We’ve been home for four weeks now. In that time, Sarah has: made two trips to Salt Lake for check-ups at clinic, had one dose of IVIG, worked out in 10 sessions of cardiac rehab, taken 53 sets of home vitals, checked her blood sugar at least 112 times, endured 31 shots of insulin, and swallowed at least 726 pills. Whew! I must say that adding everything up like that makes it sound a whole lot worse than it has been. She has been amazing. She sets her clock for 8:00 every morning to take vitals, check her blood, and swallow 11 pills. Then she eats breakfast. (This is huge…. Prior to her hospitalization and transplant, she never felt like eating anything til about noon or after, and getting up by 8:00 only happened when it was absolutely necessary, and was usually followed by a mid-morning nap.) Around 1:00, she checks her blood again and eats lunch. At 2:00, she takes another 3 or 4 pills (depending on the day), and at 6:00, she takes another one. She checks her blood and eats dinner (whenever I happen to get it together). At 8:00, she takes her last 9 pills of the day. At 10:00, she checks her blood one last time, takes another set of vitals, gets a shot of insulin, has a bedtime snack (whether she wants it or not because her sugar is usually low and she needs the calories anyway), and heads to bed an hour or so later. All the hours in between have been spent playing with her brothers, watching movies or playing music/singing with her sister, eating snacks, going out for treats with her friends, attending church activities, shopping, cleaning out and redecorating her room, and spending time with our family. It’s been so amazing to be home together. Right after Sarah got home, she ordered Just Dance 2, 3, and 4 for the wii. She was so excited and energetic when they got here that she played them and danced for two hours! She went through each of her siblings (some of them twice) and completely wore them all out. Steve and I were shocked and, once again…amazed. With the exception of some high blood pressures that caused headaches, she’s felt so good, been so happy, and had so much energy to be up and moving all day long! She has had to be creative with the timing of “going out” so public places aren’t as crowded, be careful to wear her mask everywhere, not touch things in public places, sanitize every time she does touch anything or leave a public place, stay out of the sun, take her meds and poker and other medical paraphernalia with her, and stay away from people that are sick. But for some reason, now that she has a second chance to live her life, none of that bothers her a bit. I think she simply feels good, and loves living!

People keep asking me if it’s good to be home together, and if things are getting back to “normal” yet. I’m not sure what to say…. YES! We love being home together, but are things normal? The problem is that I really don’t want them to be normal, ever again. When Sarah and our family were separated, we were relying very heavily on the beautiful grace of our Savior to bring us peace, fill up the holes, and make up for everything we lacked. We were constantly praying for guidance, faith and strength sufficient to endure this trial triumphantly. We completely relied on our Heavenly Father to show us the way and bless us with all that we needed. And that’s exactly what happened. We were so filled with the Holy Ghost that although we were lonely for one another, we were never alone. Although we were frustrated and worried at times, we always knew things would work out exactly how they needed to. And although we never want to go through that again, we know that if called upon to do so, we could…and we would, with help from Above. I’m so very grateful for all those miracles and blessings. The problem is that I want to feel that way still, every day of my life. But when things get back to “normal”, there’s a certain part of life that moves in and takes over all those spiritual feelings until you really don’t feel them anymore, unless you’re immersed in the scriptures, or on your knees. When life gets back to normal, there’s just not time or focus that allows your spirit to be carried that way. And I miss it. I really do. The boys head back to school (and I back to work) tomorrow. And then we hit a whole new level of “normal”. And I’m really not ready…. I do like the idea of a routine, less TV and computer games, more reading, and a cleaner house. But I’m worried that being separated for a time every day in the normal-ness and busy-ness of life, we could lose that sweet feeling of the Spirit in our lives. Family home evening, family prayers twice a day, church together on Sunday…that’s already part of our routine. I imagine this is the way many of our missionaries feel when they return home after serving the Lord for two years. Nobody wants to go back to “normal” when they’ve experienced life for a time so spiritually superior to that. I been taught all my life that the key to feeling the Spirit through the routine of normal life is to work harder to do the things that bring us closer to Christ…scripture study, prayer, temple work, service, etc… but in addition to diligently doing those things, I think we’ll also have to try extra hard to look for the daily miracles and blessings I’m certain He continues to send. So, here’s to growth and my whole-hearted attempt at a new normal, one at a higher spiritual level, one that includes relying on the Lord daily for all that we need. Wish me luck. If we’re successful, I’m certain it’s one that will help me and Steve guide our family through this life and endure it triumphantly…all the way through to forever.

~Julia

 

Well, it’s been three weeks since we had our celebration welcoming Sarah back home after her transplant. As I suspected it would, life happened, and although we’ve been so happy being home together, many things that we used to make time for (like blogging) have fallen by the wayside as all the other things we ignored the past few months started screaming for attention. But I needed to post a few pictures and report about the wonderful little open house we had for Sarah to celebrate her homecoming. We had a great group of our neighbors, mine and Steve’s friends, and Sarah’s friends stop in to see our beautiful, healthy, pink girl. It was so nice to visit and report to them personally how things were going and how happy we were. It was also good to be able to personally thank them for all their fervent prayers for her and our family these past months. The hugs were great, and all the smiling faces were so good to see.

My parents played a pretty big role in her homecoming as well. Mom had helped the boys make signs (oh…you have to know that all of the hearts on the signs are anatomically correct, thanks to my drawing-loving boys), and they spent hours blowing up balloons, tying bows, and decorating not only the house, but he whole street…all the way to our house! It was so sweet for them to do such a special thing for her (since I wasn’t here to do it), and all the neighbors were tickled to be part of it too.

It was still going to be another week before we were all home together because Rachel was in Japan with the Sister City Youth Delegation for another few days, and Bryson was leaving the next morning for Scout Camp. After 4 months, what’s another week, right? But we were thrilled to be with a mom, a dad, and a sister Sarah all at the same house, at the same time.

Besides being home, my other favorite part of the whole weekend was watching my now healthy and happy girl reunite with so many of her sweet friends. It was touching to see how many of her friends from her singles ward came (including her bishopric and their wives), and friends from high school, too. It was just wonderful to sit back and watch her. Actually, it was amazing. Just over a year ago, I never imagined we’d ever be having a celebration like this….

~Julia

I’m sure you’ve all been anxious to know how our first weeks at home together were. I’ll be sure to catch you up soon. Just know that we have thoroughly enjoyed our time together, never stopped smiling (even when tears flowed freely down our faces), and pretty much accomplished absolutely nothing….

Sarah, Rachel and I headed back down to Utah Wednesday afternoon to be there for an early Thursday morning lab draw, echo and transplant clinic, and then a 12-hour IVIG infusion in the RTU. Clinic went amazingly well…again. Sarah’s echo and labs all looked good, and her albumen level is at an all-time high of 4.4!! What…? On her own…? YES!! Her body (and new heart) must be so very happy with protein levels that high. I just can’t believe how things have clicked and how healthy she is, compared to her last ten years. It’s simply amazing. Her insulin has been reduced and we came down a little on one of her anti-rejection mes, too. All good things.

After clinic, we checked into the RTU (rapid treatment unit) for her IVIG treatment. The IVIG tricks her body into thinking it has plenty of antibodies and doesn’t need to create more, even though the harsh drugs she’s on has killed much of her own immune system. It also helps strengthen “neutral” antibodies she already has, and helps calm inflammation caused by the drugs. She’s had several of these before, and besides having to have an IV and be at the hospital, it’s not too bad. They pre-medicate with Benadryl, Tylenol and a hefty dose of Prednesone (steroid) to avoid possible side affects. So when they got things hooked up, we just napped, hung out, watched TV,  ate, and played cards. Our nurse this time was super sweet and checked on us a lot. She also questioned the 12-hour infusion since their usual protocol would have that amount done in 4 hours. Dr. Everitt compromised and OK’d an 8-hour spread. We were so happy with the possibility of being done and gone by 8:00 instead of  midnight. She tolerated the faster flow just fine, and everything went really well.

She had some pretty high blood sugars later that night (because of the 60mg dose of steroids) that caused a little panic in our hearts. I’m guessing the french fries and cupcake she ate for dinner at the hospital didn’t help much either. Oops! 🙂 Steve and Sarah were present for the diabetes teaching at the hospital, but we don’t really know other than checking and treating at certain intervals what we’re supposed to do with it. We don’t have a doctor that’s constantly keeping track of her. We have a really nice endocrinology nurse practitioner that we saw after discharge, but only go see her every 3 months. So when Sarah told me it was too soon to give another correction, we didn’t really know what to do when her blood sugar was actually higher after 3 hours and 4 units of insulin. We had to call transplant team, and then the endocrinologist on call at the diabetes center before we were comfortable with what to do and how to gauge what was going on. Happy to report that everything was fine and I slept soundly after another blood check at 2:00 a.m. that looked much more normal. We’ll have to have a few more instructions and plans in place to combat her body’s reaction next time. We’re hoping she’ll be down to almost no insulin by then, though.

So, we had a great visit with Grandma and Grandpa Brown, a successful clinic and IVIG treatment, a fun “girls day” on the way home, and found out all was well with Sarah for another two weeks. I’m so grateful our family is back together and that she is doing so well at home. I know I keep saying this but I just really can’t believe how incredibly blessed we are…. God is so very good.

~Julia