We had another great day yesterday in Cardiac Clinic and left with a fabulous report to share!

• Sarah’s albumen is down a little, to 2.9, but still ok.
• Her blood sugars have held steady and look good. (We haven’t done any correction doses of insulin in the last two days.)
• They are pleased with her energy and exertion levels. (We wandered all over the hospital all morning yesterday, and she still had enough in her to give her all at cardiac rehab in the late afternoon. The wheelchair mostly lives in the car now.)
• Her blood pressures look good and level again.
• Prograf and Cellcept levels are perfect. (These, along with the steroids, are her anti-rejection meds.) No med changes this week.
• Her Creatinitne and BUN (kidney function levels) both look GREAT and normal levels for a healthy person.
• Her echo looked good. The past few showed some thickening of her left ventricle. (Not uncommon for transplanted hearts.) Hers is starting to thin back down, and everything else looked good, too.

We also met with the dietician and talked a little more about power packing, reaching her calorie goals, and what ideas we could put in place to help get her to gain weight. Our goal has been 1600-1800 calories/day, and we usually can get her to about 1400 every day. We discovered the past two days that getting a whole 500 or 600 calories in first thing in the morning has made all the difference. (We also started using cream instead of milk, and realized how many calories we could get in with a Whopper Jr. with cheese and bacon. :)) We are so proud to report that Sunday was an 1800 calorie day, and yesterday was over 2000! YAY Sarah! It’s hard to eat when you’re nauseous, or don’t feel hungry, or nothing sounds good, but she’s such a trooper to do what she needs to, and lets me talk her into stuffing another serving of ice cream and cookies or trail mix down her throat.

Things are just going so great. So happy and so proud of her for pushing like she needs to, and doing the things that will help her angel heart and body be healthy and strong! Keep it up, little darlin’! I LOVE this girl so much, and I’m so grateful for her donor’s family and the amazing team we have behind her helping her to live a full and happy, healthy life.

~Julia

The Ronald McDonald House has become our home away from home. We feel comfortable and welcome here, and are even starting to recognize faces, have visits in the hall with other guests, and make friends and share our amazing kids’ stories (despite our current social outcast state). We are so very blessed to have the opportunity to stay here. We are occupying one of only four suites for immuno-suppressed long-term patients. This is truly an amazing place, with all the volunteers, community services, free food, and use of basically anything we might need while we stay here. Because we can’t take Sarah down to the large gathering rooms, the dining room, and the playroom/teen room, we are kind of isolated from what this whole experience could be, but we still feel so welcome and loved. We are so close to the hospital, it’s really pretty quiet up here on the 3rd floor, and just right for our transition to home. I thought I’d show you what it looks like so you can picture where our girl is, and that she’s comfortable and happy.

So, as you can see, we have a nice little space that’s just for us. Steve and I continue to trade places and stay with her in our little “apartment”. She would love visitors, but only if you can abide by the rules. Yes, I know, more rules. Actually, they’re about the same as before, but this time some of them are imposed by The House to protect the guests.

1. You must be healthy. (This means absolutely no illness for at least 2 days, and not been around anyone who is.)
2. You must wear a mask and sanitize or wash constantly while you’re with Sarah.
3. You have to check-in and -out at the main desk. Please always check with us first before visiting. We still have lots of appointments (almost daily), and it’s a lot easier for us, the staff, and you, if we know you’re coming, and when.
4. Only two or three visitors are allowed at a time. (We could have a few more if we could be in the larger gathering areas where visitors are allowed to be, but because of Sarah’s “bubble”, she has to stay mostly in her suite.) Only 5 people are allowed in her suite at a time. If it’s a nice day and you’d like to bring your whole (healthy) family, we’d love to meet you at Reservoir Park or outside the house to spend a little time together.

If you want to visit or send mail, the address is 935 E. South Temple, Suite 307, Salt Lake City, UT 84102

Here’s a link, in case you’re interested in learning more about The Ronald McDonald House Charities of the Intermountain Area. It’s a pretty amazing charity, and has helped so many people through their struggles while their sweet children are in the hospital. We feel very lucky to be just one family blessed by so much love and generosity.

 

Just got Sarah’s biopsy results back… “squeaky clean”! Sarah’s angel heart is still healthy. I’m so happy and grateful right now, I just can’t keep the tears in….

I find myself worrying probably too much about these biopsies. I always know in my heart that everything will be ok, and that Heavenly Father’s plan is perfect, whatever it is. But there’s always a part of me that dreads hearing bad news, or frustrating setbacks or even just little bumps along the way. I’m really very done with those. This “better every day” routine suits me so much better. 🙂

Dr. Everitt explained rejection to me a little better a few weeks ago. She said that rejection can happen anytime, but the most crucial time is in first three months post-transplant. Then, if it ever happens later, those next three months are just as crucial. Rejection certainly is a scary word. But it’s not quite as scary as I used to think. She has labs and biopsies so often to catch possible rejection before it ever causes her new heart to get too sick. It can usually be treated with medication changes and/or infusion therapy, depending on the cause. Today I learned that these DSAs (donor specific antibodies) that were higher this week almost always show up in antibody-based rejection, but high DSAs don’t necessarily mean there is rejection. They don’t really know why it works that way, but I’m certainly grateful in Sarah’s case that it does. I was definitely relieved, but so very grateful for this good news today! Like Michelle (the transplant nurse practitioner) said, “Sarah certainly likes to keep us on our toes… We like these kinds of surprises”.

We’re still hanging out in her room in the RTU. Sarah will be receiving her IVIg and more albumen until about 5:30 a.m. Dr. Tani wants to examine her again before she gets released in the morning. We might have to stay for another dose of IV diuretics, but if not, we should get out of here by 8:30 or so. Guessing we’ll go straight “home” and take a celebratory morning nap.

Sarah’s heart cath that was originally scheduled for Friday has been moved to tomorrow, first case. They moved it so they can follow it with over 18 hours of infusion therapy in the RTU (Rapid Treatment Unit) and still have her regular doctors available afterwards. They’ll do an albumen infusion, a huge IVIg treatment, and another albumen, followed by diuretics. Her DSA’s (donor specific antibodies) are higher this week and need to be countered with a large dose of IVIg. It might indicate some rejection, but we won’t know for sure until the biopsy results come in later in the afternoon. Checking in at 6am, and headed to the RTU right after recovery from the cath. That’s a part of the hospital we haven’t had the pleasure to see yet. It’s gonna be a long “23 hours or less”. Hoping things go well, and praying her angel heart’s still healthy and strong. Thank you for your prayers!!

~Julia

Hard to believe it’s been 8 weeks since Sarah received her new heart. She had another cardiac clinic Monday and I promised Steve I’d give his report. I wasn’t there, so I don’t have any cute stories, pictures, or interesting anecdotes to share, but in a nutshell, here are the highlights…

• Her albumen is at 2.2, which is a little below the target range, but stayed steady from last Thursday’s check. When she has her heart cath on Friday, they’re planning to do a dose of albumen before, and a second after the IVIg infusion immdiately following her cath. They’ll also give diuretics to help her get rid of all that extra fluid. We’re hoping she can hold on to the protein a little longer and the higher levels will help her feel even better and keep the PLE symptoms at bay.
• During the appointment, she had her oxygen off for about 30 to 45 minutes, and her oxygen levels stayed steady around 90! Not quite ready to ditch the oxygen yet, but they did give the ok for her to take it off for a few minutes during the day.
• Her blood pressure has slowly started to climb higher this past week. This is not uncommon with the use of prograf (one of the anti-rejection medicines) and steroids. They added a new blood pressure medicine to keep that under control.
• Her echo looked good, no changes there.
• Everything else is holding steady.

So over all, good news. We met with the diabetes educator today, which was really helpful. We started out talking about what diabetes is, what’s going on in her body, and the basics of plate management. We ended up talking about not limiting any of her foods and how to best bulk up her diet with extra protein to simply balance the carbs and also meet her calorie goals. It was really not what she had in mind to teach. But, after talking to us a bit, she learned more about Sarah’s doctor’s methods and goals, and was so pleased with how Sarah’s numbers looked, she felt very comfortable with the amount of insulin balancing her food as it is right now. Sarah has only been needing one correction dose of insulin during the days, if any at all. Hoping so much that’s a sign that her body is only dependent on the insulin because of the steroids.

So here we are…8 weeks post-transplant, and look how far she’s come. I still can’t believe it. Things are still looking good.

It is so great to be out of the hospital. The apartment is quiet and it’s good to be in control of her day. Well, unless she has clinic days, which are busy or appointments with behavioral health or cardiac rehab or… or… or…
Sarah had clinic yesterday and things are progressing well. Her chest x-ray looked clean and her echo was unchanged. She is still having valve leakage but it is not getting worse. We’re hoping that will just get better over time. Her blood labs showed good electrolytes but her albumin is still dropping. It is down to 2.1, which is an indicator that her PLE is still active. We are hoping the PLE will go away in the next four or five months. She has her hearth cath scheduled for next Friday to take a biopsy. They will do albumin and IVIg infusions then as well. If her biopsy comes back looking great, then they may wait a whole month before the next one.
The docs took her off her oxygen during her appointment to see how her O2 levels would hold up. It dropped a bit so she will be attached to her air a little longer. However, they did give her the latitude to take it off during the day for a few minutes so she an take a break from it once in a while. They also took out the last five sutures. Four from her sternum and one from her drain tube sight. So now she has no tubes, stitches or stickers, just buckets of pills and oxygen. She really is so pleased with her progress and I still look at her in awe!
We did get a chance to visit with Zack and his mom and dad. He is doing well. After a rough first day with his new heart, yesterday was more relaxing and productive in his recovery. Sarah sat in a tall chair next to him, stroking his hair and talking to him. He just settled down and relaxed. His mom, Julie and dad, Shane, were on KSL last night taking about the importance of organ donation. They are strong people and did really well. The story had that emotional tug that would make someone think twice if they weren’t already a donor. You should watch it, especially if you haven’t made that life saving decision yet: http://bit.ly/13FUd46

Yesterday we celebrated Sarah’s 20th birthday. Who knew we would ever get here. There is no way to have a party big enough, especially when she can’t be around other people with her compromised immune system. The whole family sat out on the lawn outside the Ronald McDonald House and Sarah sat in the shade happily opening presents. It has been months and months since we were all in the same car together. But the highlight of the day was finding out that her friend Zack’s new angel heart arrived. What a miracle. Her birthday wasn’t the biggest production ever but certainly was one of the most meaningful!

Sarah started her cardiac rehab today. They started her out slow and steady but she reached the goals they set for her and blew right on by them. She’s an amazing girl. She said that she knew she was tired but her legs still had energy in them and she couldn’t get them to stop! Being out of the hospital has been good for her. She is having a problem getting enough calories and hasn’t gained any weight. Could be a problem with the feeding tube issue if we can’t get those numbers up. She is becoming more self assured and independent every day that goes by. She was even okay being on her own for about an hour while I went back up to the hospital to give Zack a blessing. It’s hard to believe we’re coming up on week 8. Wow.

Today was a crazy exhausting day of labs, clinics and appointments. On the calendar, it didn’t look too bad, but by the time we hit the end of our last appointment at 4:20, Sarah was so tired, she didn’t even feel like going to play with the House Band, let alone exercising at cardiac rehab. We began the day bright and early again with labs at 7:30 in the morning. After that, Sarah had an appointment for an echo, and cardiac clinic with the transplant team. Echo looked good. Labs looked good. Albumen is slowly creeping down, which indicates that we’re still dealing with some PLE, but that’s ok, because it kind of explains the diarrhea and nausea. We’re still expecting that to get better over time. She’s had that intestinal disease for 10 years, so it makes sense it wouldn’t get better overnight. Still hoping for soon, though. Her anti-rejection drug levels are good, so they’re backing off on the steroids already. (Yay!) Because her blood sugars are beginning to even out at lower numbers lately, they had to put her on diuretics again to keep her fluid balance level. (Apparently high sugars act as a diuretic… sure didn’t know that!) So with a few adjustments to her meds, 3 hours later we were sent on our way. We took a quick trip up to the 3rd floor because we had to go visit Zack like we had promised. Sarah missed her “boyfriend”, and we had to give Julie a hug too. About an hour and a half after coming home for lunch and a rest, we went to see the nurse practitioner at the Utah Diabetes Center for clinic. She did a history, exam, downloaded all the numbers from Sarah’s glucometer, and said it looked like things were going well. We have an appointment next week for diabetes teaching to help us learn more about carbohydrates and using the insulin to balance out her meals, rather than just giving corrective doses according to her levels. She was so tired by the time we got done that we took her back to the apartment and cancelled her cardiac rehab for today. I’m still not sure if that was the right call, but she was so tired and overwhelmed with the thought of having to work out even a little, I don’t think it would have been worth the stress. Besides, she walked in and out of almost every appointment today, so I’m pretty sure that has to count for something. She went to bed tonight very tired, and grateful to get to spend another night without any monitor beeps.

~Julia

Today marks 7 weeks since Sarah was in surgery receiving her new heart. At times it seems like it’s been forever, and today, I can’t believe it’s only been 7 weeks. She’s doing remarkably well. Our biggest problem today was that all the laughter kept making her sternum hurt. Gives a new meaning to the phrase, “laugh until you cry”. We felt so bad every time we made her laugh, but being girls and being together, we just couldn’t help it. Hope that gets better soon. I love seeing her laugh, especially with her sister. She also had a couple of “firsts” today… She got to have her first outside walk, not at the hospital. We ventured a couple blocks east of the house and found out that the sidewalks here are a little shady… the trees were doing their job well, but there were so many bumps, cracks, cliffs and jumps that Sarah had quite a ride in her wheelchair. By her squealing and nervousness, you’d think we were on a ride at Lagoon. (She has to be careful to avoid the sun because some of her meds cause easy burning, and because she’s immuno-suppressed she is more susceptible to skin cancer.) We had fun outside together, but eventually the heat and wheelies got the best of us and we came back home. Sarah also got to take a real shower for the first time… well, since January 17th, when she got her first PICC line. She was always worried about getting it wet, so she took baths until surgery and then with all the dressings and tubes and wires, she was reduced to sponge baths. She would have been in there forever if the hot water would have lasted that long. It seemed to be just another simple pleasure we all take for granted. We had another good day together today. Rachel shared some of the spiritual thoughts and experiences from EFY, we played a couple of games and watched a musical (you know, girl stuff). Except for all the fluid and calorie measuring, the glucose checks and insulin pokes, and the medicine distribution, it actually felt like I was on a little weekend vacation with my girls. I was thinking today about Memorial Day weekend and the scary state Sarah was in with all her drug reactions and psychosis issues. If someone had tried to tell me then that things would be like this in just two weeks, I never would have believed them. It’s simply miraculous.

~Julia

We started the day bright and early, heading back to Primary Children’s for a blood draw at 7:30. They checked her prograf levels (one of her anti-rejection meds), and everything was perfect. We got back just in time to make the beds just before Grandma & Grandpa Brown brought Rachel to us. She has been in Provo at EFY (Especially for Youth…a week-long LDS youth camp), and gets to spend the rest of the weekend with us. It was really very fun to have them visit, and has been so great to have Rachel with us here all day. She tended Sarah while I went to the store. Later in the afternoon we went for a walk down to the gathering room on the main level where there’s a piano and listened to Rachel play a new song she wrote. …And then a few more… Sarah laid her head on my shoulder and said, “Oh, how I have missed this.” With tears in our eyes, it hit us that before too long, she’ll get to come all the way home and listen to her sister play anytime. It’s amazing what things you miss that mean so much to you when you don’t have them anymore. Makes me even more grateful for “little things” that make our family and home so special. After Rachel’s mini-concert, we had a pizza/movie night and enjoyed just “hanging out” together. I sure loved watching my girls together again, talking and laughing and loving each other. Even though we’re still a family apart, sometimes we have moments where we realize (yet again) that life is good.

~Julia