1/11/18

Cardio appointment

Carla had a cardiologist appointment with Dr. Sticka in Missoula on Monday. We drove over Sunday and were so happy to have great road conditions! We rented a room at the Best Western and then had some family fun, swimming and visiting with each other. Bobby doesn't start school again until Tuesday, so it was nice to be able to have him with us for the trip. When we arrived at the doctor's office, there were bunches of sick babies and children. Carla masked up right away to protect her from everyone's germs. 


Dr. Sticka commented about how Carla's heartrate was as good as he had ever seen it and then mentioned that her lungs sound clear. We talked about how she does the vest treatments twice a day and we all agreed that it was probably very helpful to her lungs. After the echo we waited impatient and hungry, but still playful...
Carla, being her cute self. 

Showing off her new plushie, Dill. He's from the UK. 

Family Selfie time...
When Dr. Sticka came back he said that Carla's echo looks good! They are following a little bit of a leaky valve, but that hasn't made any significant changes as of recent, so he was happy.  And we are happy!

Carla has a biopsy scheduled for February 6th in Seattle, followed by 2 days of more doctor appointments.  We are hoping her heart looks good, that the coronary artery disease is not doing anything new, and that she gets a good rejection score. Also hoping that her kidneys show 100% improvement from the septic shock in October/early November.

As far as our daily life goes, it is pretty much all filled with breakfast, meds, vest and breathing treatments, school work, lunch, more school work, meds, dinner, more meds, vest and breathing treatments... We stay pretty busy throughout the day. Carla is doing a really good job on her school work and I feel like she is learning well. It is fun to get to spend the time with her throughout the day.

Love, Jen

1/4/18

December

December was a busy month, full of fun and blessings!  We kicked it off celebrating Bobby's folks' 41st wedding anniversary.  These two are the cornerstone of Bobby's family and we are incredibly thankful to have such loving and kind parents/grandparents. Anytime, night or day, Roger and/or Tammy will be there to lend a sympathetic ear, fix a hot water heater,  or whatever else you could ask for.  We love them very much and wish them nothing but love, happiness and good fortune.  We took them out to dinner at Dante's to celebrate 41 wonderful years!

After dinner from left to right we have Tom & Mandy, Carla, Bobby and I with Tammy and Roger.  It was a fun night out!

Roger and Tammy

Our little Wright group

I'm in this one, instead of Thomas.

Carla and Mandy, snuggling up.  Carla sure does love Mandy.
While on our shopping adventures we came across these mugs... So, Merry Christmas to us, from us.

On December 18th we celebrated Grandma Morgan's 94th Birthday and Bobby's 43rd Birthday. Bobby and Grandma's birthdays are a day apart, so we've been celebrating them together for the past 21 or so years. It was a lovely time, and once again, we are so blessed for this wonderful family that we call ours...
The birthday boy and girl. 

Carla, being a little snuggle bug with Daddy.

Snuggling up Grandpa Morgan.
On Christmas Eve we headed over to Helena to spend time with my family. We enjoyed a lovely prime rib dinner that Sue prepared, followed by presents and visiting.  After that we headed over to my Grandpa Harrington's house for his traditional Christmas Eve party.  We haven't been able to make Grandpa's for a couple of years, because of bad roads. But we were able to make it this year because they had it earlier (5:00 vs. 7:00) and because the forecast did not have falling snow. I was so thankful for that and had a lovely time at Grandpas. 
Bobby and I headed to Helena for Christmas Eve.


Carla with Uncle Andy

Grandma Sue with Carla and Kamden

Bobby and I found my Dad some great Griz thermos cups. He thought they were pretty cool :)


Tristan, with the newest addition to our family, Baby Kynsley Mae.  She is such a sweet little girl.

Carla, super excited about new headphones.

Carla, showing her cousin, Kamden, how to play the ukulele. She was so excited to show her Grandpa how much she has learned.

Playing a song with Daddy.

Playing around on the piano with Kamden.

Our little Wright family, with Grandma Morgan and Andy.
Shortly after we returned to Cascade, Tom and Mandy arrived. We did our traditional Christmas Eve gift exchange and had a lot of fun. The dogs even got presents, and they were super excited!
Opening presents!


Mario and Ranger, Mario doesn't look happy at all ;) 

Christmas Selfies!!

My love, and I.

Tom and Ranger, and Carla and Mandy.

Adam and Jennifer sent Carla this ridiculously cool galaxy lamp for her bedroom. 
Christmas morning we did a few more "Santa" presents and the stuff Bobby and I picked up for Carla. She's totally into galaxy... so she got a new galaxy phone case, pop socket and bedding.
Christmas morning Cody, Angela and AJ came over for a Christmas visit and gift exchange.  It was so nice to see them and we had a fun time visiting.


2017 brought many blessings, as well as heart breaks. We choose to focus on the blessings and cannot wait to see what 2018 has to offer!  

Love and Happy New Year!!!  

Jen

12/4/17

Getting Back to Life, and Lots of Appointments!

Well, November is officially over and just as we were getting back into the swing of being home, we had to fly back out to Seattle for a bunch of doctor visits.

After arriving home on the 14th, I had a meeting with the school and let them know that we think that school is not a safe environment for Carla. We have since been working on her work at home, but I feel like we are in a constant state of being behind (because she missed 3 weeks of school before we were able to get her work). So, it will be good that they have their Christmas break coming up, and that hopefully I will be able to get Carla caught up by the time the new year rolls around. It is our plan to have her participate in some of her classes online, via skype, but they are still working on getting that set up. Nothing ever goes as quickly as I would like it to, and I feel like a hamster running in a wheel, but getting nowhere.

Thankfully, we arrived home in time for Thanksgiving. We decided to have dinner Wednesday night, because Bobby, Thomas, Mandy and Angela all had to work on Thanksgiving.  Thomas, Mandy and Cody also had to work Wednesday, during the day, but we were able to squeeze everyone together around 8:20, Wednesday night! Busy family! It gets harder all the time to squeeze in family time with the grown kids. But, the time we do spend is cherished.

On Thursday, the 30th, Carla and I flew back out to Seattle for a slew of appointments. We arrived in Seattle at 2:00, and had an appointment with the kidney docs at 4:30.  So, we rented a car and hit the road to Seattle. We got there a little early, so they were able to get us in closer to 4:00, which was nice. So far from the labs that have been done, they think that Carla's kidneys have healed a bit and are functioning around 68%. Before the "acute kidney injury" they were functioning around 95%.  So, she still needs some time for them to heal up. We finished up at the hospital around 5:15 and then had some serious traffic to get through to get to Bev's.  We arrived at Bev's house around 6:40, and spent the rest of the night relaxing and visiting. We had to be back to the hospital Friday morning, by 8:00, so left Bev's house around 6:30 the next morning. We had her echo, at 8:00, followed by blood work at 9:00, and then saw her cardiologist after the labs. At 10:30 we saw the immunology clinic and then were able to take a break from 11:30 to 2:30. We had lunch at our favorite haunt, the Yummy Cafe, and then went back to the hospital so that we could just relax and watch our phones ;)
At 2:30 we met with the pulmonary doc as well as the lung function people.  Carla had to do her blowing exercises and they measured how well her lungs are working. The Pulmonologist decided that it would be best for us to start Carla with a therapy vest at home, twice a day. Carla is not thrilled about this plan, but she does understand that it will help get the mucus out of her lungs.  After that appointment finished, we headed down to x-ray and they did a chest x-ray to see how her lungs are looking.  I haven't heard back about that, so assuming it looked alright. We were able to leave the hospital, once again, just in time for 5:00 traffic on Friday. It was dark, and raining, and it took us once again, over an hour to get back to Renton. Bev met us at Applebee's and we had a little dinner, before retiring to her house for the rest of the night. Carla and my plane flew out Saturday morning at 9:40, so Saturday was another bright and early morning. Carla and I were totally wiped out and she is still very tired today. I think she might be catching another cold...  but I'm hoping not. The good news that we got was that Carla's heart pretty much looks unchanged. (She does have some abnormalities that they have been watching for a while, and to which they contribute to her coronary artery disease, but nothing new). Also, they did a bunch of blood work and the immunology clinic said that her immune system is functioning properly, so we have no need to start monthly infusions.  Thank goodness! We will go back in February for another biopsy as well as another full round of appointments.  But for now, it's just back to life.

Love, Jen

Here are a bunch of pictures since being home :)


Getting ready to sleep in her own bed!! 
 The Tuesday before Thanksgiving, Carla got her hair cut!


Feeling light as a feather with a bunch less hair!


Having dinner at Dantes. 

Thanksgiving Selfies!

Our little elf on the shelf. She thinks the elf is creepy, I told her she looks like that elf!

Learning how to write a song with Daddy.

Chatting up the lab tech while getting her blood drawn.


McDonald's has tiny ice cream cones, to help take her yucky liquid medicine. 

Taking the dogs for a walk. (She looks so grown up to me in this picture).

Carla doing math with Mario as moral support. 

Excited that she found a filter that turned her into a fox. 

11/12/17

Heading home...



Sorry for the lack of posting! Wednesday afternoon we were able to head up to the floor for continued healing. The night before, the doctors had put her back on C-Pap at night, even though she was down to 2 liters of oxygen during the day. They wanted to be cautious about making sure she got extra help during the night, so that she could do better during the day. C-Pap did not go well and she was very upset about the whole thing. So, Wednesday night they decided to put her on high flow oxygen, instead of C-Pap.  Unfortunately (or I guess fortunately), that didn't go well either!  I think because she was too well to need the high flow, it was just super annoying to her.  So, Thursday morning during rounds the doctors decided we could take her off of oxygen all together and see how she did. Well, she did fabulously! She saturated in the high 90s all day and even throughout the night as she slept.  So, Friday the docs decided that there was really no reason to keep her in the hospital! So, on the 13th day of her stay, we were finally released to go home.  We have spent the last day and a half at Bev's house, just to make sure that Carla is well enough to travel and, tomorrow we will start making our way home. It has been a very long couple of weeks and we cannot wait to get home! We are going to keep Carla home from school at least through the rest of the month. We want to make sure she has reserves built up so that this doesn't happen again if she catches another cold. This whole experience was so scary, and she went from being perfectly fine, to being on death's doorstep in the matter of hours! Crazy.

At this point, we are working hard at taking care of Carla's mental health. This has been an extremely difficult time for her and she needs to feel like she has some control of her life back. It has been so much for a little girl to go through. She is such a brave, strong, little girl, but even the strongest child is still a child, and she needs to feel safe and happy again. And, that's going to take some healing... I'm sure lots of hugs, kisses and patience will do the trick.

Wednesday afternoon, moving to the floor!


Thursday, off her oxygen and out on a ride to boost moral. 

Friday, getting released!




As soon as their was no-one to bug her, she was able to fall asleep. 


Feeling happy, Saturday morning at Bev's house. 
Please pray for continued healing and happiness.  

Love, Jen





11/7/17

November 7th, CICU day 10

Carla has had a really good day so far.  Last night around 10:15 p.m., the doctors decided that it was imperative to take out her central line (because it's an infection risk) and to put in an IV.  They also said we could discontinue night feeds and take out her feeding tube. Carla was most anxious about removing the feeding tube, because she thought it would hurt. So, we left that alone and did the other stuff right before bed.  We were all exhausted! Our nurse knew we didn't sleep well the night before, so she was really good about making sure we had a quiet night's rest. Also, the docs decided that Carla didn't need to get vest treatments around the clock, so they didn't bother us last night either! I think we both got a good 4 to 6 hours of uninterrupted sleep! It was awesome! This morning, Carla was up at the crack of dawn, and so we got a bit of a jump start on the day. X-ray came and I ordered her a bunch of food from the cafeteria. Her chest x-ray looked much improved and she ate about 1 bite of everything and then told me she was full. At 8:30, the nurse came to draw labs from the new IV, and the darned thing would not give out any blood. So, we did have to get a phlebotomist in to give her a poke for her labs. After that, Carla took her meds and when the doctors did rounds they decided we could go down on her oxygen to 8 liters and then just put her on CPap at night, instead of BiPap. We also decided that it was time to pull the feeding tube. Carla had been gagging and even thew up a little bit this morning, so we decided enough was enough.  When it finally happened Carla was shocked at how easy it was, and felt silly for not letting them pull it sooner.  She also has been feeling so much more like her old self since pulling it. We ordered Chinese food again and when we were waiting for it to arrive, the occupational therapist came and did some work with Carla. Later on a couple of pulmonologists came and evaluated her as well. Yesterday, Bobby headed over to Guitar Center and picked up a ukulele.  He was excited about doing that because: 1) he didn't have a ukulele and 2) Carla LOVES music therapy. This morning/afternoon he's been learning and playing songs while we all sing together.  It has been so much fun! Definitely medicine for the soul. Carla received a package from Auntie Jeannette and Uncle Bill this morning as well. She was excited to open up a sketch pad and some colored pencils! She loves to sketch in her free time, so that was a great gift.

Right now, Carla is taking a well deserved nap. It has been a very busy day and will probably be a long night, so I'm glad she's resting. Here's to continued healing.

Love, Jen

After getting her feeding tube pulled

Thank you Auntie Jeannette and Uncle Bill!

Happy girl :)

Being super silly


Carla's Daddy is her music therapy hero today :)

Feeling happy while listening to Daddy play the ukulele