2/7/16

Cardio visit

Friday, Carla had multiple appointments at Seattle Children's Hospital.  I was up at 3:45, woke Carla at 4:30 and left the house by 4:45, to catch a 6:00 flight to Sea Town.  We arrived in Seattle at 6:50, Pacific Time and caught a bus to get our rental car. It's always fun to see what we get to try out and Friday we got a little Subaru Impreza, I liked the way it zipped around. On our way out of the rental facility, I took a wrong turn, but thought there would be another I-5 ramp down the road, so just went with it. I ended up on Highway 99, which still leads to Seattle, but eventually made my way to I-5. We arrived at Children's by 8:45 to check in for Carla's 9:00 echo. When we were done with the echo, we went to our room, did some vitals and then spoke with Jason, one of the Transplant Coordinators. Jason got us a little contraption for Carla to breathe into, to help her increase the amount of air she takes in. After Jason came Dr. Law, the most thoughtful and thorough doctor we have ever had the pleasure to meet. While Dr. Law was with us a Pharmacy Specialist came and went over Carla's meds with me and got them all updated in the Med Schedule online and printed me out a copy. She then brought me a new pill container to organize Carla's pills, our current container is getting old, so this was kind of an awesome score! After Dr. Law, we saw Jason again and THEN we met a new team member, a clinical psychologist, Dr. McKever, who came and spoke to Carla. Eventually, we were rushed off to x-ray (to get a new baseline...Carla has been coughing up phlegm since she was sick back in September and they wanted to see what was going on). After the x-ray it was up two floors to see Dr. Debly, the Pulmonolgist (lung doc). They did a blowing test with Carla and were happy that she could produce good computer results. Dr. Debly listened to Carla's lungs and we spoke at length. He is another one of my favorite doctors. He has such a thoughtful and good bedside manner. He was impressed that Dr. Law had ordered a sleep study and asked for those results when we get them. He decided that we needed to "step up our game" with regard to Carla's lungs. We are going to start a Flovent inhaler again (she was on Flovent before transplant) and he gave us some equipment that Carla needs to blow into to help produce a good cough. We will have to do that 3 times a day. He wants to see us again when we are in Seattle for Carla's biopsy in August and he also wants to do a swallow study at that time, to rule out whether or not she has been aspirating a little bit. After we were done with the lung doc the last thing we needed to do were labs, but we weren't expecting labs, so didn't bring our own numbing cream. Dr. Law had ordered some that morning for us, so we headed off to pharmacy to pick it up. After picking it up, we were on a hunt for cling wrap, so that we could actually use the numbing cream. Thankfully the transplant team was able to find us some cling wrap, we got the cream on and wrapped up her arms. The cream says to put it on "one hour" prior to a procedure, so we decided to FINALLY go to lunch... It was 2:45 and all we'd eaten all day were the snacks I brought. Thank God I thought to bring snacks!  We went over to one of our old  Seattle haunts, the Yummy Cafe, and had some YUMMY Chinese food. After sufficiently filling our tummys, we went BACK to Children's for a blood draw that Dr. Law had ordered earlier that morning... They wanted to see if she is "too suppressed" or not. When we got to the lab they told us that they couldn't run one of the tests because it was after 2:00 and that we'd have to come back. I told them we were leaving Seattle that night, so just run whatever tests they could and for them to call the team and let them know what couldn't be run. We finished up at Children's around 4:00, and then had the pleasure of fighting Seattle's Friday traffic (which is even worse than any other day's traffic) back to the SeaTac area. By this time we were so incredibly pooped!   We had to take our car back around 7:30ish because our plane flew out at 9:20.  So, we decided to get a hotel room for a couple of hours, just to rest. We each snuggled into our own bed and had about 2 hours to decompress.  Which, was much needed! We left the hotel around 7:15, got lost on our way to the Car Rental Return area (but then Siri got us turned around). We made it through security, got some Wendy's, and rushed off to our gate. We were home by midnight. Bobby and his folks picked us up, which was really nice because I had the car there but I was so tired that it would have been a bummer to have to drive the half an hour home from the airport. Plus, it is always nice to be picked up by family, even if you just left that morning :)

So, executive decision, we will NEVER be doing a one day turn around trip again. It is way too much! Today is Sunday, and I woke up FINALLY rested from Friday's adventure! I think a big part of why it was so hard is just that instead of the plane leaving at 6:50ish, like it used to, it now leaves at 6:00... which is just too early (in my opinion).

Here are a couple of pics from the day :)

Carla, proudly displaying the "wings" she got on Friday. 

New pill container...

You can remove a day, for convenient out and about options...

Waiting for our food....

So tired but happy to be getting a break from the hospital :)

1/24/16

This and That

Hello! I just wanted to check in and say hi!

Carla is still coughing up phlegm and hasn't been feeling very great this week, her color was also very pale. I took her to the pediatrician on Wednesday and we did a lab culture on her phlegm as well as started another antibiotic. Unfortunately, I got a call on Friday that the preliminary results of the phlegm showed both a staph and pneumonicocle (sp?) I guess that would be pneumonia?  The nurse said that it doesn't mean that she has pneumonia and that the final results would come in over the weekend and that someone would call me.  But they are thinking her current antibiotic should just stay on board and hopefully it will take care of whatever is growing.  I haven't heard back from them yet this weekend but Carla's color does look better.  We also started a medicine called Singulair, which is actually an asthma medicine, in the hopes that opening up her lungs a little bit would help her to clear out the nasty cough (that's been going on since she had pneumonia in September). Our thought is that her lungs have been compromised from the Plastic Bronchitis, so hopefully this will help.

A couple of weeks ago Carla spent the night with her Grandparents in Helena, Bobby went to a concert with his band-mates and I had a long over due girls night out with two of my favorite people. It was a nice break and it was also nice to get to spend some time with my Dad & Sue. Later that same week I actually peeled off and drove to Helena to catch a movie with Sue. We were hoping for a comedy, but it ended up being more of a drama.  But, that's alright. While I was off in Helena Bobby took Carla out to lunch for a little Daddy-Daughter date.  They had a nice time too!

Today we will be headed back to Helena cheer on the Broncos in the Championship game against the Cheatas (what I call the Patriots). We will be doing lunch and watching the game at my Dad & Sue's house, followed by a birthday party at Jeff & Jessica's house for Ryder.  He turned 4 yesterday! When we return home Bobby has to get straight away on a paper that has to be written by tonight at midnight. So, we are keeping  busy busy.  

Carla and I will go in for labs Monday morning and then back to Seattle on Friday, February 5th to see both the heart docs and the lung doc.  It will be a whirlwind of a trip... leave Friday morning, home Friday night. Carla has gone through a big growth spurt and has outgrown all of her medicine doses... this means we have pretty much been doing weekly labs to get her levels back on track. I measured her the other day and she had grown over an inch since November 26th.  Crazy!

Go Broncos!

Love, Jen

Here's a picture of Carla at lunch with her Daddy. 

1/4/16

And now I'm sad...

I just dropped Carla off at school for the first day in weeks. ... and now I'm sad :( I'm going to miss having her around the house.  I'm also going to miss being in control of the germs she is exposed to. This morning one of her classmates was being dropped off at school and his mom was telling the teacher that he had had a fever of 104 since Christmas. But it broke yesterday, so he's at school today. GREAT. That makes me feel really good.  Seriously, would it have killed her to keep him home for one more day to MAKE SURE he's not contagious! I reminded Carla; no holding hands, hugging, or kissing her classmates. She loves to hug her friends. I also reminded her about the hand sanitizer on her desk and I wiped her desk with a Clorox Bleach wipe. I also pick her up and bring her home for lunches so that she isn't exposed to all the germs of the lunchroom... She washes her hands upon arriving home and I put DoTerra's "On Guard" on her feet before school and before bed. I'm not sure there is much more that I can do. But if you think of something, let me know.

Well, I guess I should get some of the chores done!  Happy Monday!!

Love, Jen

12/31/15

Merry Christmas!!!

Christmas was lovely and we had so much fun with family and food.  

Christmas Eve was a full day with travel to Helena to spend time with my family, having a lovely 1:00 "dinner", visiting and presents. After that, we hit the store for some needed dinner ingredients, drove home, make another full dinner (that turned out SO late but was worth the wait), opened more presents and visited more family.

Christmas Day began with more presents, friends and of course another full dinner...  Here are some pictures from our adventure. 


Oh Christmas tree! 

Grandma and I both got pink shirts :)

Carla with her little clip on dolls.  

Our little Wright Family, minus one. 

Bill, Tristan and Baby Kamden

Kamden really enjoyed himself. 

Grandpa and the Grandbabies...

We are so blessed to still have my sweet Grandma, we just love her so much. 

Family photo :)
Snuggling up to Uncle Andy...

Say Cheese!

Another Family shot.  




Carla with her Great Grandma.

Christmas Selfie

Merry Christmas Bobby


Grandma Sue & Grandpa Dad

Merry Christmas Andy
Papa & Grandma Wright
Reading a Christmas letter from Thomas (he and Mandy couldn't make it because she was stick)
Reading his Christmas letter from Uncle Tom

A present from Grandma & Papa

Christmas Morning...

Carla's bathroom is getting a remodel...

Deviled Eggs anyone?

A Barbie Dream House! She says: "I'm So Spoiled!" 

Putting the Dream House together...

From our house to yours...

MERRY CHRISTMAS, AND MAY THERE BE MANY BLESSINGS IN THE NEW YEAR!!!

12/22/15

Almost Christmas...

The tree is trimmed and the stockings are hung...
Christmas will be lots of fun!

We have been taking it one day at a time, Carla's Christmas vacation us underway and I have been enjoying not having to rush around every morning. Carla is a smell the roses kind of kid.  She takes in every moment and she does it at her own pace.  This is not a recipe to getting anywhere on time and causes her mommy a lot of anxiety.  Sometimes I joke about the fact that God gave me her to help me learn to slow down and He gave her me to help her learn to hurry up!

Last Thursday was Carla's Christmas Program, and yes, here in Cascade it is actually called a "Christmas Program" and the kids sing, you guessed it, Christmas songs!  It was really cute, the kids were adorable and I loved every minute of it....except the teenage boys sitting behind us yammering... That was annoying.  I wanted to snap my fingers at them!  But instead, I just turned around and gave them "the look".  Which caused their mother to shush them up, for a moment anyway. Teenagers.

In preparation for the program, Carla went and got her hair trimmed so that it would be perfect, and it was.

Saturday, the 19th, was Bobby's birthday. We spent the day snuggled on the couch watching the old Star Wars movies, in preparation for the new one. It was a nice day, and then Bobby had to head off to work.

Sunday we had our annual Wright family Tempura fry for Bobby's birthday, they have been doing it since Bobby was a boy, so every year we do it again.  This year Bobby and I had bought a Butterball Turkey Fryer and holy buckets, we had everything fried up in about 40 minutes. I was the fry master, usually we have two small fryers and the process is pretty painful. But, with the big ol turkey fryer it simplified the process.  So that was cool. Tom, Mandy and Cody came as well as Jeff, Jess and Ryder. Jeff's birthday is the 21st, so we celebrate his birthday with Bobby's as well.

Yesterday Bobby and I went to see the new Star Wars movie! It held true to the old Star Wars and we really enjoyed it. I am now looking forward to the next one! Carla and Grandma Wright went to the Chipmunks Movie, they also had a good time.

Today I will try to finish up some Christmas shopping :)

Thursday is Christmas with the Morgans followed by Christmas with the Wrights and then of course, Christmas morning.  I do love this time of the year.  Family, friends and love all around.

Here are some photos to enjoy!

Carla, with her present from Uncle Skip & Aunt Denise :)

Getting gussied up 

A photo shoot by the tree.... she's getting so big!

:)

Playing with the puppy

She's such a sweetheart.

The Second Grade Class, singing "Snowman Where'd You Go?"

The Second Grade Class, singing Rudolph the Red Nosed Reindeer
We wish you all a VERY MERRY CHRISTMAS!!!

Love, Jen



11/14/15

Three Years Ago...

Three years ago today, we tucked our little nukum in bed, said our prayers and then the phone rang... It was the hospital, "I think you know why we are calling at this hour," is what Pam, one of the heart transplant coordinators, said to me. I was in a state of shock... I was expecting a beeper to go off... not just a phone call a little after bedtime. Plus, we had been waiting so long for Carla's perfect heart that we quit thinking about it and started just trying to live as normal of a life as possible. I hung up the phone and told Carla, she cried because they were having a play at the school tomorrow and she wanted to go. I told Bobby, called family, calmed Carla down, packed a bag, cleaned up the house... let Carla play some video games (to calm her nerves) and FINALLY headed over to the hospital. We were minutes from the hospital but it took us a little more than an hour to get there. The thing is, we knew that 1) they were going to do the surgery in the morning so there was no need to rush over to the hospital just to hurry up and wait; and 2) these were the last normal moments were were going to have for a while. 

Carla, before school that day...
Carla, before we left for the hospital...

Another family was having a total different experience that night, they were saying goodbye to a beautiful little boy, taken too early. We feel so blessed that during their grief, they chose to let Justin live on through organ donation. Justin's perfect heart was a perfect fit in Carla's chest cavity, and even though she was highly sensitized, Justin's heart was also a perfect match for Carla.

Justin

Tomorrow we will celebrate Carla's Third Heartiversary, it is the day she was re-born, so we treat it as a birthday. We will also celebrate Justin, think of him and send balloons to heaven for him. We will be forever grateful for the wonderful gift of life his family gave Carla. 

Love, Jen



11/1/15

Happy Halloween!!!

Carla went as a witch this year!  Green skin and pink hair! She was thrilled, did a bunch of trick or treating and then went to over to the church where they were having a party and a hay ride!  She had a very good time!  We are blessed...



10/31/15

Halloween!!

Well, we've been home for a week and Carla is doing well.  She is super excited about today, as she has a play-date with one of her classmates and then we will be doing some trick or treating. Carla says it will be "The Best Day Ever!" One of the pleasures about living in a small town is that the kids still get to trick or treat. I will take pictures later and post.

Last Friday, the day after getting home, I caught that super horrid illness that Carla had.  It had me on my back for three days, followed by another couple of days of fatigue.  It was probably the most sick I have been, like ever.  This morning Bobby woke up feeling sick!  I feel so bad and hope that he doesn't get it as bad as I had it! :( I was really hoping we could all just be healthy for a while! He's going to stay in bed today and hopefully get better.

On Tuesday we finally got the carpet in our new apartment and have been busy this week getting stuff moved in. I have a feeling the house will be messy for a while, but it's fun to have access to our stuff again!  It will be especially nice for Roger and Tammy when we finally have our stuff out of their house and they can use the whole upstairs again.


10/22/15

Being released!

We are currently in the discharge process!! Carla will receive her flu shot and then we will be on our merry way! She still needs nighttime oxygen to keep her oxygen level above 90, but that's no big deal! We are super happy!

10/21/15

Wednesday night update

We are still hanging out at Benefis but Carla is slowly but surely getting better.  This morning I had a hair appointment that I had previously rescheduled when we were in the hospital last month. I really didn't want to reschedule again because my stylist takes quite a while to get into, so Tammy came to the hospital and hung out with Carla while I got my hair cut and colored. Yay! Carla was doing very well, went for a walk and was in really good spirits. When I got back the doctor told me that she had spoken to Seattle Children's and they were all in agreement to discontinue the IV antibiotic, because it is really hard on the tummy and none of her lab work has shown infection. And that Carla's magnesium level was 1.1 and they wanted it up to 1.5.  So, she has to take ALL of her pills today and MAY be discharged either tomorrow or the next day. When Carla was so sick we didn't force her to take all of her magnesium pills (because she takes 12 a day!). Now, I  just need to find a way to get her to take them all again.  It's really hard because her throat is still sore. Around 4:30 today, right at med time, Carla started developing a fever again and had the poos.  It was a bummer because she was feeling so well most of the day. We had been snuggling on her bed and being silly. Carla laid down and fell fast asleep around 5:15.  It is now almost 9:00 and she really needs to wake up so that she's not up all night, but I don't dare poke the sleeping tiger.  That little tiger can be fierce when she is sick and you wake her.