have dinner and then the evening is usually devoted to quiet family time. Patrick will watch a show while I clean up the kitchen and make formula.

I’ve learned that he medications make his belly move so we’ve started to give some of them a bit earlier so Patrick won’t be calling me to change his diaper half an hour after going to bed. That’s ok. Sometimes that waiting time can even be story and cuddle time.

And then Brian and I usually get a little bit of time together before we go to bed ourselves.

Patrick and I are starting to really enjoy each other. We are working together better than I remember ever before in the past. I really think his ADHD and sensory issues, though sometimes aggravated by the steroids, are less pronounced since transplant. (Perhaps because his nutrition is better or because he feels better or just because this whole experience made us all grow up.)

Yesterday I tried to explain the rules of St. Patrick’s Day to Patrick. Only he got all caught up in the pinching part and missed when and why. In fact, he became convinced that he needed to pinch everything green all day. Especially me. Pinching back 7 times only reinforced the fun and we had a silly giggly day of pinching each other all day long.

So its a different song. And I think there will always be times that I wish we were sparrows. But that doesn’t make our song any less happy or any less beautiful.

Transplant Day 132 and a follow-up visit in Nebraska

I am writing from the window seat of a room in the Omaha Ronald McDonald House. Today marked 1 month since they told us that he could go home to Utah. And so, today, he had a follow up visit to see how things are going.

It’s been an interesting few days. First of all, can I say how much it broke my poor little brain to try to pack for this trip? Travelling with TPN was hard. It took lots of big luggage and days of coordinating Fedex deliveries and special planning and packing for airport screening. In the past, I brought every suitcase we own packed to the 50 lb limit and also have at least 4 boxes shipped. This time, well, what I needed to bring was not iV supplies. It was formula. And food. I had to pack snacks.

i got everything gathered to put into suitcases and I looked around and I had too many suitcases. And the problem flustered me so much that I had to just go to bed and sleep on it. I had nightmares about not being properly packed. Then, I got up in the morning and I filled the extra space in one suitcase with pillows and blankets and I decided that we didn’t really need one bag as a diaper bag and another one to carry my electronics and medicines. And none of the bags weighed over 40 pounds. And it was all ok.

In fact, it was easier to get to the airport. Brian had flown in and out of this city enough times to know which flights would be fuller and have a busier airport and did a great time picking us a slow time in the airport. Patrick and I donned masked. (I wore one so Patrick wouldn’t feel so alone).. and i gave him a new pair of touch screen capable gloves. And we strode into the airport not struggling under the weight of overfilled bags.

Brian also had applied for TSA precheck status which meant screening for him and Patrick went much more easily. I still had to go through a regular line which felt, well… very strange. To leave them and go off on my own. But things were simpler. Patrick’s many medications had to be checked in the mass spectrometer.. but that is so much simpler than checking a cooler of IV fluids that they still were done by the time I got to them. They’d have beaten me had they not decided to let Patrick be screened in his wheelchair/stroller.

The flight was difficult. Patrick really has a hard time not playing with the window shade and keeping his feet off of the feet in front of him. Under normal circumstances, you can redirect this. But his steroids make it very hard to change Patrick’s mind once an idea enters them and we had a few stretches where I just had to hold onto him to keep him from hitting the seats around us until he settled down. It wasn’t all that way, though. He ordered himself a “diet water” from the flight attendant and had a happy snack time and we played with stickers and some mommy school games I’d laminated and brought along. Patrick’s desire to learn still overpowers most other things. And thankfully, the flight was only 2 hours anyway.

We rented a van and drove to the Ronald McDonald House. It was strange to be back and feel so at home here. Before out of state clinic visits were big adventures in new places. Now, well.. this is just a second home. Patrick, in fact, loves pointing out that we are coming home when we come back to the Ronald McDonald House each time we do. He is very mad at me that we are not restocking the fridge with his favorite foods and are eating out instead.

However, I like him eating out. He figured out he likes hamburgers last week and I love seeing him eat half of a hamburger plus some fries when we get him a kids meal.

We are aiming for a more vacation-like trip. Last night we went out and explored a shopping district called Old Market that we heard about but didn’t brave in the cold. It’s kind of a cool atmosphere. Like a toned down Pikes Market in Seattle, but with fewer people. And well patrolled by police. They allow street musicians, but not others begging on the corner.. so you could enjoy that ambiance of that little addition. It is warm here and nice to be out.

We did stop at the store for a few snacks and staples (and some sugar-free soynut butter that I haven’t been able to find in Salt Lake). And we stayed up snacking while waiting for meds time, even though Patrick was far too tired and overexcited about being here.

Today’s been a really nice day. In the 70’s, so we have been able to be out in short sleeves. We have never caught nice weather in Omaha before. We got up with the sun, as Patrick always does.. and made it out to go to the zoo early. We really love this zoo and find something new each time. This time it was the otters that caught his fancy. He didn’t like the sea lion training, though we did. And he was tired and wanted to go back to the room early, but we didn’t let him.

I’ve been tired today. At midnight last night, as I refilled Patrick’s formula feeds, I noticed that I’d left the charger for his feeding pump home. And I tossed and turned worrying about it all night. Trying to think who I could borrow from and what it would take to get homecare set up again in this city for just a few days. It was top priority this morning. It wasn’t hard to fix. I made a call to our homecare company who said that they often will lend chargers to people in a similar situation. So I called Children’s Home Health, the company we used while we were here, and explained the situation. They said no problem and to come pick up a pump. I signed a form saying we’d pay if it wasn’t returned and they gave me an envelope to return it in since they won’t have open offices the day we leave. And that was that. Easy peasy and why did I worry so much?

Oh well..

Patrick’s clinic appointment was this afternoon. That was also easy peasy. We checked in and there was some confusion about insurance now that we are more than 3 months after transplant.. but they voted in the end to leave that for the financial folks to sort out. We weighed Patrick in and he’s gained again.. and even 22 kilos, or almost 50 pounds.

The doctor we saw today was the surgeon who did Patrick’s transplant, Dr. Grant. This made me very happy. Not only does she, literally, know him inside out but we really seem to click as far as philosophy of care. She said that he was doing remarkably well and to keep on this same path. They were happy to hear he was eating and the dietitian adjusted his feeds again so that he’ll have 8 hours without tubes in a day… I had to promise to keep him drinking in that time so he stays hydrated.

Dr. Grant asked what we were doing about school. We confessed that we hadn’t dared send him back yet and were setting up home school instead. She actually seemed pleased with this answer.. she kept saying “It’s only been 4 months.” Pointing out that it’s easy to overlook how new this all is because he doesn’t have an ostomy or a feeding tube in his nose as most kids do this short time after. She started out recommending summer school or back to school in fall.. then conceded that maybe sending him back sometime after spring break so he can finish this year with his same friends and teacher would be a good idea.

After his physical exam, she pointed out some stitches we could have removed next time he’s sedated. And she said that she doesn’t think he still needs any physical restrictions. Monkey bars here he comes.

And then she said the words we’d dreaded. “So what do we do with this central line?” I decided to just speak my mind. I told her that we were ok with him not needing a line, but worried removing the one he has given how hard it was to put in and the chance of losing that access. I said this once before to another surgeon and was told I was being overly conservative. But Dr. Grant suggested just what I had imagined as the best solution in my mind: A port. This is a central line but one that stays under the skin except when it’s needed. There’s a small disk that can be accessed with a needle.

The nice thing about it is that it isn’t as prone to infection as a broviac line. It won’t need a dressing and he’ll be able to bathe and swim and get dirty.  Also, it means that Patrick’s labs will be easier to draw and less painful, since they can numb the site. The disadvantage is that it’s still a central line and runs a risk of infection and needs careful monitoring for fevers.

We made a plan to come back after the end of the school year and have them change Patrick’s broviac line for a port. We’ll leave that for a little while longer till we know it’s safe, and then remove it.

We won’t need to come back to Nebraska until then. Oh, and labs can now be once a week.

So overall.. still good news.

And now it is on with our mini-vacation. We have had a snack and a nap and are now headed over to the hospital for movie night.. then back here where some nice church ladies are cooking us a turkey dinner.

I don’t want to delay the fun, so pictures will have to come in a later post.

Transplant day 125 and something is brewing

I’ve been saying for days that I needed to blog. But it’s been a doozy of a start to a week. I’ll take my pictures from last week, which was much funner, and tell those stories in the captions.

A week ago Wednesday, we snuck away to a hockey game. We gave up our usual center ice seats and instead snuck into the upper level where tickets aren't sold. This means we had the section mostly to ourselves.. much safer.

A week ago Wednesday, we snuck away to a hockey game. We gave up our usual center ice seats and instead snuck into the upper level where tickets aren’t sold. This means we had the section mostly to ourselves.. much safer.

Sunday, Brian made a comment to me as I got home from church about how many diapers he had changed for Patrick while I was gone. I thought, “Oh, we’ve had a lot of that lately” and didn’t really listen. It was a busy day. I’d been at church for 3 hours and we had decided to stay home that day and invite some friends over for dinner last minute. So while Brian was turning out a roast and roasted potatoes, I was throwing some bread in the breadmaker and trying to get Patrick to nap. And, well, I didn’t think of it again.

Until the next morning when Patrick’s nurse checked his temperature while I ran upstairs to grab some supplies to draw labs. I came downstairs to him telling me, “He doesn’t have a fever, but his temperature is a bit high. You might keep an eye on that.”

But Patrick wasn’t complaining. He just needed a lot of diapers changed. And we’d just changed his formula to be a little more concentrated so it would run over less time and I thought that was all that was up.

When it was naptime, though, I checked Patrick’s temperature. To do this, we always check ours first to be sure the timpanic (ear) thermometer is working. And, well, Patrick’s temperature was still 99.6. But mine was 100.4.

All through naptime, Patrick’s and my bellies gurgled and talked to each other. By evening, I was feeling pretty darn sick. Apparently stomach bugs know how to get past our germophobic defenses.

 

 

Knowing Patrick had been feeling a bit stir crazy, and also knowing it wasn’t wise to go out, I’d embraced Dr. Seuss’s birthday wholeheartedly with books and themed activities for mommy school. I’d promised Patrick a dinner of green eggs (jello eggs) and ham. So, sick or not, I threw on a pair of gloves and still got dinner on the table and prayed that was enough to protect anyone who needed it.

The night was rough, but at least I was already up to be able to watch to be sure Patrick was ok. By morning, I was a bit better, though exhausted. Patrick’s temperature was down. His Monday labs had shown elevated liver enzymes.. an early sign of illness.. and there were some small hints of dehydration. I saw this online on Monday, but because Patrick’s prograf levels were late posting, I didn’t get to talk to his doctor until the middle of the day Tuesday. We decided that if he wasn’t seeming sick, that we’d wait and check labs again on Thursday.

At 11:45 a.m. an alarm went off reminding me that Patrick’s new feeding therapist was due to come. Oops. I probably should have cancelled. But knowing that I was taking super precautions to protect Patrick and that stomach bugs aren’t airborne, we opted to go ahead.

Patrick grabbed my camera and took pictures of his room for me during the week. He is in love with his license plate collection. Cars+letters. What's not to love? Especially since they are sent to us from friends all over. His nurse brought him the logo off of a car, though and now he thinks he should collect those, too.

Patrick grabbed my camera and took pictures of his room for me during the week. He is in love with his license plate collection. Cars+letters. What’s not to love? Especially since they are sent to us from friends all over. His nurse brought him the logo off of a car, though and now he thinks he should collect those, too.

Amazingly, Patrick was a rockstar for feeding therapy. He ate, including swallowing, a few slices of lunch ham. And half of a soynut butter sandwich. Then he asked for hummus and carrots.. practiced biting and chewing the raw carrots (though still not ready to swallow those.)

Sure, it made his belly pretty unhappy. But Patrick only knows unhappy bellies and so he didn’t mind. And after she left, when I made myself a bowl of Progresso beef stew, he decided he wanted to join me in eating that, too.

Note the pouch in Patrick's mouth. We went shopping that morning and Patrick spotted these pouch baby foods. We had talked about trying purees with his feeding therapist. Patrick had seen his friends with applesauce and decided he wanted these. He had a "smoothie' in his hand for 2 days straight. Then I gave him peas. Now he won't touch them.

Note the pouch in Patrick’s mouth. We went shopping that morning and Patrick spotted these pouch baby foods. We had talked about trying purees with his feeding therapist. Patrick had seen his friends with applesauce and decided he wanted these. He had a “smoothie’ in his hand for 2 days straight. Then I gave him peas. Now he won’t touch them.

Yesterday, I finally was feeling better. Patrick got up in the morning just bouncing off the walls, though. He asked me if we could “do move our bodies,” our Mommy school code for getting gross motor exercise in every day. And then he asked if it was exercise class day at the library.

It was.

And knowing that he really, really needed to get out, we chanced it and went to Mommy and Me exercise time at the library. The teacher there has seen us through 2 summers. I made sure we arrived early so I could explain what he’d been through and she was super careful with him. He did pretty darn well, actually. Better participating than I’ve ever seen from him there. But about 15 minutes in, he was too tired to go on.

That was ok. We went and picked books. I let him get his first library card. And we went home.

IMG_20150303_145545

It snowed Tuesday. Patrick was so excited to play in it. Only his 2nd chance this winter. So on Tuesday, sick as we were, we went out and shovelled walks. Wednesday, he was thrilled the snow wasn’t gone. He declared we were making a snowman. And a snow elephant. And a snow gorilla. He went to sleep talking about it.

And I woke him while it was still warm. The snow was all crunchy from melting and refreezing and not at all right for snowman making. This got me off the hook for the other creations. But we did manage a little snowman. And because I had carrots to give it a nose, Patrick was more than happy.

IMG_20150304_163408

Today we both were finally feeling better. Patrick got up a little too early, but it meant we were ready for labs. I was going to blog first thing, but the internet was down. So we dived into mommy school instead. The theme of the week has been fairy tales and today we learned about The Gingerbread Man. Patrick is a little miffed that the main character of the story got eaten. He has a lot to learn about fairy tales. It was a good theme, though. I was able to squeeze a little more math in that usual.

IMG_20150305_122416

Patrick is really, really mad at the idea of addition. He doesn’t like the extra symbols. He HATES the word “equals” (or as he says it, “eekso”). But today, by using teddy grahams that he was allowed to eat as we did the math, he played along a little bit better. Plus, I said “1 plus 2 makes” instead of “equals” and that helped.

I’m trying to be patient waiting to get Patrick a teacher. Not that I can guarantee that it will even make a difference for him. I just worry that I am not making ground on helping him catch up after all he missed this year. I really wish sometimes I could send him back to class. I admire moms who homeschool and are able to make that work in a consistent routine. Today was a good day. Patrick gave me an hour and a half before he got restless and asked to outside and I declared “recess” and let him go play in the remnants of snow.

I was hoping better looking diapers would have meant also better looking labs. But Patrick’s labwork this afternoon still showed elevated liver enzymes, dehydration creeping upwards, and an elevated white count. I called Patrick’s transplant team and asked if we should change his formula recipe and they opted to add back in some extra fluid for the weekend. I am sad he needs it, but at least I won’t be as worried about dehydration. Patrick’s been doing great drinking water and powerade and eating popsicles, but I was still worried.

Meanwhile, as long as Patrick is still looking and feeling happy, we will just keep an eye out. They might do some blood tests for a few viruses on Monday. But hopefully, things will get back to normal.

Tonight was one of those nights where things just felt comfortable and happy at home. Our bird, Max, was in a really cheerful mood.. simply playing. Patrick snuggled up in my lap to play tonight. Max climbed up, too and let Patrick pet him. (This is a HUGE compliment from Max, who is fairly bitey.) Brian was in his chair playing with a new geek gadget. And everything was right with the world for a little bit.

People have asked if we have a new normal yet. Some days I feel like we have found a rhythm. But so far, nothing sticks for more than a couple of days. We are still figuring it out. And as long as there are looming follow-up appointments and the hope of Patrick starting school just around the corner and little medical enigmas lurking… Well, it’s hard to imagine we’ll be settled for a while yet.

Before this mad, crazy week.. my mom and dad took Patrick for the evening so Brian and I could go on a date. After all we've been through, it was nice to just be laid back. We went bowling, had ice cream for dinner, then went to Home Depot and bought a mailbox.

Before this mad, crazy week.. my mom and dad took Patrick for the evening so Brian and I could go on a date. After all we’ve been through, it was nice to just be laid back. We went bowling, had ice cream for dinner, then went to Home Depot and bought a mailbox.

Transplant Day 114 and settling in

IMG_20150221_080007

Patrick and Max rediscovered each other this week. Starting with this moment. Patrick got Max up in the morning and tried whistling for him. Max got it and started singing back.

Whew. It’s been a week that we’ve been home. In some ways, it seems like this week has gone very slowly. In others, it has flown by.

Settling in at home has been a lot of work. For one thing, our vanload of possessions from Nebraska didn’t fit into our new home. I will admit that I had more than one panic attack over the pile of boxes sitting in my living room waiting for me to clean out and make room for their contents. It seemed that no matter how hard I worked, there were always still so many boxes. We finally got the last of them emptied and put away last night. Too bad it took filling another pile of boxes with things to be sorted through and donated or thrown away. At least that pile is in the basement at the moment.

But unpacking, though it took the bulk of my physical effort, was only part of the job this week. I spent a good portion of Tuesday morning sending e-mails and making phone calls. We get some reimbursement for Patrick’s travel home.. just some, but some is better than none and needs to be claimed.

And then there was homecare. It should have been easy to get homecare orders here. But our homecare company wouldn’t accept out of state orders. They had to be rewritten by Patrick’s doctor here. However, those orders got lost somewhere along the way. (And, research turns up, would have been incomplete anyway.) So Thursday morning was devoted to scanning my discharge orders and prescription medication lists, etc. and making phone calls to make sure that medical records actually arrived. Friday, a week after we left Nebraska and our last day of supplies, we finally got a delivery.

Labs with homecare nursing went a bit smoother, but I’m still not convinced that a copy of the results is being routinely faxed to the team in Nebraska.

Other projects included e-mailing Patrick’s school to start working on getting him an education plan, grocery shopping so we weren’t entirely dependent on others to bring us meals, talking to insurance to make sure preauthorizations were all set up, and getting a referral to feeding therapy.

IMG_20150221_080900

These two are now inseparable. Now that we don’t have to worry about Max biting TPN tubes, and Patrick is learning not to lock Max in random rooms around the house. Max only has to be caged when he gets bitey.

On Thursday afternoon, the weather was beautiful and Patrick was pretty burned out on watching mom unpack boxes and talk on the phone. So after I made it through the morning business, we decided to take a picnic lunch to the park.

Patrick chose some of his foods. Veggie straws and crackers. I picked more nutritious things, too.. Chips and guacamole, chicken nuggets, and an assortment of dipping sauces to experiment with.

Then, I let Patrick pick a park. He asked for the one next door to his school. We didn’t think about that it was by the school until we were there. Then he wanted to go visit his friends at school. School was just letting out and it was kind of hard to have to say no. Thank goodness one little boy came over to play. He wasn’t a best friend, but he was a familiar friend and then helped ease the pain a little.

So did lunch. Patrick ate and ate and ate. He discovered he likes veggie straws in ketchup, but wasn’t a bit fan of the chicken nuggets. That’s ok. As long as he tastes the new foods, I’m happy right now.

Friday we had our first post-transplant appointment with Patrick’s GI, Dr. Jackson. Have I mentioned how much we love that man? He scheduled us in on a day that his clinic was closed. He spent and hour and half making sure that he learned all he needed to from us and that we had time to ask all of our questions. Patrick is in such good hands.

We talked about making a plan for when Patrick gets sick to allow him to bypass the emergency room as long as his ABC’s (airway, breathing, circulation) are intact. We went over Patrick’s medications and new anatomy and diet. We asked about sending him back to school, and found Dr. Jackson to err on the side of caution where our hearts are more than the team in Nebraska does. (We really want to wait out cold and flu season.) He let Patrick be the doctor and check his heartbeat and eyes and ears as well.

The general gist of things is that Patrick is doing well and Dr. Jackson is committed to helping him continue to do so. And it was nice to be back with a doctor who loves teaching. I now understand why and how some lab results are followed.

One of the very rare moments when Brian got to join us for naptime and Patrick let me out of the bed. Usually, I lay with Patrick and read scriptures through his naps.

One of the very rare moments when Brian got to join us for naptime and Patrick let me out of the bed. Usually, I lay with Patrick and read scriptures through his naps.

And so, here we are. Tomorrow’s plan is to get labs, to change a central line dressing, to try to clean up the pile of boxes in the basement, to make a meal plan, to do some mommy school with Patrick, and to cook dinner (still a novelty for me.)

Oh, and to spend a LOT of time barefoot. I’ve had enough of having to wear shoes and socks to last me a good long time. If it weren’t for labs, I’d maybe even try spending the morning in pajamas.

———-

One more thought. A lot of people are asking rules for visiting Patrick. I really appreciate the caution about keeping him healthy. Here is what I’ve posted on the front door.

Our son recently received a transplant. Please help us protect his gift of life by keeping germs away.

Please advise us if you have recently had or been exposed to a contagious illness. This might include:

  • Fever
  • Runny Nose
  • Cough
  • Sore throat
  • Vomiting
  • Diarrhea
  • Rash
  • Pink eye
  • Nausea or dizziness

You may be asked to wash your hands, wear a mask and/or gloves, or reschedule your visit for another day.

Please do not visit if you have an illness or infection treated with antibiotics in the last 48 hours, or if you have been immunized with a live vaccine (Measles a.k.a. MMR, Smallpox, or FluMist) in the past two weeks.  Thank you for being immunized.

In other words..if you are actively sick or think your odds of getting sick are getting high, you might postpone your visit. If you’ve been sick and are feeling better, then ask. Good handwashing is probably good protection the majority of the time.

IMG_20150212_135003

Transplant Day 110 and Home

Home is a name, a word, it is a strong one; stronger than magician ever spoke, or spirit ever answered to, in the strongest conjuration. – Charles Dickens

I am blogging tonight from my own bed. Patrick is in his bed playing instead of sleeping. Brian is at the computer in his office. We have been home since Saturday. It feels good.

I’ve learned a lot about home in the past several months. I have learned that the essence of home: the part that’s made of love and family and faith and shared joys and struggles… that part is fairly portable. For we made homes out of a variety of hospital rooms and out of a small, overcrowded room at the Ronald McDonald House. Brian commented that coming back to our house wasn’t home. Home was where we were, and when it would come back to us every couple of weeks, it really did feel like it was home to be all together.

But there is something about us all being beneath our roof own homemade home together that is very comfortable. It is nice to not share walls with anyone. To not share a fridge or a kitchen or a dinner unless we choose to. It’s nice to let Patrick leave me and not worry about where he has gone.

Picking up and moving on under 24 hours notice is, well, stressful and crazy and very disorienting. After my last post, I had a horrible time sleeping. I’d wake up for something little and then lie awake for an hour thinking of all that needed to be done for us to go. None of us slept well. And when Patrick was up early, we just got up and got to work. We had accumulated a lot of stuff over the 3 and a half months in Nebraska and packing it up in an order that would make some sense and be accessible during the trip home was no small task.

We rented a mini van to bring it all home in. Brian called it “the more comfortable version of a U-Haul.” With stow and go seating, he just put the seats flat. And we filled it. And entire mini van.

We tried to steal some goodbyes. Patrick’s teacher came over and brought some gifts and read one last book with him. We met up with the friend from church who helped to organize all the offers of help and meals and such that came from them for a playdate. (Patrick pulled out his g-tube by accident and I very cooly popped it back in right at the park.)

And then, I got THE phone call saying that everything was supposedly in order and we could go.

So we finished loading the van and cleaning out the fridge and we checked out of our room and we started driving.

We went about a third of the way the first night.. crossing most of Nebraska. Patrick did a lot better than I expected. We packed the back seat with pillows and blankets so he couldn’t lose his toys and I passed him snacks as we went along. I put on my bluetooth headset so I’d be able to answer calls hands-free and turned on an Audible book and we just drove and drove. It took me some time to figure out how to manage cruise control while following but eventually got the hang of it.

We checked into a hotel in Sidney Nebraska around 9 p.m. We made a mad scramble to get Patrick’s medications and formula somewhat on schedule. Then we went next door the Perkins for dinner. It was the only restaurant in town open that late and a game had just let out so they were busy and Patrick was barely staying awake.. But he really wanted his ham and potatoes and toughed it out.

And then we crashed and the big comfy hotel beds just felt SO GOOD!

Patrick was up early again the next day and so we got up, too, and got bathed and dressed and meds done and then grabbed some breakfast. Right after the 9:00 meds were given, we hopped back in our cars and drove again. I finished one book and started another. We convinced Patrick to go ahead and take a nap.

IMG_20150214_084137

I missed the sign saying we’d entered Utah. I was too busy trying to catch up to Brian after some slow trucks and a steep canyon had separated us a bit. And then, as I caught him, I started to notice that I recognized what we were passing. We were almost home. And having to stop to go to the bathroom in Park City about killed me because I knew how close we were.

We arrived home about 7 p.m. on Saturday evening to find yellow ribbons tied to the trees (that made me cry.) The house had been scrubbed clean by friends that morning. There was dinner waiting in the fridge and balloons in Patrick’s room.

Patrick was thrilled to be home. He immediately emptied his toy box. Everything looked exciting and wonderful to him. And to me. Though, I’ll admit, I was a bit frustrated to find that I couldn’t remember where I keep things in my kitchen.

It felt so good to lay down in my own bed and go to sleep.

That is one of the most often asked questions I’ve been getting. Did it feel good to sleep in your own bed? Well, yes.. it felt good to fall asleep there. But sleep didn’t come easy.

See – Patrick hadn’t fallen asleep alone in 3 and a half months. When I kissed him goodnight and walked out of the room, he started to scream. He got more and more panicked and angry. He said it was too dark. Patrick has NEVER been afraid of the dark. But I guess that is the byproduct of all of the trauma that he has been through recently. PTSD is VERY common in patients who have undergone a major medical ordeal like transplant.

I didn’t know what to do. I didn’t fit in Patrick’s bed. And I didn’t think he’s sleep with his lights on. So I said a silent prayer. And then I went in. I sat down next to him and told him I knew he was scared to sleep alone. I offered to help him say a prayer. He fell apart sobbing. It was heartbreaking.

I let him settle down and then told him I was going to walk away for just a minute and I’d leave a small lamp on for him. Then I’d come back. I still didn’t know what to do.

But when I went back, I got him up and held him on my lap. I read him a book. I told him we could leave the lamp on. I went out to my car and got the hot pack bear that he’d slept with in Nebraska on cold nights and warmed it up. Then I told the bear to take care of him and help him be brave. And I kissed him goodnight. And he snuggled down and was asleep within minute.

And I said a little prayer of gratitude for patience and wisdom.

And then I went and slept in my bed which felt great. But at 2:30, when I filled Patrick’s formula and changed his diaper, I somehow moved my back the wrong way.

After months of sleeping on too-soft mattresses, my back wasn’t so sure what to think of a nice normal firm mattress. And I couldn’t sleep in my bed anymore.

So no, I didn’t get a really great night’s sleep in my bed the first night. I ended up sleeping on the couch until 5, when Patrick woke up scared and I went and picked him up and we slept in the recliner in his room together instead.

Things have gotten better, though. Patrick still needs to sleep with “Louie bear” (named after Patrick’s ostomy.. long story) and with the light on. Sunday night, he only screamed and cried for about 15 minutes. Last night, he slept without tears. And tonight.. he sat up and played in bed just like he used to do.

And my back only hurt for a couple of nights and then got used to being in my bed again.

Sunday I went to church. It was VERY strange to be back. I knew I’d get lots of welcome from lots of friends and was a little hesitant about the attention. But I was happy to see them and it was ok. I told Brian I didn’t know where to go during the sunday school hour. I wasn’t sure I wanted the spotlight of going to the adult class.

He reminded me that Primary (children’s sunday school, where I am the music leader, but an assistant music leader has been leading each week)…still didn’t have anyone to play the piano. I voted for that. And I actually had a really great time. This is, after all, my favorite job in the church. And I didn’t have any of the responsibility.. Just the fun.

We had visitors for most of the afternoon.. my parents, my sister. Then, we went out to Brian’s parents. His mom had made us dinner. Ham and potatoes, special for Patrick. I remembered that I hadn’t heard anything about labs the next day and ended up making some phone calls to peacemeal something together.

Patrick’s nurse did come Monday morning. We slept in a bit and were barely ready on time. It took some time to update Patrick’s chart with all the new meds.

Because Monday was President’s Day, Brian didn’t have to work. We went out for breakfast.. I have missed Kneader’s french toast so much. It was yummy, though we established that their staff is either unwilling or incapable of making toast without butter for Patrick. Oh well.

Brian’s body was screaming that he needed a down day. So he took the job of supervising Patrick, who was still nostalgically exploring all of his toys. Meanwhile, I dove into Patrick’s room. We no longer need the drawers and drawers of IV supplies that we were using to give Patrick TPN. However, he does have a lot of new medications that we get 3 months of at a time. And he needs tube feeding supplies.

I worked all day, listening to Audible as I worked. And 3 boxes and a giant garbage bag later, I’d cleaned out the old supplies and moved in the new stuff.

That’s how the past few days have gone. Patrick and I try to get out part of the day to let him ride his bike or drive his car. The weather is like spring here right now… crazy coming from bitter cold Omaha… and so we only wear light sweaters outside.

But the rest of the day, I mostly clean. A friend came over and helped me clean out Patrick’s closet and his cupboard of craft and homeschool stuff in the kitchen. Today, I went through all of his toys and pulled out the old and broken stuff to make room for new. I filled both of our garbage cans. I have piles of boxes in the basement to donate. And I am maybe a little over halfway done with moving back in.

This is moving out of order. Usually, you clean out when you move out. You don’t move out, buy all that you want, then move back in and have to clean to make room for it.

Thankfully, being home means being surrounded by friends and family and help and meals just keep coming. I haven’t made an entree yet. And that has given me time to work.

I’ve also spent some time working on the business side of moving back home. There are claims to cover the cost of transportation to sort out. And there is getting homecare set up here. For some reason, that still isn’t done and I hope they figure it out before I run out of ethanol locks on Friday. (Thankfully, I received our month’s shipment of all the rest of our supplies right before we left Nebraska and that means no time crunch.) There are follow up appointments with doctors. Patrick’s GI, Dr. Jackson, has been great about being available to help us transition back. And figuring out how and when to go back to therapy. And e-mailing Patrick’s school so they can start working on all that it will require to get him back there when the time comes, which might involve hiring even.

It’s been a full week. But it is so, so good to be home. The stress is just what needs done and trying to keep Patrick entertained. Not the stress of being alone, but not alone.

I love the Ronald McDonald House. What would we have done without them? But there is nothing like being just here as our family and not needing to worry about anyone else. About knowing that we can pick up the phone and just call if we need something. About knowing where things are in the grocery store and what they should cost. And not getting lost trying to get to or from places.

I don’t want to let this blog drop and I’m sorry it’s taken me so long to get back to it. I don’t think well when I’m cluttered and all these boxes and suitcases have me feeling very cluttered.

But I know this journey is still just beginning.

Not only that, but I still have some things I’ve learned to tell you all about. Next time. Tonight, I’m gonna go snuggle up in my bed and go to sleep.

IMG_20150216_154912

 

Transplant Day 104 and Big news in clinic

Patrick had a clinic appointment today. Brian actually got to come with us. (Yes, the team cleared him and his cough.)

It went about like this.

We arrived and visited with all of our transplant friends in the waiting room because it was transplant clinic day. They called us back and grabbed a set of vitals. Then they showed us to a room.

Patrick, who stayed up early, got up late and didn’t nap proceeded to run around the room getting into everything he shouldn’t.

The nurse coordinator came in and went of Patrick’s medication list and asked us if we had any new concerns. I think we told her we wanted to follow up on the suggestion that Patrick might be allowed home this month.

She left. We moved all the gloves up high on the wall so Patrick couldn’t play with them.

The dietitian came in and we talked about Patrick’s current diet and how he’s tolerating feeds. We discussed how much he’s eating, his upset stomach of the past 2 days, and what the next step for feeds would be. She also told us that we could change his rate when his gut settles down to give him a 4 hour window.

Then I asked her what her goals and criteria were for him. What she wanted to see to feel like he was doing well enough to go home. She said he seemed to be doing really well. He’s gained 5 pounds since transplant. He is continually doing better with eating.

She said that, from her perspective, he is ready to go. But that she doesn’t like being the one to make that call. Then we talked about how diet would be managed once Patrick was back in Utah.

She left. Patrick’s behavior went bezerk. We put him in time out and he started throwing a major tantrum.

Then the team came in.

It was not surgeon we’d heard was running clinic who we’d hoped to see. I thought, “well, maybe we won’t discuss this this week after all.”

Thankfully, Patrick settled down. He said the phrase we’ve been rehearsing with him. “I want to go to my home.” They kind of didn’t answer.

So I told the doctor about Patrick’s strange gut this past few days and how I wondered if it was something he ate or the leftovers or Norwalk. Then I asked if the labs looked good, thinking that maybe I was being overly optimistic. Nope. Patrick’s labs look great. No dehydration. Even with things seeming off, he’s in a good place. His Prograf level needed a slight increase.

Then the nurse coordinator turned to the doctor and asked, “So the big question is, can they go back to Utah?” And you know what? The doctor said yes.

I can’t remember his exact words. I was so stunned. Basically, he knew we’d discussed it in rounds several times and knew what had been offered and that Patrick was meeting those goals.

So, we asked about logistics like setting up homecare and planning for Patrick to go back to school. (That answer scares me. They said to start planning for him to go to school. I am trying to figure out how to wait out the last of cold and flu season.) And I asked a couple of my other random questions.

And the nurse coordinator said she’d call me tomorrow. And they said to come back in a month.

And that was it. We walked out feeling like we’d cheated the system somehow.

So we are working on plans to go home. We’d like to leave tomorrow afternoon if we can to stay ahead of a storm that’s due to come in. That would put us home Saturday night or Sunday Morning. We are renting a van to take stuff home in and I will drive Patrick in the car.

Brian planned the trip. I called the insurance and Patrick’s doctor back home.

We celebrated valentine’s and Patrick’s sealing anniversary early by going out for dinner.

We went shopping for snacks. Then we packed up all our clothes.

We never count on something promised to us without expecting things to go wrong. It is possible that homecare won’t get arranged and we won’t be able to leave till after Monday. Or that Patrick’s gut really will be sick, not just confused by so many cheerios. Or the weather will turn bad. Or something.

And it’s kind of taboo to talk about going home until you walk out the door. So we aren’t coming home yet. We are just making plans to come home.

What a surprise.

Patrick and the Omaha Lancers Hockey Team

Transplant Day 102 and Snow boots

I was almost going to put off writing one more day. Then I thought, “Well maybe I’ll send a short update out just so people know we are ok.” Then I pulled up the blog and realized I haven’t written in almost a week. So I’m going to try my best to post a quick blog. I am very VERY sleepy so this may not be my best.

Things are good here. Patrick’s belly finally has been seeming settled. On Sunday I turned up Patrick’s feed rate without it making him sick overnight.. a first since he got sick and a sign that he might finally have beaten the virus. However, the diaper I changed just as I put Patrick back to bed has me questioning my confidence in that notion and we’ll see what the night brings.

We’ve been working on finding our rhythm again this week. I mixed up the routine a bit this discharge. I realized that it wasn’t worth the struggle of trying to do so many things outside of the room. It just means more exposure for Patrick. And more time spent tracking him down when he wanders or telling him to stay out of things and more bad feelings between us.

He was so happy to be back at the Ronald McDonald House. So happy to be able to play without rules with his choice of toys. The first couple of days he didn’t want to leave the room. So I started making formula here in the room instead of in the kitchen. And I started drawing up his morning meds at night and putting them in the cooler I keep in the room so I don’t have to go get them in the morning. And we don’t go out as much. And we are both cool with that.

Patrick trying on my new hat and scarf.

Patrick trying on my new hat and scarf.

But we have had some fun, regardless. Friday, Child Life at the hospital arranged for a mini carnival and haircuts to be held at the same time. So we went over and got Patrick and myself much needed haircuts. And while it was my turn, Patrick got to go into the room next door and play. Then, he got to pick carnival prizes. Only he didn’t just pick for himself. He got gifts for Brian and me, too. He picked me out a bottle of lotion which, really, is the first time I think I’ve ever had him pick a gift for me and struck me as very thoughtful. He picked hoop earrings for Brian, but then noticed a Rubix cube and changed his mind. For himself, a book light that we use every night to read his picture scripture stories.

Saturday, we got together with a friend that Patrick made here at the hospital. They are staying in the Leid, a hotel attached to the hospital. His grandma and I have been watching for a chance to get them together. So on Saturday, I invited them to come play in the snow. We had a foot of snow, but it was 45 degrees and starting to melt.

So, in the morning, Patrick and I ran out to Shopko and bought some snowboots and waterproof gloves on clearance. We also picked up some snow dye bottles. And then we had a McDonalds happy meal together. (The little boy is here doing the intensive feeding therapy program so we thought that eating together might be good peer support for both boys.) Then we went out and played in the snow for several hours. We built a snowman. Patrick’s friend then said we needed a snow elephant, so we built that, too. I dug a box out of the recycling bin and we helped the boys sled on a little hill and they laughed and laughed. We made snow angels. We threw snow at each other, but not snowballs because our perfect packing snow made killer snowballs. A family in the house from Tennessee kind of timidly came out to play, too. I think the moms had as much fun as the kids.

And then, by the end of the day the color had all run off our snowman because of the heat and by the end of the next day, he was just a little pile of snow.

Another treat is that Patrick can take baths again. Since transplant, baths have been very limited and often forbidden. With an ostomy, they were possible but had to be short. After takedown, he had an open incision for almost a month. In the hospital, I only do sponge baths. So to be able to put him in the tub and let him play is a treat for both of us. He’s had a few 1 hour baths. One morning, I just put all the towels in the room on the floor to catch the spills and splashed and let him go.

IMG_20150205_080724

So much has changed for Patrick. It will be a lot to get used to when he comes back. He is eating like crazy these days. I’ve started to let him have snacks to just graze on. I put the in the disposable coffee cups that the house provides. So he munches on cheerios while we drive. I have cheerios in my seats. Who knew I’d be happy for that little milestone one day?

IMG_20150207_104849

On Sunday evening, I packed him a cup of veggie straws and we went for a drive. He finished his cup after 10 minutes and asked to go back home for more. I didn’t oblige. Instead, we went to drive across the “Mormon Bridge” just cuz we’d heard about it. Then, as I was driving back, I noticed signs for the “Lewis and Clark Monument” outside of Council Bluffs, Iowa. So, we went over there. Arrived just as the sun was setting, reflecting in the Missouri River. Being in a state park, on a hill overlooking the city.. felt a bit like home. Patrick was just happy to wear his snowboots and stomp in snow and mud.

Patrick also snacked on Cheerios all through our Primary lesson this week. We were looking for a room to do this in and found the Sunday house staff member resting on the couch in the room we usually use because her back was out. Patrick just snuggled up next to her and watched her show and ate Cheerios. Then, when her show ended, I told him it was time to do his lesson. So he asked her to join us. She obliged and it was very sweet, and kind of nice to get to have someone else listening as we talked about Jesus and his resurrection and atonement. She even sang along with us. Patrick tried to make her say the prayer, but I persuaded him to teach her about how we pray and let her listen just this one time.

Anyway – I was saying… so much has changed for Patrick. He is growing up in so many ways.

He eats. Kind of all the time. It’s still new and most of what he eats is like what you’d feed a toddler still learning to eat. But he has discovered a love for ham and cheese sandwiches. He chews up and swallows the bread and cheese, but spits out the ham. The first time he did this, I was stunned. When a few days later I offered another sandwich, he said “Mmm. Yum!!” I think he just needs time to go through the developmental stages of eating. I haven’t taken him back to feeding therapy yet because I wanted to give him a week to get better and see what the doctors said in clinic this week. But we are moving the right direction.

He has realized that dirty diapers don’t feel good. Now, he knew this before, but his stool was very different before. It was all liquid and either had to be changed right away or absorbed completely into the diaper. This is different. So we get up and change him during the night if he goes. And he’s learned to go back to sleep after. (A HUGE step for him.) And when we someday can keep a routine long enough, I think we’ll be ready to start exploring potty training again because I think he finally has some control over that.

Meanwhile, this means I am very sleepy. It’s kind of like I have a newborn again. Formula has to be refilled every 4 hours because Patrick’s bags only hold that much. A bigger bag could be put on ice and not need this attention, but then Patrick would have to wear a bigger backpack. He has one, but he prefers the little backpack that doesn’t get in his way when he sits down. Between changing diapers and refilling formula, I am up every 3-4 hours during the night. This is why I don’t blog. I am so sleepy I crash when Patrick crashes. And since naps can mean insomnia, we don’t always make that up during the day.

Taking the snowy way because he has snow boots

Taking the snowy way because he has snow boots

He still chews on everything, but he’s given up paci’s. Ok, I’ll be honest. He tried to cave on that today. He found his pacifiers and asked for them back today. But I reminded him he had chosen to be a big boy and didn’t need them anymore. Then I grabbed the sewing kit and cut the paci’s out of his wubbanubs and sewed their mouths back closed. He was sad. He said he wasn’t a big boy. He was a girl. So he could have paci’s. So I grabbed a chewy tube and sewed it onto the hand of his monkey and told him that he was a big boy and his monkey could help him have chewies instead. This kind of worked and he is happily sleeping with his friends again tonight.

Patrick has also made tremendous leaps in language. His first/second person confusion is pretty well gone. And he talking more and about more grown up things. The other day, we had a really off day. We tried to nap and it failed and Patrick had a chip on his shoulder all day, and after fighting about nap, I did, too. Nothing clicked. He kept pushing boundaries. I kept falling for it and snapping at him. Finally, we got to the room in the evening and I sat down and just cried and told him I didn’t like fighting with him anymore.  He gave me a big hug. He told me, “I’m a tech.” This is the title of the medical assistants who check vitals at the hospital. I don’t know why this exemplified the most compassionate person he could be at that moment, but I understood that was exactly what he was offering. Then, he got up and got my Kindle and brought it to me and said. “Mom. Look at your Kindle. It calm you.” And you know what, he was right? We sat on the bed and I read my kindle and he played with his tablet and we were calm.

He is still in love with reading. I wish we were making faster gains. It’s really hard when school is only 1 hour a day, 3 days a week and we rarely make it a week without missing at least one day. But I’m trying. On Monday, I pulled out Patrick’s stack of sight word readers and my laptop and I told him that for every book he’d read to me, I’d let him play one game on SesameStreet.org. This strategy actually worked really well. Not only did we practice reading, but we played some educational games. Then, when he wanted more mommy school, I pulled out a little game we have with letters on dice and we built words to and then changed their first letters to find rhyming words. It was one of my better mommy school sessions.

Patrick often pulls out this bike and rides while I do the laundry

Patrick often pulls out this bike and rides while I do the laundry

 

And today, we just stayed in the room and cleaned out Patrick’s toys. It helped him remember what he had here so he wanted to play here more. It helped me organize some of what was overflowing. And it gave us a step in the right direction for daddy to come back tomorrow.

Brian has had a doozy of a trip home. He had meetings with a group from out of town last week and a couple of days in, one of them came down with a cold. Well, Brian caught it. And it took him down. He had to take a couple of sick days. When he was still running fevers after a few days, he actually ended up at the doctor where he was diagnosed with bronchitis and given antibiotics and a cough suppressant. But that didn’t mean rest for him. We decided that a last step to really cleaning up the house was replacing the carpet in our bedroom. So, still sick, he moved all of the furniture out of our room so that could be done Monday morning. Then, also Monday morning, discovered that he had a nail in his tire. Had to put on a tire and take it to be repaired.

He is a lot better, but his cough is still lingering so I get to try to reach Patrick’s team tomorrow to figure out if that means that Daddy shouldn’t be around. And then we have to figure out if that means postponing his trip or finding him somewhere else to sleep or wearing a mask all the time or what. This is another new thing for us. Navigating a contagious world with an immune suppressed family member.

It has led me to research into contagious period for certain illnesses. Someday, I’ll summarize that into a handy guide of “how long to stay away if you have been or might be getting sick.” For tonight, this was a handy little document. http://www.bccdc.ca/NR/rdonlyres/8061A728-C969-4F38-9082-B0296EF2A128/0/Epid_GF_childhood_quickguide_may_09.pdf Especially given that Utah is experiencing outbreaks of a few vaccine preventable diseases right now. I’m biting my tongue and trying not to blog about how scared I am coming back to this absolutely ridiculous problem. It’ll probably come out one of these days when I have time, though.

Anyway – I think I’m about out of stories worth telling. Well, maybe just one more. First of all, we survived a very long weekend of no dinner groups at the Ronald McDonald House. I miss the friendly group of families that was here over Christmas. The current group has a more every-family-for-himself attitude that I think has grown out of the panic of cold and flu season. Regardless, knowing that norovirus can be spread in food, I decided we’d better just cook for ourselves. I started to brainstorm dinner with Patrick the other night and he said, “I have a great idea! Let’s have chicken! Like at the hospital.” Well, I’d had KFC one night and apparently he liked it. But KFC was out of chicken and literally locked their doors that night. Odd. So we ended up getting a rotisserie chicken instead and I think we did pretty darn well with instant mashed potatoes and gravy made out of Patrick’s chicken broth. Patrick ate a ton and we were both happy.

Patrick and the Omaha Lancers Hockey Team

Patrick and the Omaha Lancers Hockey Team

But tonight, dinner groups are back. And we started out with a great one. The Omaha Lancers, a junior league hockey team. Not knowing they were coming, Patrick decided to wear his Avs (hockey) sweater today. So he gave us away early as hockey fans. And I’m sure he made and impression and won them over. He traced the player numbers on every team member’s jersey.. then spelled out the letters of their names. They made him pancakes and ham and toast, all current favorites, which of course won him over, too.

Ok. I am out of stories and really should get some sleep.

 

 

Transplant day 96 and snow days

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn't any snow on the ground.

A shot of the snow Monday morning after it snowed all day Sunday. Before this, there wasn’t any snow on the ground.

My phone rang at 5:30 this morning. It was a recording from Omaha Public Schools announcing a snow day. This is the second snow day of the week. Church was also cancelled Sunday. It is snowing. A little over a foot has fallen.

I am trying to decide if this is premature. The parking lot of the Ronald McDonald House has snowbanks 10 feet high where the plows piled snow. And on Monday, I barely got my little two-wheel-drive car to go up the hill on a road with minimal plowing. I’m not sure that this is more or worse snow than we get in Utah. But the roads are less safe for it. They are narrow. VERY narrow. With no shoulders or turn lanes and cars parked down both sides. Also, everything is very hilly. So, while I grew up on the edge of a valley and our hills might trap us at home while the rest of the valley could manage to get around. Here, you might encounter 3 very steep streets within a few blocks of each other.

I don’t blame them for keeping the school buses home.

It didn’t affect us much with Patrick inpatient. We just watched the snow out the window. Snow days have fewer volunteers and more staff that got stuck trying to come in and fewer child life activities. But we are cozy and warm and protected from the weather. We have lots of toys and TV and crafts and books.

The less snowy days have provided ample help. We had 3 volunteers come by yesterday, giving me hours to get away and grocery shop and clean and rest. The day before, child life and music therapy and physical therapy filled in because there weren’t volunteers and I got to go back to the house and do laundry and pack clothes for a few more days. With nurses taking care of the medications and diapers and formula if I happened to sleep through those needs at night, I’ve actually had a chance to mostly catch up on my sleep in the past 2 weeks.

And that’s very good news. Because this morning, Patrick’s nurse practitioner came in and said that adding extra fluid to Patrick’s feeds had caught up his hydration and she was going to recommend discharge. It took a bit longer for rounds to come around, and I still wasn’t getting my hopes up too much. The added volume that giving more fluids required had made Patrick’s belly gurgle and dump during the night again and I had just changed 3 diapers back to back so I was pretty sure they weren’t going to let us go.

They came around for rounds and asked about Patrick’s prograf levels and they were borderline high and I was almost entirely positive, especially since it was a snow day, that they’d want to keep him one more day.

But, they said that since Thursday mornings are lab days, that homecare could provide the same care they were providing and so we could go. I settled in for a long wait, as discharge has taken till dinner the last few times. But an hour later, Patrick’s nurse arrived with some patient belongings bags and a cart for me to pack up our things and by 1:00, I was signing discharge papers.

Moving us back in always takes work. For some reason, discharge and the monthly diaper delivery always come together and that takes a good hour to make room for in this tiny room as I clean out and haul out old boxes.

But, we got everything settled in. We found time to work on a valentine’s craft, even. Patrick was obviously exhausted and overstimulated and couldn’t focus on much of anything.. but we made it through the evening ok. The dinner group let him start eating early when they saw us come down for a snack. Patrick was tired enough that he preferred playing in the room today. And so things are unpacked and put away and the formula is mixed up and medications reconstituted and line cared for and teeth brushed and pajamas on and by 9:30 tonight, Patrick was snoring in his bed.

I really should get to sleep. I know I’ll need to change at least two diapers and Patrick’s formula bag still needs refilled every 5 hours or so.

It is good to be out. And as discouraging as this hospital stay was, it seems we actually made some ground. We found the cause for the random bleeding I sometimes saw and treated the ulcers. And we found that Patrick can eat enough food to have reduced his overall tube feed rate by 10%. That isn’t much, but eating 10% of his calories is a big deal considering how little he ate before and how few foods he is used to eating.

The doctors have assured me over and over again that he shouldn’t still be contagious. They even went so far as to clear him to attend child life activities at the hospital, which is definitely a statement that they don’t see him as a risk. His gut, however, still isn’t back to where it was before the virus. That is going to take time and patience and lots and lots of diapering supplies.