2/22/18

Settling in...

We are settling in to our new life in Seattle. Carla was released from the hospital last Friday, the 16th, and my Dad & Sue headed back to Montana on Saturday.  Bobby packed up a bunch of our must haves and creature comforts from Montana and he and his folks drove up on Monday. We have spent the last couple of days unpacking, getting organized and trying to get Carla all better.  She is still not 100%, but she is definitely on the mend.

Today, we ventured out to Target to get Carla and I shoes for tonight as well as a shall for Carla.  The special occasion is that we will be taking Carla to see Hamilton on tour at the Paramount Theater in Seattle!!! We are all totally excited!

As of yesterday, the insurance has approved listing Carla for another transplant, and she has been listed as a status 2. They are going to request an exception to have her be listed as a 1B, because the coronary artery disease puts her at risk for sudden death. So, we should hear about that sometime soon. It made me really sad to have her re-listed... none of this is what we expected and our whole world has been flipped on its head. Our sweet girl has been through so much more than any person should have to endure in a lifetime... Yet, we aren't willing to give up on her, so this is the only route available to us.

Until our next hospitalization, we will be over here just doing our very best to enjoy every little bit of what life has to offer. 

Love, Jen

2/19/18

Carla was discharged from the hospital Friday afternoon.  My Dad and Sue helped us get all moved out of there and then had to take off Saturday morning for home. So, Carla and I have just been hanging out, getting acclimated to this new normal. It's weird because I feel restless and unmotivated at the same time.  Like I need to get out of here and go do something, but at the same time, don't want to do anything.  Maybe I'll start to feel "normal" again once Bobby is back with us... which should be later tonight, so that's good. As far as Carla's health goes, she is getting better every day, but is still not 100%. She uses oxygen at night and is still overly tired in general. I'm hoping all of that will get better with time. We haven't started with school again yet, because I don't feel like she is ready. And, honestly, I'm not really sure what to do about school.  Should we just continue to do as we have been doing, working with her school, or should we try to get her back in the Hutch School? So many decisions to be made, yet I'm not ready to make them. Two weeks ago, everything was still normal...now everything has changed. It will all work itself out with time, we don't have to know right now, we just need to keep moving forward... so, that's what we will do. 

Love, Jen

2/14/18

Update

We are just hanging out in the hospital... Carla has been struggling with painful, frequent urination, but it seems like we have that figured out and she is finally on the mend.  

We heard from the doctors about the biopsy last Friday and found out that there was no rejection. This is not a surprise, as she has never had any rejection. We just wish the coronary arteries were the same.  It is such a bummer that a perfect heart match, that has never had any rejection, is failing due to coronary artery disease. This is something the doctors don't really understand, but it is the number one cause of a second transplant. 

The doctors have their weekly meeting tonight and they will be discussing Carla's transplant listing and what her status will be. Also, the doc told me that we will most likely be released on Friday. We cannot wait to get out of here, as this is not an ideal way to live. I really hope Carla gets a heart before we ever have to live in the hospital for a period of time. I know people have to do that, but I also know that it has got to be tremendously difficult. We have an apartment that is about 2 blocks from the hospital now, and that's about as close as we want to live to it. ;)  

Carla is bummed out about not being able to go home to Montana, and missing her friends and our puppy and her Grandparent Wright's doggie. But, Bobby and I appealed to her about how much there is to do in the Seattle area, and how important it is to embrace that and to make the best of this situation. Bobby and my 20th Anniversary is coming up in May, and we have been saving for a trip that we can no longer take. So, we took some of that money and purchased Hamilton tickets. Carla is a huge Hamilton fan girl, and their tour is here in Seattle, so we thought: "What the heck, let's just do it!"  It felt so good to tell her that we could do that for her, and for her to have something to look forward to. And, if there is one thing that we have learned from last Tuesday, it is that we need to live for today.  

My Dad and Sue drove over here yesterday, and Bobby flew out this morning to go home and pack up a bunch of stuff.  It is such a blessing to have my folks here, and I cannot even describe how blessed that we feel to have such an amazing village to help us navigate even the most horrendous situations.  

Today is Valentines Day, and I think this is the first Heart Day that we have spent in the hospital.  It feels like we've celebrated almost every holiday at least once, in the hospital. Look at these super cute pictures of Carla, and her Valentine, from Grandma Bev...


Now, that's a bouquet we can get behind!

Please keep Carla in your prayers.  We love her with every little bit of our hearts.

Love, Jen

2/11/18

Oh what a day can do...

Friday morning we were losing our minds with worry, as we prepared to send Carla back to the cath lab to complete the biopsy that they were unable to collect on Tuesday after her cardiac arrest. Her procedure went well and we were so incredibly thankful...

Friday morning, before biopsy
 After sleeping off the sedation, the doctors were able to pull Carla's ventilator. She was upset, tired, itchy,  and confused, but happy to be off the vent.
Friday afternoon - extubated
 All the adventures wore her out and she relaxed a bit.  She had a line in her neck, an art line in her arm, and the incision from the biopsy on the right side of her neck. 
Friday evening - tired 
The incision on the right side decided to bleed and ooz all evening and the night nurse changed the bandage four or five times throughout the night. Carla was coming off morphine and some other heavy duty sedation and became delirious throughout the night. She slept maybe an hour Friday night/Saturday morning... from about 3:30 a.m. until 4 or 4:30.  Saturday morning she was still hazy but starting to feel better. After we gave her 9:00 a.m. meds we gave a dose of IV Zofran (for nausea) and all of a sudden her face rash looked worse, her heart rate went up to 150 and she started talking jibberish again and saying she didn't feel right. We have taken IV Zofran off the list of drugs Carla is allowed to take. After she was feeling a bit better her nurse removed the line out of her neck, and arm, and we finally got the right side of her neck to stop bleeding. They washed and brushed her hair as well as gave her a full body wipe down.  She was starting to feel like a human again...
Saturday - no more lines in her neck or arm 
Friday Afternoon Jackie, the Golden Retriever came for a visit.   Carla was so happy to love on Jackie.  It really made her day!
Saturday afternoon - doggie therapy
Later that evening, we ordered Carla's favorite Chinese food, and Daddy and Carla played some ukulele and sang. When Daddy played, Carla sang.  Then Carla played and sang for us. We were all so happy.
Friday night - music therapy

Friday night - playing and singing to us
Isn't it amazing what can happen in a 36 hour span of life!!  Carla is more and more like her old self with every passing minute. Last night her last IV (on her foot) failed, so she was able to sleep only being connected to monitors.  She does need some oxygen assistance at night, but that's not so bad! 

Words cannot even express the feelings of gratitude that we are experiencing at this moment. We are so incredibly grateful that Carla was in the absolute perfect place when her heart quit beating on Tuesday. We are so grateful that the team provided CPR for those 12 minutes and saved her life as well as her brain. All the love, prayers, phone calls, warm wishes, donations, and messages that we have received do not go unnoticed and without extreme thanks.

The love we've been shown is overwhelming and we thank you all for that.

Love, Jen

2/9/18

Biopsy/PRA results

Carla had her biopsy this morning around 8:00 a.m.  Because it was the first case, they think that they MAY have at least some preliminary results by this afternoon, but we don't know anything as of yet.  Luckily, it was uneventful and she is currently resting off the medication. They will try to get the ventilator pulled today as well. Carla will be SO HAPPY to be off the vent, it has been EXTREMELY difficult for her to live with and she is very unhappy about it. They have been keeping her pretty sedated, and that's hard too.

We did get some good news about Carla's rejection status. After running some blood work the docs have discovered that Carla's Panel Reactive Anitbody (PRA)s are at Zero Percent.  Here is a definition of PRAs, per Wikipedia:

Panel Reactive Antibody (PRA) is an immunological laboratory test routinely performed on the blood of people awaiting organ transplantation. The PRA score is expressed as a percentage between 0% and 99%.  ... A high PRA usually means that the individual is primed to react immunologically against a large proportion of the population. Individuals with a high PRA are often termed "sensitized", which indicates that they have been exposed to "foreign" (or "non-self") proteins in the past and have developed antibodies to them. These antibodies develop following previous transplants, blood transfusions and pregnancy. Transplanting organs into recipients who are "sensitized" to the organs significantly increases the risk of rejection, resulting in higher immunosuppressant requirement and shorter transplant survival. People with high PRA therefore spend longer waiting for an organ to which they have no pre-existing antibodies.

Now, granted, this number may change, but this is really good news for now and opens up the pool of donors Carla could receive a heart from.  Let's hope this number stays low, last time they were at 99%, so it took close to a year to get a match.

Anyway, I need to get to watching Carla wake up and wean from her ventilator.  Fingers Crossed she'll be off by tonight! Thank you for all your love, support, good juju, and prayers.  We appreciate it more than  you will ever know!

Love, Jen

2/8/18

CICU - Day 3

I cannot believe that just a couple of days ago Carla went in for her regular cath/biopsy and came out on the other side of a cardiac arrest. This was literally a photo of her Monday...

 and Tuesday....
It's hard to believe it has only been a couple of days, because it feels like it has been at least a week.

Today Carla had a pretty big day: she weaned down some more off the ventilator; and then eventually had a bronchoscopy. After the bronch they went up again on her ventilator settings; and now we are weaning her again. Carla is scheduled for a biopsy of her heart in the cath lab tomorrow around 8:00 a.m. They were unable to get a biopsy on Tuesday, but still need to know where we stand as far as cellular rejection goes. So, back to the cath lab she will go. During the bronch, the docs were able to discover that she is not actively bleeding from the lungs. YAY! I did actually already know that, but it's good to know for sure (and now the doctors believe me ;) ). They were also able get some good cultures, to make sure there is nothing brewing in there... Or if there is, to make sure we know what it is so that they can treat it effectively. Carla has been suffering with some fevers the last couple of days, and at first the docs thought it was just inflammation from the cardiac arrest, but they feel like it should be clearing up by now, so we have started an antibiotic while we wait for the cultures to come back. We are hoping after the cath tomorrow that Carla will be able to be extubated.

Carla's coronary artery disease has progressed to the point that we have started the re-listing process for a new heart. This is heartbreaking, because her current heart was such a good heart as well as a perfect match. She has actually never shown any cellular rejection to it. Which is why the coronary artery disease is so mystifying. It usually doesn't crop up until much further after transplant, but is the biggest cause for re-transplant.

Tomorrow: let's pray for an uneventful cath/biopsy AND that little miss Carla Coo can get off of the ventilator! It has really been making her mad and she is READY to be free of it!

Thank you for all of the love and support, we really appreciate it.

Love, Jen

2/7/18

CICU

After all of her adventures yesterday, Carla was admitted to the Cardiac Intensive Care Unit. She has slowly been getting better, but it will take time. Today we are working on keeping her calm as well as weaning her ventilator a little bit, with the hopes that maybe by Friday, after the cath lab (to get the biopsy they were unable to get yesterday) they can just pull it. She will really dictate everything. Tomorrow they will do a bronchoscope, to make sure that her lungs are not currently bleeding. She does not show signs that they are, but yesterday there was a lot of blood coming out of her ventilation tube, so it will be good to make sure we won't have a problem with that moving forward. Her blood gasses look good and she is looking good from a neurological stand point. Every time she wakes up, she gets super mad and tries to rip that ventilator out, which leads me to believe she is much too well for that tube. Also, her x-ray this morning looked a ton better than yesterday, so that is reassuring too. At this point, our biggest issue is that she has progressive coronary artery disease and there is no cure for that. The stent that they placed one year ago to the day, was so occluded that it caused her to have a heart attack yesterday. We are so extremely blessed that she was were she was when she was. In a month from now, while just hanging out at home, she would have died from this event.

That's about all I have to report. Thank you for the love, support and prayers. 

Love, Jen

2/6/18

Prayer Request

This morning we checked in to Seattle Children's around 6:15, for Carla's scheduled cardiac cath and biopsy. They took her back at about 10 minutes to 8:00 and I proceeded to find coffee and a breakfast sandwich. While I was eating my sandwich, I heard a Code Blue to the Cardiac Cath called over the loud speaker.  I looked at the monitors and saw that there was one other person in the cath lab, so knew that there was a 50/50 chance it was Carla. Then, they called out the weight of the patient coding, and the patient was Carla's weight. I started walking to the surgery check in desk, to check on her, all the while hoping it wasn't Carla coding, but knowing that it was. When I got to the surgery check in area, a nurse from the cath lab saw me, and took me to a secluded area to tell me that after Carla was intubated and sedated her heart started slowing down and that they were currently administering CPR.  I started crying, cussing God and this fucked up life, and then called Bobby and told him to spread the news that we need another miracle for Carla.

Bobby is currently on his way to the airport, and will be here in Seattle this afternoon. Carla has been stabilized well enough for the docs to proceed with checking her coronary arteries. They think that it is very likely that her prior stent occluded and that that could be the problem that was going on. The hospital called a doctor over from the University of Washington, who places stents for a living, and he is working with our team to now assess what is going on, and to balloon and stent whatever they can at this point. I am just waiting for a page to figure out what is next and how our Nukum Toot is doing.

I just can't believe that this is happening. I am hoping so much that Carla will wake up and be doing well again. I feel so bad that when she told me she was scared last night, that I told her she would be fine and then we would have her favorite Chinese food for lunch, and go to see the birds at the zoo on Thursday. Bobby and I both had a bad feeling about this cath too, but we both just shook it off as nerves. I wonder if we should have done something differently???

I guess now we will just wait and see what happens.

Please pray for our sweet girl.

Love, Jen

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