1/14/17

Just hanging out ...

Since getting home last Sunday we have kept life pretty low key.  Carla's teacher brought over her work Monday evening and we have been doing school at home for several hours a day. It has actually been pretty fun and I've enjoyed not having to rush around during the day. On a normal day, Carla is up by 6:30, to school by 8:00, I pick her up for lunch at 11:00, bring her back by 11:45 and then pick her up from school at 3:30.  So, it's back and forth to the school all day long. At this point we have settled into waking up when we feel like it, and doing school work in our jammies.  So, that's no too bad!

I am working really hard at trying to keep my anxiety at bay, and to only worry about the things I have control of, but sometimes that's difficult.  It's also difficult to not try to look into the future and worry about the stuff there... but if I want to keep my sanity it is important to stay in the now, do what the doctors tell us to do, and pray for good results. Sometimes that's easier said than done, but that's the goal :)

Thank you all for your thoughts and prayers.

Love, Jen
I told her it was time to "put on your thinking cap" ... Silly girl. 

1/10/17

Coronary Artery Disease

There is a bit of confusion about Coronary Artery Disease (CAD) in transplant patients, so I wanted to clear it up.

CAD in an adult is due to too much bad cholesterol building up and causing plaque to obstruct the artery walls.  Eating a "heart healthy" low fat diet is suggested for this kind of CAD.

In a transplant patient with CAD, the artery walls are not clogged with plaque, but rather scar tissue from the white blood cells attacking the heart.  It is a form of rejection and has absolutely nothing to do with diet. Kids with CAD in a transplant case are put on a statin, but because they don't have high cholesterol, are told to eat a diet rich in cholesterol to prevent severe muscle cramping.  So, if human nature gives you the urge to be a busy body or to judge a heart mom for feeding her child what she sees fit, you should probably consider the fact that she is following doctors' orders.

Love, Jen




1/7/17

The Plan

We heard back from the hospital yesterday and so we finally have a plan.  We will be coming back to Seattle on Wednesday, February 1st for a February 2nd heart cath to place a stent in Carla's LAD. Per MyHeart.Net:

 LAD stands for left anterior descending artery. It is a coronary artery, which is the name given to arteries that supply the heart muscle with blood. The LAD is considered the most important of the three main coronary arteries and is almost always the largest. It’s called the LAD because is on the left side of the heart (left) it runs down the front wall of the heart (anterior descending). The Left anterior descending artery typically supplies over half of the heart muscle with blood, so twice as much as the other coronary arteries.
http://myheart.net/articles/the-lad-artery/

We will probably spend the night at the hospital for observation and then be released the next day. Carla's rejection score came back as a 1R, which is unchanged from what it has ever been. We didn't tell Carla right away about the blockage, because we didn't have a plan.  But, after we got the plan we explained to her that we would have to come back in a couple of weeks to have a stent placed (like Grandpa got) and that she would have more energy and her shoulder wouldn't hurt when she laughs like it does now. After confirming that she would be asleep for the procedure, she thought it sounded like a great idea.

I have been in touch with Carla's teacher and she is going to bring her work over on Monday and also come over to help her with the math. I know I have said this before but, I REALLY LOVE CARLA'S TEACHER!

At this point we are going to be pretty low key and are looking forward to a month of lazy mornings, because we don't have to rush off to school every day.

Thank you for your continued thoughts and prayers :)

Love, Jen

1/4/17

Heart Cath/Biopsy

Carla had her heart cath and biopsy today.  We spoke with the doctor about an hour ago and we have some not so great news.  One of her coronary arteries, which was clear of blockage 9 months ago, is about 40% blocked.  Dr. Kemna is talking about possibly placing a stent in the artery, but wants to consult with the doctors at the University of Washington hospital, because they place many more stents there than they do at Children's.  Also, Carla's heart pressures are up, so she is thinking the blockage is most likely causing that. Her former coronary artery blockage is still pretty much the same as before.

At this point we have a pickle with regard to timing and whether to fly home on Sunday or not.  I am hoping that the doctors make the decision about what to do before our flight at 12:30 Sunday afternoon.  Because, it would suck to get a message while on our flight home, to be back to the hospital next Wednesday for a stent placement.  But, we would want to go home if the placement would be in a month. 

This isn't the best news, but we have definitely had worse, and are more used to getting the rug ripped out from under us... so it is less shocking. 

Please pray that the doctors make a swift and wise decision and that Carla does perfectly throughout. 

Love, Jen

12/28/16

Busy with Blessings

December has flown by and was so busy and full of blessings!

Bobby's parents celebrated 40 years of marriage on the 5th of December, so we took them out for a really nice dinner.  All they wanted was to be with their kids and grand-kids, so it was really special.


Our little Wright Family
Cody, myself, Bobby, Roger, Mandy & Thomas
Carla and Tammy
Mom & Dad, celebrating 40 years of marriage!

Just arriving...

My loves...


Selfies!
Look at this free dessert you get after 40 years of marriage!
On the 15th, Carla had her school Christmas Program, so Cody came out and we all got to enjoy some adorableness.  Carla was her usual animated self and several people came up to me after the program saying what a great job she did.


All ready to go!


My kids 
Carla and one of her besties 


The 3rd Grade... can you spot our little ham?

All of the elementary students...

On the 18th of December, we celebrated both Bobby's 42nd birthday as well as Grandma Morgan's 93rd birthday! Grandma's birthday is the 18th and Bobby's is the 19th, so as long as Bobby and I have been together, we've been celebrating their birthdays together.  It was really fun.


Grandma & Bobby


Dad, Grandma & Aunt Dianne hold  up the presents Auntie Jeannette sent.

It means so much to Bobby that he has been able to celebrate with Grandma every year.

Getting ready to eat :)
On the 19th we celebrated Bobby's birthday!  He and I went to the new Star Wars movie and then got together with with the Wright family for our annual tempura fry off!  We get all kinds of stuff (proteins and veggies) cut them up and fry them up Japanese tempura style. This tradition started when Bobby was just a kid. His parents set up a fryer in the garage and the three of them had fun frying one piece at a time. As the family has grown, so have our ambitions... Last year we had bought a turkey fryer... talk about simplifying the process! Fun fact, tempura fried mushrooms are amazing!

Getting ready to see Rouge One... We were the only ones in the theater at this point.  
The 18th was also the final day of school for Bobby.   So, after we got done in Helena, we came home and he polished off his last paper for school.  That being said, his birthday was even more awesome because he didn't have any schoolwork to do!  Yay!!!

The week of the 19th was busy with shopping and getting ready for Christmas. Christmas Eve finally arrived and Carla, Bobby and I piled in the car and headed to Helena.  The roads were pretty well dry on the way there, but we knew a storm was coming, so we ended up having to cut our day short and head home before dark. This was disappointing because we had planned on going to my Grandpa's on the night of Christmas Eve, but we just didn't want to have to drive around on terrible roads in the dark. In Helena, my Dad and Sue had Grandma Morgan, Andy, Bill, Tristan and baby Kamden over as well as us.  Sue made a delicious roast and then we opened presents. We had to leave around 3:00, but it was a really nice time.




Our little Wright Family, minus one.

Bobby & I
Dad & Sue 

Playing piano with Grandma

Grandma and her Grand babies
:)

Andy with his Snapcat shirt, we think it looks like him :)
:)

Kamden got really tired and needed to lay down, Grandpa had to join him...
Bill and Tristan with Carla

Loving up Grandma Morgan

I thought about taking this adorable little guy home with us. 

On our way home - yikes!  

Once we made it home to Cascade we finished wrapping presents, made Chicken Marsala for dinner and  the kids (Cody, Tom and Mandy) trickled in. We did presents around 10:00 and fun was had by all! We finally got to bed around midnight and Carla woke us up at 6:30 to do presents from Santa as well as from Bobby and I.  She is such a sweetheart and really takes her time unwrapping and enjoying the moment.  Most kids rip through presents like crazy kids, Carla takes in every moment, plays with and enjoys every gift. It's really neat.

Let the opening begin!


Look what Papa got!

Thomas is finally old enough to understand the importance of getting socks for Christmas.

Soft jammies for Mandy

Holy art set!

Everyone knows I like to cook...

... and Aunt Carol likes to be organized...

Tammy got the Harry Potter bluerays from Tom and Mandy...
Bobby and I therefore got Roger a blueray player...

I got Mom an electric throw... She's always cold and has declared this gift was perfect.

Mario, with his new toy

Carla and Mario, Christmas morning.

She's such a sweetheart :)
On the 26th I couldn't help but to be myself and take all the decorations down, find a place for all of the new stuff and get the house cleaned up.  Now it feels like home again, instead of a disaster area.

May the new year bring many blessings!!!

Carla has a biopsy on the 4th in Seattle. Please pray for nothing but good news.

Love, Jen

11/25/16

Carla's Heartiversary and a trip to Seattle

Last Tuesday, the 15th, was Carla's 4th heartiversary!  It is hard to believe it has been 4 years and at the same time it feels like it's been 10! Carla had appointments in Seattle on the 16th, so we celebrated her heartiversary before we left for the airport.

I bought little Donate Life pins for all of the kids in her class and made cupcakes.  The school did a great job of making everyone aware of Carla's special circumstances and even made a PowerPoint video to help teach the other kids to be good to each other.  If I knew how to upload a PowerPoint video to the blog I would post it here, they did such a fabulous job.  Everyone who's seen it in our family has shed a little tear. One of the clubs at the school also gave Carla Happy Anniversary balloons and when we left the school her class sang "Happy Heartiversary" to the tune of Happy Birthday.  On the way to the car a bunch of teenagers were coming up to her and wishing her a happy day. It was really special.

We left the school and met some family at the park for our traditional sending a letter of thanks up to the heavens for Justin.  When we got to the park the wind starting blowing something fierce, it took the balloons up just as fast as they could go!

Carla with some of the heartiversary cupcakes

wrangling the balloons in the wind

Carla, Uncle Tom and Mandy is on Facetime.

Our little Wright Family minus one (Cody was at work). 

Carla with Great Uncle Skip, Papa, Tom, Bobby & I (and Ranger dog). 

Uncle Tom took this one so that Grandma could be in the picture too. 
After our little ceremony we were off to the airport.  Carla and I had soup and fries while we waited for our flight.  We got to Seattle and rented our car just in time for 5:00 traffic!  It was dark and raining. I was so glad that we had lived there for that year and a half and that I didn't have traffic anxiety on top of the fact that it was dark and raining. We made it to Bev's house and promptly hit the road for an Applebees celebration dinner. It was so sweet of Bev to take us out to celebrate. By the time we were done with dinner, Carla and I were pretty well beat and settled in for the night.

Carla and I had to be to the hospital by 7ish Wednesday morning for labs. So, we hit the highway by 6:10. There was surprisingly a lot of traffic on the 405 as well as I5, but we made it to the hospital with time to spare. We made it through security, checked in and waited for the lab to call her name. They were running a little behind, which started to worry me, but they eventually got us in and labs went very smoothly. We bought Carla the new Diary of a Wimpy Kid book for her Heartiversary, and so she read that book the whole time she was getting her blood drawn. It was funny... kind of like, "Just go ahead and get your job done, I'm busy reading my book." After labs we went downstairs, checked in, and waited for cardiology. They did Carla's echo and then we waited for Dr. Albers. The new thing Children's has been doing is having a pharmacist and a psychologist come and talk to us while we wait. So at one point we had Jason, the transplant nurse, Dr. McKeever, the Psychologist, and Dan, the pharmacist, talking to us. When Dr. Albers arrived they all kind of cleared out. I feel like it was a little much all at once, but they have been working really hard on touching all of the necessary things that need to be addressed with transplant kids, which is good. Dr. Albers was happy with the fact that Carla's heart rate had dropped about 20 beats per minute and her echo looked unchanged. We didn't need to make any med changes, which was nice. After the cardio appointment we got a quick little something at the cafeteria, because neither one of us had eaten breakfast. We then headed over to the pre-anesthesia appointment at 10:30. That was pretty much just answering a bunch of questions. We had a couple of hours to kill after that appointment, so headed over to Target and bought Carla some boots to wear (instead of the little dress shoes she bought). After Target we headed over to one of Carla's favorite old haunts, the Yummy Cafe, and had actual lunch (we had just had enough to tide us over at the cafeteria). The Yummy Cafe never disappoints and afterwards we were ready to tackle the rest of the day... Carla had an  ENT appointment at 1:20 and I was worried that he would want to use a scope and look at her vocal chord... but you have to go through the nose, which Carla HATES (can you blame her!?) Thank goodness, Dr. Ingls let her know right away that he wouldn't be doing the scope, so that was great!  We were back to Bev's by about 3:00, and settled in for the night.
On Thursday we had to be to the hospital by 12:30 for a neuro/psych evaluation.  I was about a 3 hour test and we were happy to be done with the hospital for the weekend.
Yummy food at the Yummy Cafe!

On Saturday, we had the opportunity to meet up with old friends for dinner in Federal Way.  It was so fun and we hope to do that again in January when we come up for biopsy.

Sunday we had the opportunity to see Bobby's Auntie and cousins as well as to see my cousin, Amy, and her family.  It was a lovely day and I was feeling pretty blessed to have so many loved ones in the Seattle area.  It really makes having to travel there all the time a lot of fun.

Making homemade flour tortillas with cousin Ethan
Monday we didn't need to be back to the hospital until 12:15, but Carla's last meal was at 5:00 a.m., and then she was starved down the rest of the day. She actually woke up at 4:00, so I made her french toast and then went and laid down for a while longer.  I had actually been awake since 2:00, because I couldn't sleep. They didn't actually start her vocal chord procedure until 2:00, so at that time I was starving like crazy (I don't eat when she's being starved down).  After I left her in the procedure room I hit the cafeteria and found some yummy noodles that I heated up in the microwave. After eating I went downstairs and waited to be paged.  Eventually I was paged and got to talk to the doctor about how the procedure went.  Her vocal chord was kind of saggy, so he plumped up as best he could.  So far I have REALLY NOTICED a difference in her voice and she is A LOT LESS phlegmy! Thank God!  Hopefully this will last a couple of years. We were released from the hospital just in time for 5:00 traffic, and went to Bev's and just vegged out. We were both very beat!  I actually slept Monday night and was excited about coming home on Tuesday and getting ready for Thanksgiving.

All ready to go!

Trying to read while I was pestering her...

Procedure's done...

Freedom!

Just in time for traffic!

Eating Ivars' clam chowder at the airport, yum!

On our way home!


Yesterday was Thanksgiving and I can't help but to feel extremely thankful and blessed!  What an amazing life.

Love, 

Jen