Wouldn’t it be fun to write an entire post using all the acronyms we’ve learned since the beginning of this journey? Maybe another day. I’ll brush up on my vocab and we’ll do it another time… perhaps a quiz after? For now, how about an update about the next 4 days following our false alarm….

Day 1 in CICU (Cardiac ICU) – We went through and updated history and meds list for ICU and then Sarah had an echocardiogram, started milrinone, and had a 2nd IV placed. She also had her first dose of heparin (shots stink). Music Therapy, Child Life, Social Worker, and Rainbow Kids all came for a visit to determine needs for keeping Sarah and I occupied and sane through this experience. Much sympathy expressed by medical team for our disappointment, but also hope for a better outcome in the future. We were tired and emotionally spent, but not bored enough to nap. We said goodbye to family, played a couple quiet games and tried to stay busy and distracted til bedtime.

Day 2 in CICU – Sarah woke up with monstrous headache and spent the morning fighting nausea and vomiting, pain, and sleep. The Rainbow Kids’ pastor came by and prayed for Sarah. His humble and heartfelt prayers always bring so much comfort and peace. Heparin was discontinued for a bit because of the vomiting. (They wanted to make sure she wasn’t bleeding.) She received some albumen and diuretics through her other IV (the first one was busy with the milrinone). She felt very “tethered”, but by the time her music therapist came in the afternoon, she was feeling much better and smiled, laughed, and for about an hour kind of forgot she was “sick”. Later, we played some games, colored, and planned our evening movie night. After dinner, Sarah ordered some popcorn and ice cream, and we watched Legally Blonde together. Her awesome nurse even moved the bed and helped us rearrange the room so I could lay right next to her in the recliner without craning my neck! We laughed and had a nice time together.

Day 3 in CICU – Sarah woke up happy and feeling so much better! She received a 2nd round of albumen and diuretics and was responding well to the milrinone. Heparin was replaced by lovenox. It’s also a shot, but half the volume, and only once a day. Her albumen levels were up a little bit, and on 1 liter of oxygen, her sats were at 90-92 all day. Milrinone seemed to be working, but she said she didn’t really feel any better. (Unfortunately, the only real test of the effects of that drug is how the patient feels. Sarah always feels worse at the hospital – who doesn’t? – so it was kid of hard to tell at this point.) Had a great visit from Grandma and Grandpa Brown in the middle of the day. Most of the afternoon was swallowed up with the PICC line. She was so upset and anxious about it when they came to check her veins (with ultrasound). The nurse on the IV team stuck around to explain and show her some things to help her feel better about it. The decided they could use some topical cream to numb the area, and give her some ativan to help her relax and ease her nerves. Music therapy was also scheduled to come before and stay through the procedure. They had a hard time getting it in, but it finally worked and all was well. (I have a really neat story to share about that experience, but it will have to wait for another time.) She doesn’t think the ativan helped at all, but a couple of hours later, she was so zonked we couldn’t even wake her up enough to eat! It was a really rough afternoon, so I was glad she had some help sleeping.

Day 4 in CICU / Day 1 in CSU – We both woke feeling pretty good with news that we’d be moved to the CSU (Children’s Surgical Unit on the 3rd floor) that morning. She was still groggy, but when she decided to take a walk to the restroom, we took the opportunity to wash up and change clothes! I practiced my beautician skills and washed her hair in the sink. (I’m not very good… she said it felt great, but I accidentally doused her shoulder with water.) Aunt Kathy and Uncle Richard came to visit and we made the journey to the 3rd floor. With all the familiar faces (one of her favorite techs) and the ability to have a little more freedom, she was like a new person once we got there. She was smiling, laughing, and acting like the queen of everything. She is so loved in that unit. Nurses stop by just to say hi when they hear she’s back. We had lots of visitors… her cousins Matt and Karly, my cousin Becky and her daughters and Grandma and Grandpa Dixon. Steve and Rachel also came down and the girls spent some time playing a game and then doing manicures. It’s always good for the soul to have sister time. Steve and I went for a walk to have an hour or so together before I left, and then it was time to say goodbye again. (That’s one of the hardest things about all of this…being apart. We don’t function very well that way, but it’s necessary, so we just do the best we can.)

I haven’t been privy to the ins and outs of the days since then. I’ll leave that to Sarah and Steve to fill you in. I do know that there has been some game-playing, song-writing, puzzle-making and relationship-building going on. Things are generally going well with the new therapies. Everyone’s still hoping for a release by the weekend.

~Julia

I’ve started this post several times and can’t figure out exactly how to explain all that we’ve been through this week and what we’ve felt. I wish I could rewind the past few days to get it all down one day at a time, but I’m also grateful I can’t because I really don’t think I would want to relive it.

High… Overwhelming Disbelief, Excitement, Anxiety, Joy, and Gratitude – Tuesday night, January 22nd, just 5 days after Sarah was officially listed for transplant, she got the call. None of us could believe it. She was at Grandma and Grandpa Dixon’s house spending some time with them. Her phone rang and as she looked at her phone, she just knew… She answered it, and began to cry so hard she couldn’t talk. She was bombarded with so many emotions at once, she couldn’t even think. Meanwhile, Grandpa (my dad) called me to tell me she was talking to them on the phone, that there was a heart for her, and we needed to get ready to go. I knew he wouldn’t joke about something so serious, but I honestly couldn’t believe what I was hearing…. I hadn’t even made my packing list yet! Steve could tell by the look on my face, and called all the kids into our room. We cried and laughed, and started running around like maniacs packing through tears while Mom and Dad brought Sarah home. Nathan, our 7 year-old came in and said, “So, are we celebrating?”

Continue reading “Emotional Highs and Lows” →

As you can probably guess by the picture….I AM ON THE TRANSPLANT LIST!!!!!! The transplant coordinator called me tonight to tell me that the insurance accepted to request and that they listed me this afternoon. So, that means that I have to have my phone (and pager) on me, full blast, at all times. I can stay at home while we play the waiting game. At the University, we were told that once I got to a certain point on the list, I had to come down to Salt Lake. But I guess it’s not the case at Primary’s. Which is weird because it is all the same list…. Oh, well. I am not going to question it! 🙂 Ahhh!!! I can’t stop smiling…but if I think about it too hard, I start crying. Sigh…. Thank you all for your support, love, hugs, texts, calls, messages, e-mails, prayers, thoughts and anything I missed.  And now, we wait….like crazy!!!

When we met with with Dr. Everitt last week, we talked quite extensively about keeping Sarah healthy (especially during this cruddy flu season) so when a heart becomes available, she will be healthy and ready to receive it. The doctor got a little tongue tied and told us to be “viligent”. So, we’ve adopted a new word in our vocabulary…

VILIGENT adjective \ˈvil-ə-jənt\ alertly watchful especially to avoid danger with steady, earnest, and energetic effort; VIGILANTLY DILIGENT

We’ve got masks in the entry way, and sanitizer in every conceivable place in the house. And now Sarah lives in a “bubble” because her parents are paranoid and crazy. …And viligent.

~Julia

One of the things that I (and a lot of other people) love about Sarah is her ability to smile her gigantic happy smile through everything. She has the most amazing attitude, and her perspective is wide open. She seems to be able to see more of the “big picture” than some of us, and always sees the brighter side of things. Attitude truly is everything, and when you have so very much you could complain about, it’s amazing how often she chooses not to…at all.

At our appointments last Thursday, she met with both of her cardiologists. Dr. Yetman asked Sarah how she was feeling. “Pretty good,” was the answer. “How’s your swelling?” “Not too bad. I can still wear my shoes.” Dr. Yetman lifted her pant leg to see some pretty swollen ankles and just chuckled as she turned to the student who was with her and said, “You’ll never hear this one complaining. You have to kind of read between the lines.” A very similar conversation occurred with Dr. Everitt. “Sarah, how are you feeling these days?” “Pretty good. I can still wear my shoes.” A smile. “How’s your belly?” ” Not too swollen. I still need a belt with my pants.” She smile again, and shaking her head she said, “Sarah, you and your Mary Poppins attitude….” I just couldn’t help but smile at Steve. She’s come a long way with that attitude, and I can’t help but wonder if she has that attitude because of all she’s been through, or if she was born that way to help her cope with all she’d go through…. Either way, I’m so proud of her and so grateful to have a child that can still find joy even in the most miserable of circumstances. Mary Poppins….practically perfect in every way.

~Julia

….Or is it being anti-social? I don’t know! Because I have to be healthy the whole time I am waiting for my heart, I have to avoid large groups of people. For example, I can’t go do things with friends anymore….unless it is at my house (or theirs where everyone is healthy) with one friend. But, they have to be perfectly healthy. It’s kind of a bummer because I have so many friends that like to go to lunch, or bowling, or to a movie together and they always invite me. Well, because of my “bubble state” I have to be in, I have to turn them down. I can go into public places, just as long as I don’t sit next to anyone, if I wear a mask, and if there is hardly any people there. Anyway, back to what this post was originally going to be about. Dating.

In November, my young adult singles ward had a silent auction activity to raise money for Primary Children’s for “Pennies by the Inch.”  Two of my friends were auctioning off a double date with them. I was one of the girls who won. : ) During my doc appointments on Thursday, one of the boys texted me to see when would be a good time to do it. I told him that pretty much any time was fine but I had to avoid lots of people so dinner, movies, pretty much anything public was out of the picture. So he told me that he would figure out all the details and then run it by me…just to make sure I was still in my “bubble.” The next day, he texted me back to tell me that the double date was a no-go but he would still love to take me out. After discussing it with my Dad, we finally came to the compromise that if we did the date here, I could go out with this guy still. So, I texted him back asking if it was a possibility to do it at my house. Being the fantastic guy he is, he was totally chill with coming here. : ) Since the plan was dinner and a movie, he brought dinner here and we went and got a movie from redbox. It was a fantastic night! I felt so special that he would want to go out with me bad enough that he didn’t mind coming into my bubble with me. : ) I am so glad that I have friends like him! : o)

Thursday we got to go back “home” again! Because the University of Utah’s surgeons were uncomfortable doing the transplant on her complicated and unique anatomy, we went to Primary Children’s Medical Center for their transplant evaluation/orientation appointments. We have already done all the required testing for the University, so it was mostly just a lot of information. She had an x-ray and lab tests to update some of the eval tests, but pain-wise, it was a very easy day. Emotionally and stress-wise, not so much. We met with lots of people we’ve already seen and love, and met a few more that we’ll see again and most likely grow to love. Switching back to PCMC for this adventure also greatly reduced the number of teams following her and communication and records will be much easier to handle. Dr. Everitt is the transplant cardiologist and works very closely with Dr. Yetman in the same cardiology department. In addition, Dr. Jensen, the liver doctor at PCMC who first referred her to the University will also be following up with her liver health through this experience. (Yay!) We don’t have anything against the Univeristy…they took great care of us. It’s just a sterile adult hospital, and apparently we’re just not ready to grow up yet! …It just felt so good to be back “home”!

Continue reading “Back Home Again” →

“So much in life depends on our attitude. The way we choose to see things and respond to others makes all the difference. To do the best we can and then to choose to be happy about our circumstances, whatever they may be, can bring peace and contentment.”

— President Thomas S. Monson

I don’t know how many of you get annoyed by all the drama, sadness, and doom Facebook has to offer. I do. Sometimes it’s almost enough to deactivate my account. Every time I open Facebook, there is that pressing question. Facebook is always asking, “How’s it going, Sarah?” I never want to let my bad days, sorrows, physiological questions/thoughts clog up my friends news feed or have others pick apart and find fault in them, so I will most likely post something generic (like: I went sledding today. it was fun or I like ice cream.). Today wasn’t that case. Since my article in the paper on Sunday, I have been getting texts, emails, phone calls, notes, hugs….and I’ve feel sooo humble and full of gratitude and I couldn’t just let it sit there…I had to express it!! I would like to share what my Facebook status said today, “Facebook is always asking me, ‘How’s it going, Sarah?’ Well, I will tell you, Mr. Facebook. I am overwhelmed and so grateful for all the love and support my friends and family (and some people I don’t even know…) have given me my whole life. I love them all sooo much. I am soo glad that each one of them is in my life. I am so happy that I know the Church is true and that I know that I have a Heavenly Father who loves me. I am soo blessed. Even though this life isn’t what I thought (or even what I want) it would be, I know that I will be able to make it through this with the help of my friends, my family, my Father in Heaven, and my Savior.” Thank you for listening to my little rant. Now you may go and enjoy the rest of your day. But please remember (or at least think about) what you are grateful for today…and don’t forget to smile! 😀

— Sarah

I sort of told you all that I had to catchup on: multiple tune-ups and California. So first off I’d like to start with the tune-ups. I’m sure we have explained before but I will explain what my “tune-ups” are and why I have them. Because of my Protein Loosing Enteropathy, I don’t absorb proteins like I should. A side effect to PLE is tons and tons of swelling. Sometimes the swelling gets so bad it hurts to even wear jeans or shoes. So I have to go to Primary Children’s to get IV Albumin, or proteins, to bump my levels back up to “normal.” While I am there, I also get IV diuretics to get as much of the swelling off as we can. Lately the over night tune-ups turn into week long tune-ups. Mostly because I have a funny reaction to something they gave me boost other low levels, or because the other PLE symptoms (vomiting and diarrhea) decide to come out and play too.

California time!!!! : ) In an earlier post I said that my family and I were going to go on a family trip to California before I had to live in Salt Lake. We were never sure when would be a good time to go (the doctors wanted us to go before Halloween, while the original plan was to go right before Christmas), so one day we just decided to the first week of November. I think that was perfect timing. In Disneyland/California Adventure, Christmas was just getting put up. Mom and Dad had jammed something into every minute of the whole week! It was a great experience. I don’t think Dad knew the meaning of the word “no” that week…. There were so many great things…but most of them are little jokes and just little things that made the trip wonderful. So let me just give you the “big picture” of that week…

Saturday: We went to the airport and got on the plane. (It was all three of my brothers’ first time flying. They thought it was pretty neat how something that heavy can fly. Me? I just choose not to thing about it…) When we got there, we stopped in Oceanside and had milkshakes at Ruby’s Diner on the Pier. (Rachel and I went to Cali in March last year and stayed in Oceanside…It was fun to be there again.) Then we headed to the hotel in San Diego and hung out there the rest of the night.

Sunday: We stayed in San Diego and went to the Botanical Gardens, the Mormon Battalion Visitors Center, the San Diego Temple, the tide pools, and the beach for my brother’s birthday.

Monday: Sea World…all day!!

Tuesday: Hollywood and Universal Studios. (It’s a very intimidating city for someone who grew up in Pocatello, Idaho…)