7/5/18

Doing Great!

Since being released from the hospital on June 8th, Carla has been doing so very well!  On June 21st she had a CT Scan and following that, we decided to head down to the Seattle Aquarium and check it out! We haven't been in about 5 years and we had a great time.  After that, we walked down the waterfront and went to Ivar's for a little clam chowder (our favorite). I thought walking all the way to Ivar's would be too much for her, but she made the whole walk! By the end of the day, her legs hurt, but she was never winded. We are working hard on building her stamina, as her little body is not used to all that walking! When we got back to our apartment, I checked my phone and it said that we had walked 2 miles.  Which, is fabulous for Carla!  Here are some cute pictures from the 21st.

Walking to the Aquarium

Checking out the wave tank.

Touching a star fish (she said it felt like bumpy foam). 

Look at all the Jelly Fish!!

Carla, with her new little buddy, the otter.

We had to hit the gift shop and buy a stuffed odder.  She named him S'more, because he is the color of s'mores.  ;)

Waiting to be seated at Ivar's 

Yummy, clam chowder!

On our walk back to the car.  We were able to find some huckleberry ice cream on the way!
On the 22nd, we had an appointment with the infectious disease team (because they ordered the CT Scan). The doctor looked over the results with us and told us that her lungs looked great!  I got to see the imaging, which is super cool! You could see both of her lungs filling up with air, as she breathed in.  This was the best news we have gotten in a very long time!!

On Monday, the 25th, we had an echo first thing in the morning, followed by a cardio appointment and blood work. Afterwards we went back to the apartment, did her lung treatments, finished packing up the car and hit the road!  We made it to Spokane later that evening.
Us girls, hitting the road together!
We got home Tuesday evening and have been on the go, go, go ever since!  On Wednesday, we took some time to play with the puppies for a while. We were watching Cody's puppy, Hadlee, so that was a lot of fun.  Carla loves her some puppies (and they seem to like her a lot too!)
Carla and Hadlee

Good thing she has two arms, for petting two dogs!

kisses!
Puppy snuggles. 


Car and Shar.  She says Shar is her "spirit animal" because she is quiet and slow.  


Mario, wanting us to throw his ball. 

Carla, having a pretty perfect moment.
 Later on, Carla wanted to go to the pool and see if she could find any of her friends. She hadn't been cleared to swim yet, but thought it would be fun to bring her towel and sit by the pool. When we got there we saw that they were having a fundraiser for the pool, and people could paint a brick for a donation. Carla painted a flag, in honor of Pride month. She didn't get to finish it, but we will get it done eventually.  She wanted to write the words "Be Yourself" on the flag.  She is so sweet.
Painting.
While Carla was painting, we got a response from the team about whether or not Carla could swim. The docs agreed that if the pool was chlorinated (which it is) and if Carla doesn't swallow the water (which she doesn't), that she could swim.  She was so happy - and especially happy when she saw one of her best friends there! 
On Thursday, we took Carla out to lunch, and then to see Incredible's 2. The movie was great! When we got home, Bobby's cousin, Dawn and her family were visiting from Vancouver, WA. Carla got to meet her second cousin, JJ, and they both enjoyed playing some ukulele together!  It was a fantastic time!

Beautiful, talented cousins. 
On Friday, Carla and I went to Helena, had lunch with my Dad & Sue and then went over and visited my Grandma Morgan.  I, unfortunately, don't have any pictures, but I do have the sweet memory. My Grandma has a lot of memory issues now a days. But, no matter how much she forgets, she always remembers that she loves us, is always so thankful that we came to see her, and she always reminds me of how lucky I am to have had such an amazing Grandma throughout my life.  She has shown this family love, like no other.  We are very blessed. 

Over the weekend, Bobby was able to pick up a two night gig in Lincoln, and so Carla and I stayed home and I was able to do a lot of unpacking. On Sunday, one of my best friends made the three hour drive from her house to ours, for a little visit. It was super fun to see Jenny! 

Monday, I got my hair cut and Bobby ran a bunch of errands!  Tuesday, we drove over to Helena and bought fireworks from another of my best friends' firework stand and then ran to Walmart to pick up food for the 4th (our house is still lacking in the food department, because we haven't really lived here since February)!  

Tuesday evening, we walked down the road, because our neighbor was having a block party.  I'm kind of an introvert, so it's always hard for me to commit to parties (socializing can be taxing for me) but I have to say, I am so extremely happy that we went!  We had such a great time, and we have some really fabulous neighbors!  Carla actually played with the kids (which is something she has never had the stamina to do)!  They lit off fireworks and just had a fun time!  I loved watching her!  It was amazing.  
And finally,  yesterday was the 4th of July!!! One of Carla's best friends came over for a couple of hours in the morning, and around 3:00 we went to the Baptist Church for a BBQ. We used to live next door to the Baptist Church, and Carla would go over on Wednesdays for what they called "Badger Pit".  Those kids have been praying for Carla and the church leaders decided to donate their earnings from the 4th of July BBQ to us, to help with our adventures in medical travel, etc. It was so thoughtful for them to think of us, and we feel incredibly humbled by all the love and support our community has shown us. For the rest of the day, Carla was pretty spent, because she had gone to bed around midnight the night before and woke up around 7:00 a.m.  But, she did perk up to light fireworks when the sun started to go down. 
Bobby and Carla...

Getting ready to light this little spinning panda.

Bobby's Dad & Uncle Rich. 

Bobby and I 

These two are adorable. 

Cody with his family, Angela and AJ.

This trip has been amazing, and I am so sad that we have to head back to Seattle soon!  Saturday, at the Eagles on Fee Street, in Helena, at 1:00 p.m. there will be a benefit that our band family is putting on for us!  I hope to see some good friends there! There will be 4 bands, including my Dad's band  and Bobby's. It should be a fabulous time and once again, we are so humbled by the love and support that has been shown to us. 



 Here are the fliers that I have seen for the benefit. 

Sunday, we will leave from Helena to make our way back to Seattle.  On Wednesday, Carla has an ultrasound of her diaphragm as well as physical therapy.  On Thursday, she sees the Pulmonologist and on Friday, the 13th, she has a biopsy.  Let's pray everything goes perfectly.

Love, Jen





6/16/18

Living Life!

Carla has been doing great since we have left the hospital.  We are still doing 4 vest treatments a day, and bi-pap at night (which she's not a big fan of) but, her oxygen levels have been in the mid to high 90s (Yay and pretty unusual for Carla) and I can hear better breath sounds in that right lung.  You can tell that the right lung is still diminished, compared to the left, but I can also tell that it is getting better.  I really feel like with time, she will be able to come off of bi-pap and hopefully transition to less vest treatments a day. The hard thing about 4 treatments a day is that it is super hard to get out and do anything, because you have to be home to do the treatments, or at someone's house (and you have to cart the big ol' vest machine around)... But even with all that being said, we have found time around treatments, for fun!  The last week we were in the hospital, my Dad & Sue came up for a visit. At that same time, Bobby had to run home for a band job and when he came back, he brought his Mom!  So, we have been having a lot of family time. 

Thursday, June 7th, we were supposed to be released from the hospital, but we were unable to get a bi-pap machine secured, so had to stay another day. This was extremely frustrating for everyone, but especially Carla.  So, I asked if we could get a pass to leave the hospital for awhile. They said yes and gave us a four hour pass! During our little break, Grandma Sue and Grandpa took us out to lunch at Red Robin! Here is a shot of Carla, eating cheesecake. This girl never says no to dessert!


Carla walked so much during her little four hour break from the hospital, that she ended up being so extremely sore that she could barely walk the next day! It really is amazing how fast the human body atrophies, and how fast it also bounces back!

So, we were finally released on Friday, the 8th of June. My Dad and Sue stayed until Sunday, and Bobby and Tammy arrived Sunday evening. On Tuesday, the 12th, we were able to get together with Bev and have a really terrific meal at a place called Wally's Chowder House in Des Moines, WA.  We had a lot of fun and the only thing better than the food was the company!
Grandmas Bev & Tammy

Fish Tacos and Beer!  Yummy!

My Loves


Of course, we had to have dessert too!

After over a 10 pound weight loss while being hospitalized, this is actually good for her :)
On Wednesday, we were able to drive up to Tacoma and visit Tammy's sister, Cathy (or Punky as we call her) as well as Bobby's cousins Tina and Dusty. It was so great to see them.  It's pretty amazing how we could live so close, and not see more of each other.  Although, it did take 2 hours to drive the 40 miles to Punk's house.  So, that's part of the problem. In Montana, we don't think about it, but we are so incredibly spoiled to not have to deal with traffic! You literally have to plan your life around the traffic, it is awful!

On Thursday, as promised, Bobby and I took Carla to the Tukwila Family Fun Center! We devised this plan before she was released from the hospital. Sometimes, hospital life is made better by making plans for when you are set free.  We had so much fun and I was extremely impressed by how much walking Carla did without tiring!  She even went up and down a bunch of stairs, twice! AND, she wasn't even really sore the next day!  Like I said, amazing how fast the body can heal!  

Here we are after our first ride, the bumper boats.  We soaked each other pretty good!

After that, we had to go inside and dry off for a bit.  Here Carla is killing zombie Rabbids!
After we got our fill of video games, we went back outside for go carts, mini golf, and finished off the day with more bumper boats!
Mini Golf!
Family Golfing Selfie!

These two, ready to soak each other again! I had to sit this one out, because I was finally warm and dry. 

ATTACK!!

On the way home... she was out in minutes! Such a long, fun day for us!
Yesterday was mostly spent packing extra stuff in our apartment to take home, because Bobby and his Mom are leaving tomorrow. Bobby is starting an internship on Tuesday (for his degree) and he also needs to get back to work!  So, Carla and I will stay here until after her appointments on the 21st, 22nd and 25th, then we will come home for a visit (and to enjoy the 4th of July at home) and be back again for more appointments the second week of July. As of now, we will be doing A LOT of back and forth. We need to get the official OK, before we can move home to Montana. I think we will all feel better about us moving home after her right lung starts sounding more like her left lung.  But, for now we will be able to make short trips home to visit our life, and back here for appointments.

Please pray that Carla continues to get better and better, so that she can really start enjoying her childhood!

Love, Jen

6/7/18

We're still here...

Apparently the Universe caught wind of the fact that we were planning on blowing this popsicle stand today... So, we are still here.  Try as the Discharge Coordinator might, she could not get all of the ducks in line for us to be released today. But, she is "98% sure" we will be able to leave tomorrow. Getting the Bipap approved and lined up has been the difficulty.

Luckily though, the doctors gave us a four hour pass, so that we could go out in the world today! Carla wanted to go to Jimmy John's, then Yummy Cafe, but finally decided on Red Robin! So, Red Robin it was, and she ate like she's been starved down and eating hospital food for three weeks ;)

Carla had a chest x-ray today, and it looked absolutely beautiful! You could see two full lungs and everything!  I was ecstatic!

We were extremely disappointed when we heard that she wouldn't be able to leave today, but getting a break really helped to refuel and Carla is feeling happier again.

Let's keep our fingers crossed that leaving tomorrow will be fast and easy.

Love, Jen

6/6/18

Shhh...

We have a little secret, but you can’t tell the Universe (because making plans is always our biggest downfall)....

Carla is set to be released tomorrow!!! 

6/5/18



Hey, pause for a second. *record scratch*
Hi! It’s Carla! I just wanted to pop in and give a message.
*deep inhale* IF YOU ARE ARE NOT SICK RIGHT NOW THEN REMINISCE ON THE ONES WHO ARE! BE GLAD YOU AREN’T SICK AND GO OUTSIDE AND GO SOMEWHERE AND GET OFF YOUR BUTT. DO IT FOR ME
Ok thank you. We shall resume. *record resume*

Ok then... that was your message from Carla. She is feeling so much better everyday, but obviously, feeling very cooped up and missing life outside of these hospital walls. Let’s pray she’s released soon. Her Grandparents Morgan arrived today ❤️ we are so happy to have them here!!

Love, Jen


Carla is doing really well today so far. She’s been on room air and saturating in the high 90s, which she honestly hasn’t done since transplant. We have gone for a walk and she seems very comfortable in general. The docs have decided not to do anything about her diaphragm, because we are not sure if the lack of movement is caused from the collapsed lung or vice versa. They seem to think she will have some fluid on her lung until the collapsed lung issue clears up, which could take 6 months. We will continue to do bipap at night to prevent things from getting worse. I foresee us being released soon, but no one has said as much. 


Love, Jen

6/4/18

June 4th - Day 18

It's not quite 7:00 a.m., on Monday morning.  Over the weekend, they pulled Carla's chest tube, and so far she has been doing good (but we haven't seen her x-ray this morning yet). They did an ultrasound of her diaphragm after the chest tube was pulled and they did see that the right side is not moving. Which, is not ideal, but isn't as bad as if it were moving the opposite of the left side. The doctors have yet to come up with and present a plan to us about this. There are a couple options (do surgery vs. do nothing) and we need to weigh the risk to benefit ratio before making any big decisions. It's complicated with Carla, because we are dealing with different teams, and everyone thinks the other part of the body is to blame. Example: the lung docs think the heart is causing problems and the heart docs think the lungs are the big problem. Also, the lung docs think the diaphragm might be working differently because of the collapsed lower right lobe and the heart docs think the diaphragm caused the right lower lobe to be collapsed/have an effusion.  So, we are still ironing out details.

Yesterday morning, when we went to take Carla off of bipap and put her on high flow, she maintained her oxygen saturations, so the ICU docs said she could just remain at room air. They also decided that Carla was well enough to be transferred out of the CICU and onto "the floor".  She was holding her oxygen just fine and then around 5:30 the floor resident came and said that the pulmonary doctors wanted to put Carla back on high flow and said that her work of breathing had been harder. When they put her on high flow, she started to tank into the 80s again. Around 8:30 I took her off of high flow and let her have a long awaited, and long deserved bath! I took her off of oxygen while she was in the tub and when she got back into bed we had to wait for the RT to come and put her back on high flow, so I just left her at 2 liters of oxygen, and she was doing amazing. She was put on bipap for sleeping and now she's back on high flow, but her numbers don't look any better than they do with nothing at all, so we are pretty annoyed and will be pinning them down during rounds about why she needs to be on high flow (especially when they have her at 6 liters at 21%, 6 liters does nothing for opening the lungs in a child Carla's size and 21% is the amount of oxygen that is in room air).  My eyes are rolling as I type this. So yes, Carla is not the only one that is "over" being here. And, I understand that it is necessary to get her better, but it would be A LOT less frustrating if they could come up with a plan and stick to it.

I'm not sure what the plan is today other than I know she will need to get an x-ray before 8:00 a.m.

Thank you for thinking of us, and for keeping Carla in your prayers.

Love, Jen

6/2/18

Making Progress

Yesterday Carla had a really good day as far as oxygen requirement goes. We were able to take her from 12 liters at 80% oxygen down to 8 liters at 21% oxygen.  21% is actually room air, so she's at room air blowing at 8 liters. She is still doing the bipap at night, and I'm assuming that will continue for the long run. Yesterday they "water locked" her chest tube, which basically means they took it off of suction. It did not put out a lot and her x-ray looks basically unchanged from yesterday, so the plan today is to pull the chest tube. After they pull the chest tube they want to do an ultrasound of the diaphragm.  With the theory being that if her diaphragm isn't working right, it would be the cause of the effusion, because the cause is still a mystery. We will also try to wean her high flow from 8 liters to 6 liters, and see how that goes.

Carla has been in a super crabby mood (on an off) and she is totally over being here. I can't blame her. We are trying to keep her spirits up, but it's hard and I understand her frustration. It feels like she is constantly being required to do something or be subjected to something and all she really wants is to be left alone. Today they will pull the chest tube and they will also remove her right wrist IV.  We aren't using the IV anymore, because her full 14 day course of IV antibiotics finished up yesterday, and three of her fingers on her right hand have been numb for days.  So, we will get rid of that today.  You would think that removing things from her body would make her happy, but to Carla it's just one more painful procedure. Something more being done to her that she has no control of. So, she's not thrilled about it.  Luckily, they will give her some pain meds before the removal of the chest tube, so they will pull the IV at that same time too.  Hopefully that will help. After the chest tube is out, we can resume vest treatments, probably 3 times a day. She's not going to love that either, but the hope is that we can get her right light to re-inflate, and get the excess phlegm out. On that note, they started another breathing treatment to break up the phlegm, so that's twice a day as well.

Yesterday Carla went on a couple of walks, and up to the rooftop garden as well.  The garden is much prettier at the end of May, than it was in April.  There were tons of flowers, which made us really happy.  We will go back there today.  After the chest tube is out, it will be so much easier for Carla to be mobile.  So, I'm looking forward to that.

Love, Jen

Doing some coloring yesterday. 

Pretty flower!

My loves.

The bumble bees absolutely LOVED this flower.

Some more flowers, the bees loved this one too, maybe their favorite color is purple, like Carla.