We’re so excited to have Sarah home! Been teary all day long. Just can’t believe today is her 3-month-aversary. To celebrate her homecoming, we’re having a little casual “open house” in our back yard tonight beginning at 7:00 at 400 Fairway Drive. If you’re healthy, we’d love to see you, our dear friends. Oh, how grateful we are for all your continued prayers and faithful support.
Sarah was totally amazing today! The anesthesiologist suggested she try doing her biopsy without sedation today. He promised she wouldn’t feel anything and that if she got nervous, he could immediately give her something. He gave her a little cocktail to make her more relaxed while they numbed the site, but she was totally awake. Recovery was quick, she felt good, and all the anxiety she used to feel seems to have been replaced with courage to match. Here’s how she looked only 10 minutes into recovery. She’s a totally different girl than 6 months ago.
It was a very long, tiring day, with a ton of waiting in between, but the things we found out four and six hours later were worth every moment of waiting!
- ALL of the pressures in her heart were about half as high as they used to be, and are quickly nearing normal levels.
- Her BUN (the number that tells about her overall heart function) had been in the 800 range, and each biopsy it comes down by half. Today it was only 200ish, and so much closer to normal (around 100).
- One of her DSAs (donor specific antibodies) is now undetectable. The others are unchanged, which is good because it means they haven’t gotten worse and she hasn’t created more. One gone also means the overall percentage is down.
- Her biopsy is perfectly CLEAN!
- Her beautiful, perfect angel heart is healthy and happy!
So… we are going HOME!!! I really can’t believe how the goodness just keeps coming. It’s amazing and we’re so grateful. We are so excited to be home together as a family again!! We’ll be back to Utah every two weeks for a while, but we’re so happy to move back home and just come for “visits”. Thanks Salt Lake, you’ve been very good to us. Adios. Arrivederci. Sayōnara. See ya later, alligator!
Hope you’re in the mood for some reading. This is a really long post, but it’s a wonderful story, and I had to share.
Sarah’s little friend, Zack is doing so well. Thank you for your prayers on his behalf. He’s loving being home with his family and runs around chasing his sister and laughing like a crazy man. The greatest giggles, smiles and silliness comes out of him. We never knew him before he was sick and had all the tubes and wires hooked to him. I’m amazed at how happy he is, and how good he looks–puffy cheeks and all. We’ve had some really fun (and memorable) times with their family this past week. Since Sarah and Zack are both immuno-suppressed, we’ve felt pretty safe getting together to “play”.
Last Wednesday, we went to their house in Lehi to have lunch with Julie, Zack and Lexi. On the way, our car was making a really weird grinding sound whenever I hit the brakes, and after talking to Steve, I decided to have Julie’s husband Shane look at the car sometime in the next week. Sarah played with the kids while Julie and I watched and talked. We had a nice lunch and then went downstairs and Julie cut Sarah’s hair.
Zack and I finally became buddies when we went to change his diaper and then slid down the stairs on our bottoms. After Sarah’s cute haircut, we went outside to blow bubbles and squirt water from the deck. We accidentally locked ourselves out, and here’s where our day got really interesting.
Their deck is more like a balcony and the only access is the door that was locked. I told Julie I’d jump down and go around to let us in. She told me it was much farther than it looks, but without hesitation, I tossed my sandals over the side and climbed over to jump. It was only about 6 feet from the ground, and I landed perfectly on the balls of my feet, ankles straight, knees bent and everything. There was a really weird “pop” we heard and I felt in the top of my foot when I made contact with the ground, though. It didn’t really hurt, just kind of went numb, but when I tried to stand up, the pain was pretty bad. So, Julie jumped over (should have just let her do it in the first place) and ran around the house and got ice and let the kids in the house. We sat there for a while trying to figure out if it was bad or not, and I just felt so stupid. Apparently, my 41 year-old body doesn’t quite work quite like it did when I was 20. Big surprise. Julie got me some crutches and we went back in the house. We decided I needed to have it looked at, so Julie took me to Instacare and Sarah stayed with the kids. The doctor said it wasn’t broken, that he could see. Could be a stress fracture, but that sometimes doesn’t show in x-rays for 5-10 days. He wrapped it and gave me a shoe to wear so I could walk, and told me if it wasn’t better in a week or so, I should have it checked again. Julie apologized over and over, and I just felt stupid over and over. We went back to her house for me to rest my foot, and since we’d missed Sarah’s cardiac rehab anyway, we decided to order pizza for dinner and wait for Shane to get home so he could look at the suburban for us.
Shane decided the front rotors were bad, but then after he drove it and listened, he checked the back., and discovered that the brakes on the back were so bad, there really weren’t any pads at all… that’s right… metal on metal. It was crazy. Guess we’ve really worn out our cars the past 6 months. Shane fixed both back brakes for me, and at 9:30 that night, we finally headed back home with a sore foot, but a safe car. I was so grateful for his abilities and willingness to give up his whole evening working on our car.
It’s kind of funny how things work out. I’ve learned and realized a few things this week as I think about that day. Just reminded me yet again that Heavenly Father loves us and answers our prayers. I’ve said this before, but I don’t believe there are any coincidences, but miracles are all around us.
- I think I hurt my foot so we would have to stay so Shane could look at the brakes and fix them for us that night. That morning was the first time we’d even heard a sound, and the brakes were so bad we could have easily had a major accident on the freeway on the way back. Julie was trying to make me feel better when she suggested this idea when we were waiting to see the doctor, but I think she was right. We all (here and at home) pray every day that we’ll be safe, and it’s incredibly amazing to me that we continue to be safe, with all this traveling we do. It’s kind of ironic, but I’ve come to believe my injury kept us safe that day.
- Whenever I come to stay with Sarah in Salt Lake, I become the “nurse” and do everything for her. Even though she’s strong and able to do everything for herself, I still wake her up, get her pills, help her with her vitals, and fix her breakfast. It’s just what I do…I’m the mom. But, this injury to my foot helped us both realize that she can (and should) be much more independent, and since we’re facing the very good possibility of going home, it’s a transition that would have been very difficult for her (and me) without that realization. She took really good care of both of us the next couple of days as I did only what I had to because I couldn’t stand or walk without crutches, and it was hard to do much of anything.
- I’ve learned that I’m not invincible. I have limits, and I really don’t think I know what they are. When I climbed over that railing and started to jump, I didn’t feel at all like I shouldn’t. I had no doubt that I could do it. And, I did, just not as successfully as I had hoped. I believe that without that jump, I wouldn’t have had the above two blessings, but it’s weird to me that even for a second I didn’t think about being careful. I guess I need to pay attention to myself a little more when we get home. Start eating right again, exercise regularly (when my foot’s better), and get enough of the right sleep each night. I know I can’t be 20 again. That’s painfully obvious, but I do have to take care of this body of mine so I can enjoy being home with my family. We love to play together, and now that Sarah can (and wants to) be active, I have a feeling our time together might include fewer movies and more outdoor time. It makes me so happy to think about that….
So, that was a very interesting, but good day for us. We went back to Julie’s Saturday morning to tend Zack for her while she took Lexi to a movie. After we played blocks and cars, we took turns holding a cuddly sleepy boy while he napped. We loved every moment of it.
We got back to the apartment just in time for three of Sarah’s friends from her singles ward in Pocatello to come visit her. They had a great time talking and laughing. I was so grateful they were willing to spend all that time and gas to come down to Salt Lake to spend time with her. Those kids are so wonderful. Can’t wait til she can get involved in her ward again.
Soon after the visit, we got an invitation from Shane’s parents to come to their house in Alpine for a barbecue. They have a beautiful home and yard at the base of the mountains. It was so gorgeous and they were very gracious hosts. We felt pretty special that they would include us as part of their family, and really enjoyed ourselves. The food was so delicious, and Sarah had a great time playing with the kids. We felt so happy doing something so “normal” again. When we got home, she got this big huge grin on her face and said, “Mom, do you realize what I did tonight? I played soccer!” She’s so excited to get home and have energy to play with her brothers.
Yesterday after cardiac clinic, Julie, Lexi and Zack came over to our house to play and have lunch. We worried that we didn’t have enough to do here to keep them busy but we had a really fun time. After some bop-it, coloring, and domino towers, my favorite thing by far was playing with the sticker mustaches Sarah’s cousin Cami got her for the masks. Zack was absolutely adamant he was not letting us stick anything on his face…can’t say that I blame him after what he’s been through these past months. But we girls had a good time, and laughed and laughed.
We will truly miss this special family when we can’t be together so often, but we promised Lexi we would come see them sometimes when we come to visit Grandma and Grandpa Brown and the rest of our family in Lehi. We love the Alexanders and are so grateful that their baby boy is doing so well. We feel so blessed to have been able to share these hard and special experiences at the hospital and formed bonds that will last forever.
The phrase, “wonder of wonders, miracle of miracles” from Fiddler on the Roof is stuck in my head. My kids all know when a tune gets stuck in my head it’s there for a long, long time. (One of Bryson’s favorite past-times is absently walking through a room whistling a tune and seeing how long it takes me to start humming it.) Today I don’t mind, though. We’ve experienced a “miracle of miracles”… and my eyes have been leaking with gratitude to God all day long….
Sarah and I decided we actually like going to Cardiac Clinic now…especially when all we get is good news!
- Sarah’s albumen level is at a record 4.2 right now!! (Normal healthy levels are 3.4 to 4.8) When Sarah was diagnosed with PLE at age 10, her levels dropped below 4.0. In the years following, she gradually dropped to the 2.5 range. The past two years, we’ve brought her in to have regular albumen infusions, and struggled to keep her above 2.5, finally accepting that her body just couldn’t stay there and being ok with anything close to 2.0, but she’s had lows clear down to 1.3 before. And now, after a heart transplant and 3 months of recovery, her body is healing, and her PLE is GONE!!!
- Sarah’s mitral and bicuspid valves in her heart have shown moderate regurgitation (leaking) in her echos since transplant. This often is a sign of rejection, but is also just common in newly transplanted hearts and is expected to calm down (usually much faster). Her echo report today said that her valve regurgitation was “trace to low”! Her angel heart is healthy and calming down, doing well, and healing her sick body.
- Her liver MRI preliminary report said that there were no changes, so her damaged liver isn’t getting any worse. I hope the final report will actually show that things have improved with her healthy heart, but I will take “no change” as a definite blessing!
Everything else looked good too, and we’re holding our breaths and hoping that her biopsy Thursday comes out beautifully clean again. We have every reason to think it will, and a clean report still means two weeks between appointments and we get to go home!! What besides a miracle could give a girl without hope for a healthy future a new, perfect, angel heart? What besides a miracle could make a degenerative disease that wreaked havoc inside her body for 10 years just go away after only 3 months with her new heart? Maybe someday when things calm down a little, I’ll make a miracle list. It will likely take a while to summarize and count all the miracles and blessings we’ve experienced through this journey, and I hope we never forget or take them for granted.
“…But of all God’s miracles large and small,
The most miraculous one of all
Is the one I thought could never be:
God has given you to me.”
(Miracle of Miracles, Fiddler on the Roof)
When we started this journey with Sarah, I started reading the story of an incredibly strong girl and her family from St. George. Abby Doman was an active, “healthy” 11-year old whose life was turned upside down one day when she collapsed in PE at school. She was eventually revived, and within hours was diagnosed with complex kind of cardiomyopathy, and was in complete heart failure. She was listed for a transplant. Her journey is very different from Sarah’s, but it also includes incredible faith, miracles and gratitude. (Here is a link to her blog if you’d like to read more. Her mom, Michelle, was a great support to me in the scary beginning stages of our transplant journey as we corresponded by email. I was so grateful for the perspective and encouragement she gave me after a late night of worrying made me question our decision…just for a minute.) Abby got her second chance when she received her heart transplant on July 12th, 2011.
Abby and her family don’t know who Abby’s donor was, so they celebrate this incredibly unselfish gift and their gratitude by having “Pay it forward for Abby” Day. I actually finished reading Michelle’s book, Abby’s Miracle, just a few days ago and read about their first one. With tears streaming down my face, I read some of the incredible things people did in Abby’s honor and couldn’t think of a more appropriate way to say “thank you” to an anonymous donor family for such an incredible gift. (I’m considering asking Michelle if we can “steal” this idea and celebrate Sarah’s second chance the same way. I just think it’s so amazing.) So, this week Sarah and I decided we needed to say thank you for Abby too. We wanted to do something right where we were and help people in need, so we decided to put out some of Abby’s favorite snacks (which are actually some of Sarah’s favorites, too) at the Ronald McDonald House where we’re staying. Sarah made a cute sign and we put it all out on the counter for people to enjoy throughout the afternoon on Abby’s special day. We stuck around just long enough to take some pictures and hear a few people say “thank you”, “how sweet” and “I love popcorn!” It made us smile and we were so happy to be part of “Pay it forward for Abby” Day…something that shows deep gratitude by affecting other people with kindness. I love it.
Monday morning’s cardiac clinic went amazingly well. Labs, echo, and a visit with the nurse and doctor ended with an enthusiastic and cheerful “see ya next week!” But I’m most amazed at the conversation that happened in that cold cardiac clinic room #2. Sarah’s electrolytes all looked good, calcium, potassium, renal function…all good. Her albumen level is now at 3.8, all on her own! That’s an all-time high (for as long as I can remember) since she developed protein losing enteropathy (PLE). It’s 0.5 higher than last week, and only 0.2 less than the low end of normal. It’s absolutely miraculous to us, and we are simply amazed that her body is responding so well to her new heart. It gives me just one more reason to love our heart donor and his/her family, for giving her a chance to have a life WITHOUT constant swelling, diarrhea and vomiting. We hoped so very hard that a new heart would heal her intestines and get rid of the PLE, but it wasn’t a guarantee. It’s still not quite time to say an ardent “goodbye” yet, but we are so very grateful that it looks like that awful disease is definitely packing its bags!! We haveSarah has a liver MRI this Thursday, another clinic visit next Monday, and a biopsy the next Thursday. Dr. Everitt said that after her biopsy, if everything comes back looking perfect she doesn’t see any reason why we can’t move appointments to every other week! Then she added, “Since you’re used to driving back and forth to Salt Lake so much anyway, I don’t see why we couldn’t send you all the way home between. How would you feel about that?” We were beyond words. I hope she read the smiles on our faces correctly. It should have been an excited, resounding YES! But neither of us could quite get the word out….for a while. I find myself absolutely amazed at the very real possibility of being home together as a family again only three months after Sarah’s transplant. That’s three months sooner than we expected, on the short end! …it’s just so…amazing!
I find myself feeling many emotions as I think about the wonder of it all. I’m very excited and nervous at the same time. We were so excited when we thought we’d be together again by Christmas, and then Halloween sounded wonderful. Can’t believe we might actually get some summer time at home together! I’m a little nervous to take her home, but know that cardiology is only a phone call and 2 1/2 hours away, so things will be ok. I’m a little concerned about how it’s going to work for us all to be together again too, and how Sarah will do without 100% parent attention, but I’m sure with help from others, much gentleness and patience, and perhaps a little counseling, we’ll all get used to being together and eventually find a new “normal” and rhythm. I hesitate to even say this, but I’m also struggling a little with feeling like I’m waiting for the other shoe to drop. This journey has just been so complicated and “roller coaster-esque” so many times, I find myself having a hard time truly believing things will continue on this path. However, I also believe very much in the power of positive thinking, and that having unwavering faith and gratitude brings more blessings. So I’m trying to ignore my natural tendencies to doubt, and stay focused on being faithful, grateful and amazed.
The strongest feeling I have right now is immense gratitude. Gratitude to Sarah’s donor and donor family for the incredible gift of life they have blessed her with. Oh, how I love them for giving her something that only they could give…a perfect heart that was a perfect match, and a second chance at life. Gratitude to our Heavenly Father for knowing best what we needed, even when we got frustrated and impatient. For giving Sarah exactly what she needed and when she needed it most, and the courage and strength to endure what she’s had to go through for her second chance. Gratitude to our amazing team of talented surgeons, doctors, nurses, techs, and therapists that have played such a vital part in this journey. Gratitude to our family and friends that have fasted, prayed, and worried with us throughout her whole life, and so much more intensely these past six months. Just so much gratitude…. Keep up the prayers of faith, hope and gratitude to carry us through the next 9 days!!
This year, the 4th of July at our house was a really happy day! It’s always a little more special around our house because July 4th is also Rachel’s birthday. She got an amazing surprise when Sarah and Steve came home… yes, HOME for the 4th of July and birthday celebration! We were beyond excited to see them and all be together at home again. With only a little reluctance, Dr. Everitt gave her a 24-hour pass to come home and watch fireworks with the family. She is doing so well, we’re hoping that will be a permanent arrangement before too long! 🙂 Rachel opened her presents (a “cute little baby guitar” – ukulele and case that Steve and Sarah picked out from our family, and a pick holder from Sarah for Rachel’s guitar. There was, of course, also an itunes card and the obligatory Symphony milk chocolate bar.) It was so fun hearing beautiful music from my living room, featuring sweet girls’ voices and a ukulele or guitar. I’ve really missed that “jammin'” they used to do together. Made my heart smile. After that and the kids’ water fight, we all piled into our car and went to buy fireworks for our annual show. It kind of makes me laugh. This is a tradition I still can’t quite wrap my head around. I love that Steve loves them though, and through his and my children’s excitement, I find just enough happiness in watching them together that I don’t worry about the cost or dangers so much anymore. (It also helps that they’re all a little bigger and possibly a little more responsible with all that fire and gunpowder. Except maybe Josh, he builds his own, so he’s still a little scary.) We had Rachel’s favorite dinner of steak and potatoes, and then settled in for Steve’s show in the backyard. While we waited patiently for the wind to die down so the city could start their show, we had hot fudge pudding cake and homemade vanilla ice cream Grandma Dixon brought. Our new house has a perfect view of the city fireworks at the fairgrounds, so we settled into our camp chairs and watched a specatacular show with patriotic music in the background. We had such a wonderful time together! With this really happy day came many feelings of gratitude. Gratitude for Rachel, that she’s a part of our family and brings us so much happiness; gratitude for Sarah and her faith, endurance, and the many mighty miracles that surround her existence; gratitude for this amazing country and those who gave all for the freedoms we have the privilege of enjoying; and gratitude for hope… hope in the future of our country, hope for Sarah’s future, and hope for another happy reunion at home for our family, though (hopefully) much more permanent.
My family participates in a monthly newsletter and we take turns writing an “article” to share. This month, Sarah’s Grandpa Dixon, wrote some tender words I wanted to share with you. They reflect so much of what we all have felt at times through this experience. He rarely talks about Sarah these days without tears of awe and gratitude welling up in his eyes. Love you, Dad. ~Julia
Faith in the Lord and Gratitude for His Blessings
By H. Allen Dixon
As I reflect on the events of the past several months regarding Sarah’s journey to a new and healthy life I feel profound gratitude to our Father In Heaven and our Savior, Jesus Christ, for their many blessings for her and her own family and our extended family. This has been a time for us all to test our faith in Heavenly Father and Jesus and know and trust that They truly love Sarah and our entire family. We all prayed many times for the outcome we wanted for Sarah, but always trusted in Their plan for her. Many times it was very difficult to say “… Thy will be done” because we know what we all want Sarah’s life to be like. It is really hard to watch as the trials and difficult times come for her and each of us. I, as her Grandfather would like to have her well and would be willing to trade my good health for her situation if I could in some way make her better and healthy by doing so. We mortals know very little about the details of the plan of our Heavenly Father and Savior for each of us. That is why we must exercise and develop strong faith in the Savior and trust in the Father. Even when we show faith in Them and pray for what we want to happen for us, it is difficult to accept the circumstances that come to our lives that may not be what we want for ourselves and our loved ones. We want it to be our way, not knowing that our Heavenly Father always knows what is best for us.
I have watched Sarah as she has gone on this difficult path to new health and am truly grateful and amazed at her strength and strong faith and testimony. She is truly an example to all of us. I am thankful to the Lord for the many miraculous blessings He has bestowed on Sarah and Steve and Julie and their family. It is such a joy to receive daily updates on her health status from Steve and Julie. I appreciate that so much. She has experienced so much progress in the past few weeks. She now walks to her appointments. She has no “tubes” except for oxygen at night. I have never understood what all the numbers mean but they seem to be getting better all the time. We always pray for Sarah (we have her whole life) and have faith and hope that she will continue to improve until she can come home permanently and live the life she dreams of. What an abundance of miracles have come to her. It is still kind of hard to realize that she has a healthy “angel” heart beating inside of her body and that it is making her well and healthy.
As Sarah continues to improve and we ask for fewer and fewer blessings for her it is my prayer that we will never stop giving thanks to our Heavenly Father and our Savior for their many, many blessings They have given to her and all of us. I express my deep and sincere love to all of you, my precious family. You are the most important ones in my life. I love the gospel and the Lord and pray for His blessings to be with each of you.
What a wonderful morning! Sarah breezed right through her cardiac clinic today and we are pleased to report her albumin (protein) levels are 3.3. That is up from 2.9 from last Monday. It is rising on its own, which means her PLE seems to be settling down. When those PLE symptoms where first noticed when she was 10, we really thought she would not live because of the problems that come with it. But here we are! She is feeling really good. She walked out of the hospital last Thursday with no daytime oxygen to see how she would do. She still has it on when she feels tired and at night but this morning at clinic she was at 97%. My eyes leaked and she hugged me! Some times it’s hard to believe we’re even here! When I think about it my heart overflows. Thank you for everything and thank God for a second chance!