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

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