Summer vacation

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

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

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

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

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

A practical life mommy school lesson on how to sweep.

A practical life mommy school lesson on how to sweep.

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

Teddy Bears

B is for Bears, and a teddy bear picnic.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Builder Patrick

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

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

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

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

The end of another school year

Patrick woke up crying this morning at 6. Not just a little “I’m sleepy” cry. Out and out sobbing. When I asked him what was wrong, he replied “Push!!” “Push what?” I asked. “Push TAMMY!” He answered.

And I understood exactly what he meant.

“Push Tammy” is code for “I fought with my classmates at school again.” This time it was a dream. But it hits on a really real fear and a very big problem that I’ve been so baffled and busy with that it’s kept me away from this blog for quite some time.

This has been a hard school year for Patrick. My sweet, friendly, optimistic little boy has felt stressed and discouraged and just plain rejected. It was bound to happen one day that his medical issues and his developmental delays and his just-plain-awkwardness would catch up to him and cuteness wouldn’t carry him anymore. At least it started in his last year of preschool with a teacher who knows him and is OH SO patient and willing to adapt and help.

Patrick’s frustrations have manifested themselves in a lot of hitting, pushing, and kicking. Usually it’s subtle and small. Sometimes it’s angry. Some would say we’re lucky that he’s perfecting the art of the tantrum this late in life. The problem is that at age 5, it’s a whole lot more frowned upon. And it certainly is costing him friendships.

So, if you’re wondering what I’ve been doing since I wrote about the IEP meeting last fall.. I’ve been volunteering in Patrick’s classroom, advocating for a behavior plan and better support for him at school, trying to find a good psychologist and then trying to implement what she’s trying to teach me to do.

I’ve also been being humbled a lot as I realize how far I need to go still in developing patience, self-control, long-suffering, flexibility.. and on and on…

Oh, and watching a lot of Mister Rogers and Daniel Tiger’s Neighborhood. Because they teach lessons both Patrick and I need to learn.

Now – why am I telling you this? Well, because I am really hoping that I can spend the summer blogging about how Patrick and I are having wonderfully fun adventures together as we explore the alphabet. Patrick’s got just a few days left in preschool. 

So if I tell you now about this struggle, maybe I’ll stop worrying about how to tell you about this struggle and can get on with writing about our lives, imperfections and all.

The rest of today didn’t exactly pan out much better. Patrick’s nap got delayed because of our kitchen remodel (subject for another post soon).. and then I had to wake him early for speech therapy. And he was so tired that he fell asleep in the car for the first time in a year. And the he wouldn’t talk to his speech therapist and threw the flash cards she was using on the floor again. And when that was done, we took him to the zoo to see the new lions. And I’m not sure if he had a good time or not, because he was so sleepy he only cared about pushing the stroller (a tendency his psychologist calls a perseveration, which means something he gets stuck on obsessively). And when we would take it away, it just plain made him mad. And he tried tantrums, and we tried not to give in to tantrums… But when I reminded him he needed to calm down, he took a breath and counted to 4, then asked again in a nice voice. That is actually really good progress for him, and for me.

 

Another IEP meeting behind us.

I feel like a huge weight has been taken off of my chest. Although we have always been very blessed with a caring and cooperative IEP time, hammering out an IEP that meets Patrick’s many needs is no small feat. And this year, with everyone on the IEP team, except the classroom teacher, being brand new to us, I was especially worried.

So I got dressed in my best “I’m competent” clothes, a change from my usual “I’m a special needs mom and you’re lucky I am dressed” wardrobe. I even put on makeup and did my hair. I packed a bag of toys for Patrick and brought along a stack of supporting documents for me. I stopped at the store and picked up some new puzzles for Patrick, even. Then went to Dunkin’ Donuts for goodies since the meeting was at lunch time and I wondered how at least the classroom teacher was going to manage to eat.

Then, as I was sitting waiting for Brian to meet me, I noticed that I’d mixed up my brand new jeans with an old pair of jeans with a hole in the crotch that I’d worn gardening last week. And I crossed my legs and shook it off because I couldn’t let that throw me today.

It seemed like this year’s IEP was all the more important than years past. Before, we were just making goals to help move forward his academic and developmental progress. This time we were dealing with new and worsening behavior problems as Patrick has become aware of his limitations. He wants with all his heart to fit in and make friends, and he just doesn’t have the skills and savvy to do it right. And so he’s taken to hitting, kicking, and pulling hair when he feels frustrated instead.

I had a feeling stress was building. But, I’ll be honest, I’ve been surprised and quite devastated that things got this hard this fast.

As the school year ended last year, I knew that impulsivity was getting to be more of a problem the more Patrick could do things for himself, but still couldn’t be independent. I asked his neurologist for help and he referred me to an amazing program designed to help children with developmental delays and behavioral issues.

But when I started down that path, insurance informed me that the program was through a non-contracted provider. They are a non-profit and we could maybe have made things work, but it was going to cost us more out of pocket than I expected. And, to make matters worse, their wait list was months long… all summer long in fact… just to get an evaluation.

My sweet insurance case manager felt so bad delivering this news that within a day, she’d called around and found a neuropsychologist who they contracted with who could squeeze Patrick in for some developmental testing. I had to fill out a mountain of paperwork. The questionnaire was over 50 pages long. Plus provide a medical/developmental history. (Another 50 pages at least). Then, Brian and I went in for an interview where we talked about all of the things that concerned us about Patrick’s development and behavior. Then it was Patrick’s turn. 4 hours of alternating standardized testing and play therapy and observation. In the end, we got a 25 page write up describing our child. His strengths. His weaknesses. His learning style.

In the end, Patrick was diagnosed as having many physical and cognitive delays stemming from his brain injury. (No surprise there.) And with ADHD. (Also no surprise, though really nice to give it a name we can work with.) The evaluation also included testing for autism and the doctor and Patrick’s therapists and I had a long drawn out series of conversations in which we discussed the way that Patrick’s brain injury sometimes makes him act like he is autistic (sensory processing disorder, social difficulty, quirky little obsessions).. but in the end decided that that diagnosis would only cloud and confuse things for him as it doesn’t exactly fit.

Armed with new diagnoses and 25 pages about how to help Patrick learn (with very specific examples of areas to teach him in), we supposedly had all the makings of a rockstar IEP.

Hence my anxiety over the past month in trying to get things just right. I’ve been e-mailing and talking to Patrick’s new special education teacher (this is an extra teacher who works with him in a regular classroom). I have felt like the super duper stubborn bad guy with my list of unreasonable demands. I really wondered if they were starting to hate me.

But today’s meeting was yet another IEP success. I feel like Patrick’s got a group of very astute and caring team of people working with him. And, in the end, they found a way to give Patrick just about everything we were asking for for him. In fact, a little bit more, even. Like a motor aid to help him in PE. And picture schedule cards for each type of activity in the class. And a more supportive chair for work table time. The occupational therapist offered to work with him on a sensory diet (meaning physical activities to meet his sensory needs throughout the day), which is virtually unheard of in IEP’s in Utah. And the speech therapist offered to build Patrick social stories with him as the main character on her iPad. And, as icing on the cake, they have a written behavioral plan in place for Patrick and are calling in a psychologist to consult and help Patrick learn to control his temper in class.

Of course, the trick now is finding practical ways to make it all work together.. But it is such a relief to feel like we’ve got our feet pointed in the right direction again.

And a big relief to be done with a crazy month of trying to see all the doctors and all the therapists and gather recommendations and write firm but kind “parent advocate” style e-mails that say what they need to, but then have to be trimmed down because, face it, I’m verbose. It will be a relief to be done rehearsing arguments about the IEP in my head all the time.

At least till next fall. Or maybe spring. Or maybe earlier, if things aren’t going quite as they should.

The Orange Rhino Challenge and a whole lot of stars

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Patrick loves school! He is so happy to be back. He is making new friends at a record pace, as well as happily meeting and playing with his old friends before and after school.

But, he’s also been really struggling since school started. At first, the reports were a few here and there coming from the classroom. Then one day, the special education came out to meet me and talk about the problem. Patrick has been growing increasingly aggressive. He’s not picking fights per say, but when he gets mad or feels ignored, he has been using his hands and feet to express his anger. And it’s been getting worse, spilling over into therapy and playdates and church and home.

I loved the conversation with the special ed teacher. (Note, this isn’t the regular classroom teacher. This is a teacher who visits the class a few times a week and, like everyone else, is new this year.) She said she’d heard that Patrick hadn’t had these problems last year in school and asked me if he’d been under any stress at home. I explained that during the first week of school, Patrick had had major, life-threatening medical issues and had needed to travel out of state for surgery. She said, “Well, I know about that. But other than that….” Yeah. She didn’t get it.

Then she asked me what helps at home. I tried to explain sensory processing disorder and how he needs a physical outlet for his energy or he can’t sit still, gets in trouble, gets embarrassed, gets mad, and hits. She told me he gets a regular sensory time once a day. Yeah. She didn’t get that either.

I left the conversation with two clear impressions. 1) Patrick was struggling at school and 2) I was going to need to come up with some answers to help him and/or a better way to communicate with the plan-makers at school because we weren’t going to make much progress otherwise.

I put a lot of thinking and reading and talking and praying into the problem over the next couple of weeks. And I watched as things got worse and worse. It was pretty clear to me that Patrick has been responding to the stress of having his life turned completely upside down… and then having to start school. Not only that, but school twice as many days a week as usual, and in a class that is much younger and more chaotic than last year. He’s feeling overwhelmed and he doesn’t have the words to express his feelings or stand up for himself. So, he’s doing the only thing he can figure out to do. He’s fighting back physically.

And then I remembered something I encountered a while back. An amazing woman who made a goal not to yell at her kids for a whole year, 365 days..  She blogged about the experience and is still blogging and running a Facebook support group to help other parent learn to discipline without yelling, too.

She calls the project The Orange Rhino challenge.

And I realized that I can’t expect Patrick to learn to deal with and express his anger and frustration and overall exhaustion with his situation in healthy ways if I haven’t learned to control my own temper.

But I just couldn’t seem to get there.

And then, a few days ago, I took Patrick to a checkup with his neurologist. We discussed the results of his recent neuropsychological evaluation (a topic that I swear one day I’ll tell you more about, but in a nutshell Patrick was diagnosed with several learning challenges, as well as ADHD) and how to help him learn to work through his attention issues at school, and he offered to have me talk to the department social worker about resources.

That conversation was a lot about how to create a behavioral plan in Patrick’s upcoming IEP. But one thing that stood out was that he suggested using a reward system to encourage the behavior we wanted instead of just punishing “naughty” behavior.

And I just couldn’t get the thought out of my head. Finally, it came to me. And yesterday, Patrick and I had a talk and made a deal. We both need to learn to be gentle when we feel angry. So, any time one of us is going through a hard time and feels mad and chooses to use soft hands and soft words instead, we get a sticker.

I stuck a sheet of foil star stickers in my pocket and away we went.

It was a rough start, with a tantrum first thing in the morning when he failed to earn a sticker by hitting when he didn’t want to take a bath. I thought maybe I was in over my head. But soon, we had our groove.

I took him to school with 3 stars on his head, gave a sheet of stickers to his teachers, and hoped for the best. I picked him up after school to find a dozen more stickers on his head. He was so proud of himself! His teachers reported an improvement, too.

So why am I telling you all this? Well, part of the plan of success with the Orange Rhino challenge is to tell people what you’re doing so that, if you’re feeling weak, you can call out for help. I’m two days in… we’ve had a few almost tantrums from both of us, but we’ve made it so far. It’s easier because we’re doing it together.

My goal isn’t necessarily a year of no yelling. But it is to earn as many sparkly star stickers as I possibly can each and every day.

To know more about the Orange Rhino Challenge, here’s a website: http://theorangerhino.com/

 

 

My little photographer

This weekend, we took a short family getaway. My smart husband saw a deal on a cabin in the woods right as he went to leave for the Ukraine a couple of months ago. (You know, before everything hit the fan) and tasked me to pick a weekend.

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Little did I know when I booked that the Uinta Mountains would be hit with an unseasonably early snowfall. Still, we trusted in the warm cabin, and packed and went.

Getting there was a bit crazy, as we squeezed in an eye exam and speech therapy before we left town. But the trip up was peaceful, despite falling snow. We met one of our favorite Short Gut families for dinner on our way through Evanston, Wyoming and then arrived and settled into our cabin just on time for bedtime.

It was so peaceful to sit by the fire, snuggled by my husband, watching the snow fall and the end of a football game. And then, well, the rest of the night wasn’t as peaceful. Patrick didn’t sleep well and was up early, early in the morning.

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The snow meant we had to cancel our plans to explore the mountains by ATV and we had to settle for a drive in the car instead. Still, despite the rough start to the day, we had a really nice day out. The mix of autumn leaves and nearly a foot of snow made for stunning scenery. The free range cows preferring to move along roads to avoid snow broke up the drive. And we enjoyed some yummy pizza for lunch before heading back to the cabin. (They even made Patrick a crust-only pizza that, once convinced to try it, Patrick sat and ate for half an hour.)

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But for me, one of the highlights of the trip was Patrick discovering my camera. Brian loves photography and with the amazing fall/winter scene, we stopped to take pictures along the way. To keep Patrick entertained in the car, I offered him my camera when we stopped. Before long, I was following along behind him as he sought out the perfect picture. (Just like his Daddy.) It made his day and I find it quite entertaining to see the world from his point of view.

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I hope you enjoy his work, too. (The rest of the pictures in this post were taken by Patrick).

Looking out the car window

Looking out the car window

There is a whole series of pictures of Patrick's feet when he didn't realize the camera was turned around

There is a whole series of pictures of Patrick’s feet when he didn’t realize the camera was turned around

Provo River Falls

Provo River Falls

 

Mommy

Mommy

Looking up at the trees

Looking up at the trees

Daddy taking pictures at Provo River Falls

Daddy taking pictures at Provo River Falls

"Green"

“Green”

Mommy (with some help from daddy to get Mommy in the frame)

Mommy (with some help from daddy to get Mommy in the frame)

View from our cabin window

View from our cabin window

A selfie

A selfie

The time out chair

The time out chair

Trees behind our cabin

Trees behind our cabin

Back to school

In the midst of all of this madness, Patrick went back to preschool.He was excited, for sure, but talk about a crazy time to send your little boy back to school! He attended his first week. We picked him up from school on Thursday afternoon, flew to Omaha, got a new line put in, came home Sunday, and sent him back to school.

On the one hand, it was nice to have somewhere fun, comfortable, and safe for him to go while I tried to get everything taken care of medically. On the other hand, it’s really hard to have your world turned upside down and come back to a brand new routine.

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I think we’re getting there, though. Finally.

Patrick is super excited to be back in his familiar classroom and we’re both very happy that he still has his great preschool teacher, Miss Catherine. She is great about being aware of all of his needs, but still letting him be a kid.

Both of the classroom aides that he knew and all of his therapists have changed. That has been disturbing to him. Thankfully, one of the aides worked with him in his other classroom last year so he already feels safe with her and she is comfortable with him.

It’s different for Patrick to be one of the bigger kids in the class. For one thing, I can tell that he’s really kind of annoyed at all the little kids who don’t know their names yet and hang their coats in the wrong places and steal the other kids’ name collars. Kinda makes me smile.

He was worried that his best friend from last year isn’t in his class again. Thankfully, we still see Fred before school because he’s in kindergarten and they line up right next to us. I was actually really excited when Fred recognized Patrick and climbed right up into the car next to him to talk to him the first day. These two little boys are really kindred spirits and I’m so happy that friendship survived a summer apart.

Patrick’s also making new friends in his class. He has a little boy in the class named Angel who is in a wheelchair. Last year, Patrick really fell in love with a little boy named Conner in his class who was wheelchair-bound. Since then, when Patrick sees a child in a wheelchair instead of seeing the wheels (which is his natural tendency)… he looks for a friend there. Angel is no exception. Patrick adores Angel. He goes right to him to talk to him while all of the other kids gather in the mornings. At first I worried that he was making him uncomfortable, but I can tell now that Angel is happy that someone comes to him, since he can’t easily go to them.

I had a chance to volunteer at the school after just a few days. I actually had a really great time. It was wonderful to be somewhere where my education in teaching, Spanish and sign language met up with all of the special needs training I’ve picked up over the past 5 years with Patrick. It was awesome to play with all of the kids and I think that knowing them has made it a lot easier for me to help Patrick learn to interact with them in line in the mornings. I can’t wait to go back and help more. But for the next couple of weeks, it seemed that I should probably give Patrick some space. Having mommy in class was fun, but also kind of cramped his style.

Starting the school year in chaos has been hard for Patrick. The transition to busy structured days has been tricky, too. With school most mornings, all of his doctor and therapy appointments fall in the afternoon. After the first couple of weeks, we were both irritable about the new, more demanding schedule.

Finally, this weekend I decided it was time to stop trying to accomplish so much. We took a total lazy day Friday. It took till 10 a.m. before we were dressed and left the house. It was a perfect break and I can tell he’s feeling better already.

Hopefully that will translate into him doing a little bit better in school this week. I hope he’ll feel more at home as he gets to know the new staff and classmates, too.

Patrick loves school and is so excited to be back. And I’m enjoying a little more peace and get-things-done time than I’ve ever experienced before.

And I hope in a few more weeks that we’ll hit our stride and it will feel natural again.

Hooray for preschool!!

 

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.

 

 

 

Getting a line in and back on the transplant list

Sorry to have kept you waiting for updates. As you’ll see from this post, it’s been a crazy few days.

First of all, if you haven’t heard word any other way, the doctors in Nebraska were able to get a new central line into the Superior Vena Cava and Patrick is back on the transplant list. I mean to post updates but didn’t expect them to order bed rest and minimal activity for the next days after the procedure and, well, accomplishing that is kind of a full time job where Patrick is concerned.

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We checked in to pre-op at 5:30 a.m. which is 4:30 a.m. Mountain Time and we were all incredibly sleepy. Pre-op was the usual flurry of activity as we met anesthesiologists and got fluids ordered and labs drawn. (They had an amazing phlebotemist who managed to draw blood without Patrick even crying and on her first attempt.) We met the OR nurse whom Patrick loved so much he said she was “Kinda Jo”, in other words, put him at ease like his favorite child life specialist. He collected teddy bears and various and sundry medical equipment to use on the bears and charmed everyone in sight.

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Loving his warm blankets in pre-op

Then we got the meet the doctor and go over the plan.

The procedure it took to get us there absolutely terrifies me. I order to get around the blockages, they put a guidewire in through Patrick’s femoral vein and ran it up to his heart where they repositioned the veins in order to reach the right ones and get around the clotting and scarring. At least, that’s what I understood. He followed along with x-ray and ultrasound the entire way to make sure things went where they should.

What I really gathered from the description of the procedure is that it was insanely dangerous. As the interventional radiologist was going over the risks with us, I just kind of had to shut off the part of my brain that could process what those risks might mean and remind myself that without it, he had no long-term chance of survival. Instead, I honed in on the fact that he sounded confident in what he was doing and that, well, it just felt right. I couldn’t help but think that THIS was the reason we’d been impressed to transfer Patrick’s care to the University of Nebraska. Because they had doctors who had developed this technique to save access and save lives.

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Knowing how difficult Patrick’s access can be, we all kind of hunkered down expecting them to need hours. So, when we looked up at the status board after just a couple of hours and see that they were closing. Then, sure enough, there was the doctor telling us that everything had gone well and that he had a new line in place.

As we understand it, this is a rare direct superior vena cava line, entering the vein directly after going through soft tissue. (Patrick’s GI is questioning this, so I’m getting a copy of the procedure notes so I can go back over what was done and we can understand it.)

He went ahead and put in another double lumen line for us. Because they stock a different brand, the line they had was rather large, a 9 french, but that could kind of be a good thing. Should be less prone to clotting problems.

He also us that this line is to, under no circumstances, be taken out without his approval. If Patrick gets and infection, if the line breaks, if it clots, whatever… the team at the University of Nebraska needs to get involved. Maybe they will teach the team here how to keep the site open. Or, maybe they will fly us back out again. Whatever happens, they do not want to have to attempt to repeat this procedure. We were told that, next to transplant, this is one of the riskier and more specialized things that they do at their hospital.

Whew!

And by the end of the day, Patrick was back active on the transplant list.

The rest of the day was kind of crazy. Because of the risks of bleeding from that femoral access, Patrick was ordered to 3 hours of total bed rest with that leg completely immobilized. Knowing our child, we quickly agreed to request sedation for that.

At first, the sedation made things a little easier as we scrambled to attached fluids to the new line to keep it open. We also called to ask that his old line be removed while he was sedated (they’d left it in thinking it was still needed, but decided we didn’t need that to be done at home.)… and then scrambling to round up information about the new, different brand of line and repair kits, etc.

Patrick started to wake up just a little and was, well, cuddly. That’s normal for him, but normally I’m also allowed to hold him. This time, he had to stay in bed. So he settled for holding onto my head. For half an hour, he held my head as tightly as he possibly could. (Meanwhile, the doctor came back to pull the old line.)

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Patrick making his teddy bear play tablet while on forced, sedated bed rest

About an hour in, the nurse decided to stop giving him sedation and just let what was in his system and me distract him. So, we played games on the tablet and we checked the blood pressure of the teddy bear and tried out a Nintendo DS. Meanwhile, Brian went back to the Ronald McDonald House to bring back TPN and to try to meet our delivery of medical supplies.

2 hours in, the doctor said that Patrick could sit up in bed and make sure his leg was ok with the extra movement. The post-anesthesia nurse was kind of tired of him tying up the space in PACU I think (they could only keep giving him sedation there) and so she discharged us to their extended care unit.

The extended care nurse acted as though she hadn’t received report from the PACU nurse, though. When we got there, she tried to insist that Patrick needed to stay lying still in bed for another hour because that’s what the orders in the computer said. And so, well, yes, I went a little angry mama bear on her and told her that I would not have agreed to come to her unit had those been the instructions.

And then we spent the next half an hour trying to keep Patrick still sitting up in bed, doing crafts, sipping water, and not chewing on or removing the COMPLETELY inappropriate non-pediatric pulse oximeter on his finger.

And then, I don’t know who talked to her, but the nurse came back in and cheerfully told us we could get Patrick dressed and he could be discharged. Like the nurse who I’d gone crazy on didn’t even exist.

Anyway, we were grateful for the dismissal as we had managed to squeeze in an appointment with one of the transplant surgeons at 1 p.m. and 1 p.m. is when Patrick was supposed to be cleared after 3 hours’ bed rest.

So, we hurried over to the Intestinal Rehab Clinic and checked in for our visit and a little while later, Dr. Langnas joined us. We explained to him our concerns about whether or not waiting for a combined liver/intestine transplant might be increasing Patrick’s wait time. He listened to our concerns and then explained the benefits that he sees for Patrick in the liver listing. Then he promised us a future date where, if Patrick has not received a transplant, he will take our concerns back to the transplant review board for reconsideration.

The rest of the day we spent trying to help keep Patrick down. We went back to the Ronald McDonald house again for a little back and let Patrick play in the playroom. Then, in the interest of some forced holding still, took a drive instead. Patrick heard us mention the temple as a possible destination and voted for that. So, with our bruised and bandaged and druggy little boy, we went and visited the Mormon Trail Center and Winter Quarters Temple grounds. Then came back on time for a yummy lasagna dinner courtesy some generous Ronny House graduates, then went to bed early and exhausted.

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Playing pioneer at the Mormon Trail Center

After tucking Patrick into bed, it hit me just how serious what he’d been through that day and week really was. Another case of him surviving against the odds, an unquestionable miracle. And a VERY close call. I shed a few tears of fear and relief that night, said a prayer of gratitude, and went to bed.

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.

The “McDonald’s” House

Making this a quick little update. We got a call yesterday morning to preregister Patrick for a procedure scheduled for Friday morning. Check in at 5:30 a.m. I spent most of the afternoon trying to confirm that we knew all that we were scheduled for, and then booked a last minute flight from Utah to Nebraska.

We made a mad cleaning/packing scramble last night and this morning. Patrick went to his second day of preschool, then we picked him up early and went straight to the airport.

The flight was uneventful, despite having to carry so much IV fluid that it filled an entire carry on bag. (Had to bring TPN and the substitute fluid, too.)

We arrived at the Ronald McDonald House a little before 6 p.m. When Patrick heard where we were going he tried to put in his favorite order, a powerade and fries. There was none of that here, but we were here just on time to get dinner brought in by one of the local hotels. Patrick was excited about the yummy roast potatoes and actually ate dinner for the first time in several days.

Then, we let Patrick play in the toyroom while Brian brought in our luggage.

What a refreshing change staying here is! Instead of a hotel where everything is overwhelming and nothing is kid-friendly, we find ourselves nestled into a very homey little environment where I already know some of the other families from our support group and everything is designed to make kids and their families feel at ease.

I just set an alarm for 4:40 a.m. so we can be up and on time for check-in. Hoping to be posting some good news by tomorrow afternoon.