4/24/16

Home Sweet Home...

We finally made it home and I was for the most part able to unpack and get started on the laundry :) It was also nice to cook a couple of meals in my own kitchen. There really is no place like home. I haven't been able to upload any photos to the blog, so I am excited to share what I have from the last weeks "adventure".

Last Thursday, the 14th, Carla and I took off for Helena.  We were going to stay there and then make our way to Missoula Friday morning for an 8:30 a.m. appointment, but we ended up deciding to head to Missoula that night. I was so thankful that we did, because the weather took a turn for the worse and I wouldn't have been able to make it to Missoula Friday morning. When we were in Helena we were able to see some family. Grandma Morgan had a little health scare and so my cousin, Kimberly, who we haven't seen in about 5 years came up to see Grandma.  My Auntie Jeannette was also visiting from Sacramento. So, it was good to have a chance to see some family.

Here we are at Grandma's, we had a nice visit.
(Kim got all of the tall for the whole family)

Kim, Carla and I.  :)
(I am standing on a stair)

My silly Auntie, pushing Carla around the lobby.  
We were able to stay at the St. Patrick's House in Missoula.  It was a very sweet little place, they've been in Missoula for longer than the Ronald McDonald House but pretty much have all the same rules, etc.
Having a snack. 

Carla, in our room. 
At Dr. Sticka's office we found out that Carla has grown half an inch in the past month! She is up to 4'6"!  Holy tall!

The roads were bad, and the echo showed a little bit of decreased function, so we got a room in Missoula and decided to make the best of it.  Carla loves to swim, so we went to target, bought suits and went swimming while we waited for the doctors to call and tell us what to do.

We like to try to make these scary doctor moments as low key as we can. Taking advantage of the fun stuff we can do helps Carla to not get anxiety about her health.
Carla's new My Little Pony bathing suit 
On Sunday we made our way over to Seattle.  Her biopsy/cath was scheduled for the second case Tuesday morning, but they didn't get started until around 11:30. Here she is playing on her ipad, waiting patiently.  Luckily this child doesn't get hungry in the morning.
Our little sweetheart.

Selfies while we wait... Sure do love this man :)

Bobby dressed up in the fancy white gown and carried Carla to the cath lab.
She does get a little nervous... Daddy is the best at making things less stressful.
 After the biopsy we talked to the doc who did the procedure. He said everything looked good and that we would have to wait for the biopsy results to know more. Carla had to lay flat for 4 hours following the procedure.  So, they released us just in time for Seattle's 5:00 traffic!
Freedom!
We waited impatiently on Wednesday for the hospital to call... it wasn't until about 10 after 7 that Dr. Law finally called.  We had about a half hour conversation and made a plan.  Basically, the rejection score was the usual 1R (mild rejection). Dr. Law spent a whole bunch of time reviewing Carla's echos over the years and trying to pin point when he saw a change. He realized a slight change in her echo in 2014, around the same time that we found the coronary artery disease. Now, her coronary arteries look clear, which is a mystery because that doesn't happen. But with this increased heart rate he thinks that there must be some vessels that are blocked that we just can't see. Instead of listing her for a new heart, we are going to try to increase the meds that help with coronary artery disease. So, we are doubling her Myfortic dose. He also said that her cholesterol levels are low (because of her statin) but that we need to keep the statin on board because of her coronary artery disease. So, we need to increase her cholesterol intake. We also are starting a beta blocker to slow her heart rate, but it has to be introduced very slowly and I need to monitor her blood pressure so that it doesn't get too low.  The beta blocker will be up to full dose by July 1st, we will increase it every two weeks until then.  He also wanted to start her on CoQ10, which I honestly had never heard of, but it's a supplement that is supposed to help heart function.

This was a lot to take in and we had to get home to our blood pressure machine before we could start anything new. So, Thursday morning we headed off the Children's to pick up the new meds and were on the road by 12:00ish Montana time. We made it as far as Couer d'Alene and decided to stop for the night.  A 10 hour drive isn't as easy as it used to be, and with Carla needing 2 breathing treatments a day (for the bacteria in her lungs) we had to stop and get that done.  Luckily, it had been 48 hours since the heart cath, we were able to go swimming!  



(She's secretly a mermaid you know).
I used to be one too, but with adulthood outgrew my mermaid-nes
My tail came back on this trip...
We had the whole pool to ourselves and it was a lot of fun!!  Friday morning we hit the road early to make it the rest of the way home. Carla decided that she wanted to customize a My Little Pony, so we stopped at the store in Helena to get a pony to paint and some sharpies to color the pony with.  It was our first project as soon as we finally made it home!

Mario was SO EXCITED to have his family back!  And we are so happy to be home! It was a gloomy day yesterday, so I decided to make some Chugwater chili and catch up on some relaxing ;)

Yum!
All in all, things for now are good.  I am establishing a new routine with Carla's new meds and new need to have her blood pressure monitored... school starts again tomorrow and I don't know how on earth that's going to go.  But, wish us luck!

Love, Jen

4/20/16

Biopsy Results

Ok, just talked to the doc - Carla's rejection score is still a 1R, which is great. She does still have a high heart rate, so we will be addressing that with a new med (Carvedilol) which is a beta blocker. We will start this med very slowly as it would be hard on her to drop her heart rate quickly. Also, we will start doing blood pressures every day (to make sure it doesn't get too low), increase her bad cholesterol intake (because her statin has her LDL levels too low but she needs it for her coronary artery disease). We also are doubling her myfortic (one of the immunosuppression meds) because it helps with coronary artery disease and eventually lowering another of her immunosuppression meds (tacro) because we are doubling her myfortic. And, we will start a supplement called CoQ10, which is good for the heart. Carla's heart does have a little bit of a decreased function that Dr. Law noticed cropped up around 2014 with the coronary artery disease. We will monitor the heart function closely, we see the cardiologist in Missoula again in 6 weeks. 

We will start making our way home tomorrow.

Love, Jen

4/19/16

So far so Good!

Carla had her heart cath/biopsy this afternoon.  The doctor who did the cath said that her coronary arteries, heart pressures and heart function all look great.  We will find out about the biopsy results tomorrow and if there is no rejection, they will start a beta blocker to slow the heart rate.  So, we will know more tomorrow as to what the plan is.  If everything looks good, we will be able to go home right away.  If not, we will go from there. 

We are in the process of Carla's recovery and won't be released from the hospital for about 2 more hours.  She has to lay flat and is just watching some TV and hanging out.  We are very relieved that everything looks good so far! 

Thank you all for your prayers!

Love, Jen

4/18/16

Back in Seattle

On Friday Carla had a cardiologist appointment in Missoula. Her echo showed some possible decreased heart function, so after both the Missoula cardiologist and the Seattle docs looked at it, they have decided that they want to do a biopsy to make sure she is not experiencing rejection. We drove out to Seattle yesterday and Carla's biopsy is scheduled for Tuesday morning at 9:00 a.m.  We won't know the rejection score until Wednesday and after that we will have a better plan. I actually feel pretty good about this, because her heart rate has been elevated since 2/29.  They think it is infection related but I'm not necessarily convinced.  I would rather KNOW what is going on, instead of guessing that everything is alright and then her having either an emergent episode OR her heart getting damaged.

We are all in good spirits and hoping for the best.  Please pray that the docs can figure out why Carla's heart rate has been so high and that they can fix whatever the problem is.

Love, 
Jen

4/6/16

Easter & Birthday adventures...

On March 21st we were advised that the doctors wanted to do a 24 hour Holter Monitor on Carla to see if they could find any reason for her elevated heart rate. So, we traveled to Helena, picked up the monitor and started the test. The only thing the test showed was that Carla's heart rate was high. Which we already knew, but at least it ruled out anything else being a problem. After studying her most recent echos as well as the holter monitor the team has decided that Carla's elevated heart rate has to do with infection, not rejection.  So, that's good news.   

On Good Friday, we decided it was time to dye Easter eggs.  Carla was so excited that she dyed both the eggs for her plus all of the eggs that I was going to use for deviled eggs.  It was a lot of fun.  I took a picture and sent it to Bobby at work.  He said, "you should do a collage of her dying eggs through the years" so this is what I came up with :)  the top picture is when she was 2 and if you go clockwise she is 3 (in the hospital that year), 4 (in Seattle), 5 (after just getting home from Seattle), 6, 7 and then finally in the middle, she was 8!  She has changed so much over the years, but still such a little sweetheart. 


Her first egg :)

Having fun

Bright Red!

Her eggs :)  
Carla comes home for lunch every day, this was a silly little photo shoot that just happened during her lunch break...

Easter was a lot of fun and as you can see in the picture, she was super excited about getting the Peanuts Movie!  She has never watched Peanuts cartoons but after watching the movie, decided that she loved it and that Snoopy was her favorite character. She loved him because he used his imagination a lot and liked to fly, just like her...

Hunting the eggs that the Easter Bunny hid around the house...

Mario found one!

At noon the town of Cascade does an egg hunt down at the park.  Here are some pictures of our little darling, hunting eggs in her new Easter dress. She's getting so tall!


Unfortunately, by evening time on Easter Carla started feeling pretty poopy.  She developed a low grade fever that persisted every four hours (as the Tylenol wore off).  I took her to the doctor on Monday and they did another sputum culture.  She had finished her most recent antibiotic on the Thursday before Easter.  On Wednesday they found that the same bacteria she had been dealing with for months now  is still the culprit.  After jumping through all of the proper hoops, we were finally able to start an inhaled antibiotic on Friday.  It is one of those 5,000 dollar drugs, so we had to make sure the insurance would cover it and then the pharmacy had to get it.  Finally, Friday afternoon she was able to have her first treatment...
And Saturday was her 9TH BIRTHDAY!!!!

We got her the game she had been wanting...
For her birthday Grandma Wright and I took Carla out to Applebees for lunch.  She really loves their Mac & Cheese and fries... plus, she was super excited about being sung to.
Cheese!

Us Girls

Eating her dessert after being sung to, she was feeling pretty special :)


After lunch we were off to the mall, so that Grandma could buy Carla a birthday present and so that Carla and I could go to Claires and pick out some earrings.  She had originally thought she wanted to get her ears pierced on her birthday, but a couple days before decided she wasn't ready.  So, we went and picked out a bunch of clip on earrings for her!  She was over the moon excited!
With her new emoji earrings...

super happy

She declared, it was the best birthday ever!  
I can't believe our little baby girl is almost a decade old!  Where does the time go?!

I've been getting a lot of questions about how Carla is doing.  The answer is this... She is taking all of her regular meds, plus two about half an hour long breathing treatments a day.  She is still dealing with quite a bit of phlegm, but hasn't had fevers and her phlegm is a lighter color but still pretty sticky. She is very annoyed by the treatments and I can't blame her.  Her heart rate is still elevated (121 to 138 resting). We will see the cardiologist in Missoula next Friday, the 15th for another echo and checkup.  We are praying that this antibiotic does the trick and that her lungs stay healthy for a while.  We have been dealing with this cough since September....

Love, Jen

3/21/16

Monday Monday...

It's Monday morning and we are pretty low key around here.  Carla has had a cold for the last two days and so will spend another day in bed trying to get better.  I feel like our life is on loop and it just keeps repeating.

Last week, after we saw the cardiologist on Monday we heard back from Seattle and they wanted to take a look at Carla's echo.  They have decided that they want to do a 24 hour holter monitor test on her, and that they want us to see Dr. Sticka again in a month.  Her labs looked pretty good, her BNP (which measures how hard the heart is working) was down from 325 to 168, which was good news (trending down is always better than up) but I think we are all a little bit on edge because of the heart rate going up.  It is still sitting 10 to 20 beats faster a minute than her norm.  So, even though there is no damage to the heart at this point, it would be nice to figure out what the problem is and get it taken care of. Let's pray for answers.

Love, Jen


3/16/16

Weekend and Cardio Update

Carla and I had a very busy couple of days! Friday evening we headed off for Helena to see my Dad's band play.  It was a lot of fun and Carla danced up a storm and even met another 8 year old girl who she befriended.  Hi, I'm a girl, your a girl.... you're 8, I'm 8!  Lets be friends forever!  That's pretty much how it went down.

On Saturday we got together with one of my dearest friends, Katy, and her youngest son Andrew, who is 4 months older than Carla. The four of us explored the Made in Montana Fair, at the fairgrounds. There were about one million people there and tons of stuff to look at. Later, we took the kids to McDonalds for lunch and then went to Katy's house and hung out for an hour or so. Carla got to play video games with Will (Katy's middle son who is very techy, like Carla) and Finally, she got to ride a four wheeler for the first time, with Katy's "little brother" who just recently moved back to Montana.

After Dad & Sue got home from church we had dinner at the Jade (our favorite) and headed off to give Grandma her nighttime meds, Grandma was so excited to see Carla and I, she practically jumped out of her chair! I sure do love Grandma Morgan, she is the sweetest and our family has been so blessed to have her. Saturday night I stayed up late visiting with my Dad, and once again, I am reminded just how blessed I am to have such and awesome family.

Sunday we tried out a yummy new pizza place and eventually headed west, towards Missoula for a heart checkup Monday morning.  On  our way out of town we stopped to see Jenny again, she also came to the gig Friday night. After about an hour we were on our way to Missoula. It was fun to cram so much family and friends into one little weekend, wish we could do that more often!

After arriving in Missoula, we headed over and checked in to the Ronald McDonald house, and then settled in for the  night. We had an 8:00 a.m .appointment with Dr. Sticka (the pediatric cardiologist who replaced Dr. Hardy). They did the usual tests and told me that her echo looks unchanged from when we were there in November.  That's a relief! But still doesn't explain why Carla's heart rate has jumped up 15 or 20 beats a minute.  Seattle Children's is going to take a look at the images and let us know if we need to do anything further.  While I feel reassured that her heart looks good, I have to admit that I'm still concerned... I guess time will tell.  I will continue to monitor it and hopefully it will get better with time.

We had to brave some snow on Monday's drive home from Missoula. I swear, it hasn't snowed in months and then we take a road trip and boom, snow!  It wasn't terrible, but did make the drive a little slower.  We were so happy to get home to the other half of our family! Bobby had to work all weekend and then had a class that he couldn't miss on Monday.  So, us girls were on our own.

Here are some pictures from our weekend adventure...

Carla and her new BFF, dancing with Uncle Dan

The 2 Jens :)

Andrew and Carla, in their new trucker hats Katy bought them. 

Carla and Reg, she enjoyed the ride!

Pizza time! 

Snuggling up Grandpa before we had to take off. 

Hanging at the RMH in her new PJs 
Tuesday morning labs...

Thankfully they were easy peasy! 

3/7/16

Getting Better!?

Carla seems to finally be getting better! (KNOCK ON WOOD)! We started a new antibiotic (Ciprofloxacin) last Thursday and the phlegm issue seems to be clearing up quite a bit. Her oxygen saturations have also gone from the low 90s to the mid to high 90s!  Yay! I am a little concerned that her heart rate is up a bit, but we will continue to monitor it and hope that it comes down again. Carla seems to have quite a bit more energy and actually RAN half way to the park on Saturday! She is not a child who ever likes to run, so this seemed significant to me. The rest of the weekend was pretty low key, Bobby was finishing up mid-term week, so had a big paper to write.  And Carla and I were pretty lazy in general. Sometimes you just need to do that! Next weekend I hope to go to my Dad's band job in Helena, so that should be fun :) Pray everyone stays healthy so that we can do that! This time of year is so full of germs!

Yesterday I decided to go through Carla's old medical records to see how much she has grown. I figured out that from the time she was 3 until she was 5 and a half, she only grew 4 inches. (She had the same clothes forever!) And, in the 3 years and 4 months since her heart transplant, she has grown 13 inches! That's an average of about 4 inches a year! My Dad has joked that if she keeps growing at this rate she will be over 7 feet tall.  I am only 5 feet tall, so that would be a little awkward ;)

Thank you to our donor family for giving Carla the gift of a perfect healthy heart...it is doing her body wonders.

Love, Jen

3/4/16

A ray of light in the darkness...

Carla was struggling with a fever all last weekend, Bobby and I were out of town and so Roger and Tammy took very good care of her.  I don't know if I've shared this recently, but Carla has had a terrible phlegmy cough since her pneumonia back in September. She has most recently just gotten off about 40 days of antibiotics... and she is still dealing with the problematic cough. I emailed the transplant team about the cough and fever and called Dr. Maynard, Carla's pediatrician on Tuesday morning. Tuesday afternoon, I got a call from the pediatrician's office and was advised that Seattle wanted us to bring Carla in for yet ANOTHER sputum sample and nose swab to do a virus panel. The nose swab is the worst, because it is painful and she remembers it, because she's had WAY TOO MANY.  There was a lot of crying and fighting involved, and I tell you what, that girl is strong when she is being threatened by the likes of two nurses and a Mommy trying to swab out her nose! Afterwards I took her out and bought her a computer game and we had  a really fun dinner together. She is such a sweetheart and told me, "I'm sorry you had to go through that, and I'm sorry I bit you." I told her, I was sorry that SHE had to go through that, and if she bites me again, I'll bite her back ;)

Wednesday, Dr. Debley, the lung doc from Seattle called. He wanted us to get a chest x-ray as well as to actually see the pediatrician (we just stopped in for cultures on Tuesday). So, we went back to see Dr. M. Wednesday after school. Dr. D was concerned that with us being here that we couldn't run the tests that he felt needed to be run. He was thinking about having Carla admitted to Children's for a CT Scan as well as a bronchial scope to get a sample from her lungs. He was thinking that she might be aspirating to continue to have such a persistent cough. And, because she suffers from a paralyzed vocal cord, aspirating would not be a far reach. Dr. D said that he had planned on calling Carla's pediatrician and that I would hear back from him later. About 15 minutes later, Dr. D. called me back and told me that Carla's sputum sample from January had a certain bacteria that the antibiotics she was on wouldn't have treated! And, that the same bacteria was starting to grow in the new sample. This was great news, because if we just need to try a different antibiotic, that would be way better than having to be admitted to Children's for a battery of tests! Yesterday, I got the call from Dr. M's office that the culture did in fact grow a bunch of the bacteria!  So, I ran back in to town for the new antibiotic!  Let's pray that it works and that Carla will FINALLY get some relief from this horrible cough.

Here is a cute picture of Carla Tuesday at dinner, she is such a little sweetheart...

Love, Jen

2/22/16

Hello!

I've been having a little bit of writers block, probably because I never really have any time alone with my thoughts... busy busy... So, I uploaded my pictures from the last couple of weeks and thought I would tell you all about what's going on with that.

First of all, I've been a Bronco fan since I was a child.  My Uncle Norm used to live in the Denver area and my whole family has had the fun of experiencing a football game at one time or another. My first game was I believe in 1992, when the Broncos beat the Oilers in the last two minutes of a playoff game. Super exciting, nail biter of a game! My last game was a couple of years ago when Bobby and I attended a Monday night game where the Broncos beat the pants off the Raiders.

So, the first picture is of me in my new Super Bowl shirt that Bobby picked up for me!
This year we decided that there would be NO SUPER BOWL PARTY.  The last time the Broncos were in the Super Bowl we had a party, and that turned out to be one crappy day for us and our guests! It turned out to be really fun for Bobby and I. Here we are after the victory!


This Friday, Carla had the day off, and I made an appointment for the two of us to get our hair cut and highlighted.  Carla has wanted lighter hair, and when Cody was a kid I used to color his, so it's not like I could change the rules for her. The stylist was maybe a little bit too subtle, if you ask me... but Carla is excited about it, so that's all that really matters.
Our "before" shot.



Getting her highlights...

Getting ready for the rinse out...

The finished product. 

Another view...

My hair... 
The other week Carla and I watched the live Grease performance on TV.  She loved the "All I Need is an Angel" song that Frenchy (Carly Rae Jepsen) sang in the diner.  So, I went to i-tunes and downloaded the song. Carla is not much of a morning person, so I am always looking for a song or something that will put her in a good mood first thing. The other morning we must have listened to "All I Need is an Angel" 10 times before she went to school. And so, she got out of bed and decided that she was going to dress as an angel. The Angel of Hearts... She is such a little Sweet Pea! Here is a picture of her, dressed as "The Angel of Hearts" (I thought she named herself appropriately).

Carla, dressed as "The Angel of Hearts"