4/22/18

Life at Home, Away from Home...

Last Monday, the 16th, at about 1:00 p.m., they let us out of the hospital. Dr. Albers wanted to consult with the pulmonary team, because Carla's right lung still had some atelectasis, as well as some fluid. Atelectasis can happen especially after a heart surgery, and is defined by the Mayo Clinic as:  "a complete or partial collapse of a lung or lobe of a lung..."  Luckily, for us, the pulmonary team thought that we did not have to keep her in the hospital, because she had been on room air for over 24 hours, and still saturating in the 90s.  We were so relieved to be discharged, because when you are well enough to be out of the hospital, it is extremely difficult to remain hospitalized! Carla was very "over" the whole thing and just ready to have a little "normal" in her life. 

Getting ready to go!

Getting ready to wheel her out!
The first thing Carla wanted to do when released, was to get Arby's curly fries.  The second thing was to get appetizers from Applebees (car-side service) and go see Grandma Bev.  Bev had tried to get to the hospital before Carla's surgery, but her car ended up breaking down on the highway by the convention center!!  I would have been pooping my pants if that happened to me!!  Anyway, Carla wanted to see Grandma Bev, so that's where we went first thing.  We spent the night at Bev's house and then came home Tuesday morning to get all of our post transplant organizing done. It was fun to postpone all of that for a day, but it was really good to get home, get unpacked, update the calendar with all of the upcoming appointments, organize the meds and make a list of prescription numbers, balance the checkbook, do laundry, breathing exercises, make a vital chart, etc.

 After being home for a while, and bathing, we noticed the birthday presents Grandma Sue and Grandpa had left for her, as well as a box of goodies from our friend, Reva, and her family.

Opening a card from Aunt Diane :)

Presents from Grandpa & Grandma!

Look at these cool Bluetooth speakers!

She's a cool cat, like her shirt!
 Reva sent a box full of packing peanuts and Easter eggs! What a fun way to "hunt" for eggs!

On Wednesday, we had labs and a cardio visit ... everything looked good and we were told that if Friday's appointment went well that we wouldn't have to keep our Monday, the 23rd, appointment...

On Thursday, we decided to drive back to LaConner, WA and check out the Tulip Festival!!! We had gone there, I think the week before transplant, and saw daffodils as far as the eye could see! We were told that the Tulips would be blooming in April, and we had planned on taking my Dad & Sue up there to see them (before we got the call). While we were in the hospital, I decided that we needed a selfie stick, so that we could get a picture of all three of us with all of the tulips.  I ordered it online and looked forward to taking our first pictures with it, at the tulip fields...

Trying out my new "selfie" stick on the way to Tulip Town... I had to make sure it worked.




Isn't that AMAZING!!!
The selfie stick was a success, and we got some cool pictures of the three of us, with the flowers.



When we got home, to the apartment, the trees were showing off with all of their flowers as well!  Washington certainly is beautiful in the Spring!


Friday morning, we had to be back to the hospital for an 8:00 a.m. echo, followed by a 10:00 cardiologist appointment.  We went for the echo and then came home (we are just a couple of blocks from the hospital). Carla had second breakfast (gotta love steroids) and I had breakfast. After that we went and saw Dr. H. She thought Carla's lungs sounded coarse, and so wanted a chest x-ray. We told her that Carla had actually been doing really well with her breathing exercises and that we thought her lungs had improved, but she didn't believe us, and wanted the x-ray anyway. Turns out we were right, her x-ray looked quite a bit better and there was no longer fluid on her lungs. Woo hoo!  She is still clearing junk out of her lungs, and she does still have less breath sounds on the right than the left, but she IS improving :) We told Dr. H that Dr. F said that we could skip Monday's cardio appointment if everything looked ok on Friday.  Dr. H decided to go ahead and let us skip Monday's appointment, as we will be doing labs Wednesday morning, and then be back again for an echo and cardiologist appointment on Friday, the 27th.  Carla does have physical therapy on Monday at 11:00, but at least we don't have to wake up super early and rush off to the hospital for that. With the appointment at 11:00, we will have time to actually enjoy the morning, and we are hoping to walk to the hospital. :) 

Carla has to take 18 pills at 9:30 a.m., 11 pills at 4:30 p.m., and  11 pills at 9:30 p.m., plus 4 puffs of Albuterol, 2 puffs of Atrovent, 2 puffs of Flovent every day at 9:30 a.m., and 9:30 p.m.  PLUS, swishing and spitting Nystantin 4 times a day (totally gross and prevents thrush) AND doing breathing exercises to make her cough (which hurts like hell) as many times a day as we can get her to do it. And, I have to take and record her blood pressure, heart rate, and oxygen saturations morning and night as well.  So, she's still having a less than "normal" life.  But, we are so incredibly grateful for this 3rd chance at life for her, and so excited for what her future holds. She has been busy writing her fan fiction books (the girl's writing block has lifted and the creative juices have been flowing!)

We will have to start her up on school work again this coming week, but it has been nice to let her have a little time to recover too.   We are hoping to visit actual home soon.  So, let's keep our fingers crossed that the docs think that will be alright. We miss our family and dog, as well as all of our belongings.

Love, Jen




4/14/18

Saturday, April 14th





Carla has had a busy day of getting better. She was on about 1/2 a liter of oxygen last night and today we took her down to 1/4 and then took her off all together for a bit. She lasted about 45 minutes, but then started to desat a little bit, so we put her back on 1/4 of a liter. This is practically nothing, so we’re not concerned. 

Yesterday, Carla did some serious turbo walking, and today her legs are super sore. I think it may be the only time she’s ever exercised herself sore. The first time she stood up today she was like “Aaaahhhh! My legs!” So, that has been something to contend with today. Another thing to contend with was that the doc wanted her stitches (from her chest tubes) to be snipped and pulled. She had some serious anxiety over it. Luckily, it went way better than expected, and per the usual, the worry was worse than the actual action. 

She has been tired and is over this hospital stay (as are we all). But in perspective, let’s take a moment to remember she is only 14 days post heart transplant!! ๐Ÿ˜ณ. So, she’s doing exceptionally well, all things considered. 

Today, Carla needed some extra love, so I got in the bed with her for snuggles. We are so blessed to have this little Toot. ❤️

Love, Jen

4/13/18

Friday the 13th

The last couple of days have been somewhat frustrating, because I haven’t felt like we have been moving forward at all. But, finally, today we have been able to transition Carla from the high flow oxygen, to the regular old wall oxygen. She is satting in the low 90s on 1 liter of oxygen. Which is fabulous. 

We have gone for two walks today, in which Carla practically ran. In fact, I think she moved faster than we have ever seen her go!! It’s amazing!!

The plan is to keep us here for the weekend and to discharge us on Monday. I still feel like she is  well enough to leave today, but at least we have a day to shoot for.  Mostly, Carla needs to be off oxygen. And, I’m thinking by Monday, she will be. 

Grandma Sue and Grandpa have been sitting with Carla when Bobby and I take a dinner break in the evenings, they took these cute photos...




After two weeks of fighting this bad boy, Carla FINALLY reached 750!! We are
So proud of how hard she has been working to get better!

Today, Carla got received a package in the mail from one of her teachers. Thank you Mrs. Allen for this beautiful prayer shall ❤️



4/11/18

My Dad and Sue got here Monday night and we spent all day yesterday with them here at the hospital. Monday, before they arrived, Bobby and I took Carla up to the hospital’s garden area, and it was fun to look at the view. I was expecting lots of flowers, but mostly it was places to sit and trees. It would be a nice place to sit and eat some lunch or have a little quiet. Here are a couple pictures from the rooftop...


Wearing her Daddy’s shades. 

Around 5 or 6, Monday night, the lady from the IV Team came to remove her PICC line. She was absolutely fabulous, and it made the process so much easier!!



Carla, line free!!!

Yesterday, during rounds, they talked about holding off on weaning the oxygen until after they looked at her X-ray. And, they ordered an X-ray. The X-ray showed that her left lung was pretty good but that her right one still had some fluid on it. Also, there’s a little bit of fluid around her heart, which is not uncommon. So, finally at about 9:00 pm they weaned her oxygen from 5 liters at 50% to 4 liters at 50 %. She did really well over the night, and wasn’t desatting through the night at all. About an hour ago, they weaned her to 4 liters at 46%, and she is still satting well. 

Mostly what we are doing here is sitting around and waiting. Waiting for them to do the things they ordered. Waiting for Carla to be well enough to leave. We also do lots of breathing therapy to help her lungs get stronger and to help encourage her body to cough out the phlegm.  Yesterday we went for another walk up to the roof. If was a little breezy, but still fun. 

Carla and I

Carla and I, with her Grandparents Morgan. 

Today, Carla has been pretty crabby, but we are all just hanging out together. We made her go for a walk, but her mood is kinda like a wet cat.  She is supposed to get an ultrasound of the fluid on her heart/lung, but apparently it’s not ordered, so we are waiting for rounds (which should have started half an hour ago) so that we can ask them if they want to order that, or if they decided she doesn’t need it. 

I don’t really have much more to report. Please pray for strong healthy lungs. 

Love, Jen 

4/9/18

April 8th and 9th

Yesterday we kept busy with three walks, RT treatments on the hour (done by Bobby and I), learning and playing the ukulele, and we watched The Greatest Showman on the computer.  Carla and I had seen it in the theatre, back in January or something and we just couldn't wait until it came out on video, so that we could buy it and watch it with Bobby.  He loved it too.

Yesterday we were able to wean Carla down to 8 Liters of oxygen at 50% and finally, after rounds today, we were able to wean to 5 liters at 50%.  In an hour or so we will go to 4 liters at 50%, which will be basically nothing. She is holding her own at 5/50, so that is encouraging. During rounds they also ordered that her PICC line be taken out, as it is a clot risk and we don't have any more IV meds running.  We could hold on to it for blood draws, but honestly, the clotting risk isn't worth it, especially since we are getting so close to being discharged and her tacro level was super close to being therapeutic this morning. During rounds the doctor asked about whether or not we needed to do "med teaching" and one of the transplant nurses said "Maybe she could teach us something" (referring to me).  I told them if they can think of anything I need to know, I'll learn whatever they want.

The second transplant is so different from the first, because you don't have all the learning to do, and also, Carla can already take all of her meds orally, and we have a system that ensures that she always gets her meds, without fail.

I have a feeling we will be out of here in the next day or two (if everything keeps going as it has been going). It can't be soon enough for us. Carla is super antsy and just ready to blow this popsicle stand! Life in a hospital bed is making her back super sore and she's tired of random people making her do things. This morning she said, "I just need some fresh air!" Right now, she is taking a nap, but when she wakes up, we are going to go for a walk to check out the rooftop garden. I'm looking forward to that too, it's an absolutely gorgeous day today!

After we get out of the hospital, we will need to stay here for another 4 to 6 months for frequent doctor visits and blood draws. It works out well, because we can stay in our current apartment until February if need be. We are just a couple of blocks from the hospital, so it is very convenient.

I can't think of anything else much to report. Thanks for all the thoughts and prayers.

Love, Jen

During one of our walks yesterday, we ran into this cute little bundle of fur. Carla was feeling crabby (per being in the hospital and us forcing her on yet another walk) but Kaylee, the dog, made her feel like her old happy self.  Thank goodness for Therapy Dogs!!


4/8/18

April 7th

Yesterday was kind of a stressful day.  Friday the docs decided that Carla was well enough to go to the floor, but they didn’t have a bed on the floor, so we were moved to a room down the hall a bit, in the PICU section of the CICU. We weaned her oxygen to 10 liters at 50% and she did fine all day and night. 

Yesterday she woke up crabby and over everything and everyone. She was not putting very good effort into her breathing treatments and guarding her cough. She was also complaining of back pain (which she’s been doing all week-living in a bed is hard on a back). The docs thought she looked great, her echo shows that her heart is functioning very well, they had done an ultrasound of her IJ sites (previous neck lines) and there was no sign of clotting and she just looked great for moving to the floor. So, that’s what we did. 

After moving to the floor, Carla was cranky, so took a nap. Everything was great but after she woke up, she started to desat into the 80s. So, people started to get nervous and turned her flow up to 15 liters. That didn’t help, and then they tell us that the rule on the floor is that they can’t go over 50% oxygen on the high flow machine. Carla has had several desatting episodes on this adventure, and we knew that if we turned her up to 60,70, or even 80% oxygen, she would recover fine and be able to come back down. But, they have their rules, so they couldn’t do that. Finally, we just told them that we were concerned that she’s going to be setting off alarms all night, and people are going to get nervous, and that we don’t want a big crap storm in the middle of the night, so, if they can’t turn her up, or be ok with her lower sats, that we wanted to go back to the CICU. After seeing two CICU docs, and much a do, they all decided that it was ok for Carla to desat as far down as 85% (without setting off the alarm) and that they could have her at a higher oxygen content as needed.  She was turned up to 15/70 for a while and then down to 15/50, where she has been ever since. She is currently satting at 97% and had a fabulous night. Bobby and I did get aggressive about making her use her breathing therapy tools every hour, went on two walks with her and helped her take a shower. I think the shower was the scale tipper! She needed one so badly!!  She does still have some fluid on her lungs (which is why it has been so difficult to wean her oxygen) but the more she moves around, the better she will get. I’m sure we will wean the flow again today and see how she does (fingers crossed!). 

Here are some from yesterday. Let’s hope our adventures today will be awesome!!


Feeling crabby, before our move. ๐Ÿคจ she looks like this emoji. 

Our moving parade. 

The new view!

Before one of our walks. 

After her shower she was craving chocolate, so Bobby ran and got this basket, from Bev,  from the apartment. (she still has 2 more baskets waiting for her there from Grandparents Wright, and Aunt Punky (who we were supposed to have Easter dinner with)). 

Awe, thanks Bev ❤️ this made her night. 

Where she is now, those numbers couldn’t be more perfect. (97 heartrate; 96 oxygen saturation; 18 respiratory rate). 

Love, Jen 

4/6/18

To the Floor!

We were told this morning that Carla is ready to be moved to the floor, but they aren’t sure they have a room. So, we are all packed up and waiting, we know even if we don’t move to the floor, they will
move us to a different CICU room, one closer to the door. They like to put kiddos just out of the OR where we are now. So, one way or another, we will be moving. 

This morning Carla got her pacer wires pulled as well as the Art line out of her arm. So, the only things she has left is the new PICC line in her left arm and her oxygen. We turned her high flow from 15/50 to 10/50 this morning, so hopefully she will switch to regular oxygen soon. That will be a lot easier to manage for stuff like walks and showers. She literally hasn’t showered since last Thursday, so a bath or shower is high on her list of things she wants to do. 

That’s all I have for now!

Love, Jen

4/5/18

April 5th

Carla FINALLY got her PICC line today and they took the IJ line out of her neck! Yay!!

After reviewing yesterday’s echo, The docs turned Carla’s Milrinone (heart function med) down last night and today around 5:15 p.m., they turned it off! We won’t know until tonight if it needs to go back on, but I seriously doubt it. We have also come down on her high flow oxygen- so, she is at 15 liters at 80%. I HOPE we can stay here or move down, but she did have a hard time keeping her oxygen in the 90s today, so we will see. Milrinone was the last continuous medicine that Carla was taking, so now she will be pretty free of the IV pole, which makes me so happy (no one wants to see their daughter on the pole ๐Ÿ˜‚). 

I will look forward to seeing what our next step forwards will be. Here are a couple pictures
From the day. 

Holding pressure on the newly removed IJ site. 

She has her neck back!!

Eating her favorite lunch - Yummy Cafe! Again!

Nummy


They rearranged her room! It’s so much more spacious this way!

4/4/18

April 4th

I feel like Carla may have turned a corner yesterday. She started to actually have a productive cough and has been able to cough up a bunch of stuff from her lungs. The RT who has had her the last 3 nights said that she sounded like a different kid this morning. So, that’s good. Once the phlegm started working around in her lungs, her oxygen stats dropped, but the doctor said that was normal and felt that it would get better soon. The doctor was right, because today we’ve tuned her O2 percentage down, and her sats are sitting around 96%, which is really good for Carla. 

Carla also had an echo yesterday, and her function looks improved. So they were able to come down on her milrinone last night. Her pacemaker has been off since yesterday morning and her heartrate has been right where they want it, so we will eventually be able to pull her pacer wires. And, they were able to discontinue the nitric she was getting with her oxygen to support her right heart function. So, all in all, things are progressing well. 

Today Carla is scheduled for a PICC line at 2:00.
That will be good because it will mean taking the damned line out of her neck. The neck line has been a literal “pain in the neck!”  SO getting that out will be fabulous!!

Getting in and out of bed has gotten so much easier over the last couple of days! No more chest tubes, folly, pacemaker, nitric, etc. with every passing day she becomes less like a patient, and more like a little girl. Yesterday, music therapy came,
So that (of course) made her day! 

Fingers crossed for another day of progress! I’m looking forward to getting rid of the high flow soon as well. 


Learning new chord with the music therapist. 

Trying out our new selfie stick that I bought so that we can go to the tulip festival and get a good family picture. 

Carla looks less amused than Bobby ๐Ÿ˜‚

4/3/18

April 3rd

Today started at 4:00 with getting out of bed, to use the potty, followed by Respiratory Therapy treatments and an X-ray, all before 5:00 am.  Carla had such a busy and sleepy day. She got her final chest tube removed, an IV out, and all of her lines were changed. They are unable to get her scheduled for a PICC line until Thursday at 2:00, so that was disappointing, but what are ya gonna do?  We weaned her high flow and nitric and by the end of the day I’m not sure if we made any progress, because she may not have been ready yet to wean. Although, she was ready for Yummy Cafe (Chinese food), which was made possible by the weans we did yesterday. Carla is NOT a big fan of hospital food, so we end up bringing her a few of her favorite things while we are here. 

Bobby’s folks spent a lot of time here today, because they have to leave for home again tomorrow. It has been a blessing having them here, and we can’t wait to see them again, but we are very grateful that they will be home, holding down the fort and taking care of our pupper. 

The days here are long, and feel like 3 days in one. It is very exhausting, but well worth it. I will be so incredibly happy when this time is behind us and we are back to our normal lives. 

God bless our donor and his/her family ❤️

Please pray for Carla’s lungs to be more dry, they are her achilles heal....

Here are a couple pics from yesterday and today. 


Yesterday, with her long awaited popsicle. 

Sleepy girl, all worn out. 

Ready to be left alone... 

Standing. 

Love, Jen

P. S. I did not proofread this, as it is late and I need to sleep. ❤️ hopefully it makes sense. ๐Ÿ˜