I want you all to know how much we appreciate all the prayers, visits, activities and gifts for Sarah while she’s been living at the hospital the last two weeks. It makes her so happy that her room feels like “home”, and that everyone loves and cares so much about her. She is feeling better than she has for months, and it is so good to see her skinny, happy and energetic again.

I also wanted to let you know about a couple of things that happened this last week. The doctors went before the transplant board again to review her case and her status has been moved back to 1B. The criteria to be at 1A is pretty stringent, and unless she’s expected to die within weeks without intervention, she does not qualify for the 1A status. There are internal monitors, milrinone at a higher dose, and a few other things that would qualify her, but we’re no where near needing those things yet (thankfully). Her doctors were going to try to appeal, but for now, there is just nothing they can do about it. Most of the criteria is based on straightforward heart failure, and doesn’t account for peripheral damage caused by the heart. As far as her actual heart function goes, it’s still beating strong and doing as well as it can hooked up like it is. So, with a status 1B, she technically doesn’t have to live at the hospital anymore. However, we felt that the benefits of having her at the hospital with all the pre-transplant support she’s getting, plus being able to closely manage and adjust meds and nutrition on a daily basis really outweighed the inconvenience and hardship of being apart. When she’s home, she’s sick, alone a lot, and struggles emotionally and physically. When she’s at the hospital, we miss her, but now that she feels well and is so happy, we don’t really worry anymore. She really has everything she needs and then some. It was weird making a decision like that. But, it was unanimous. We all want her to feel well and get all the help she can to be prepared for her perfect heart, and we’ll just have to work out the details of being apart.

Another disappointing development this week was an antibody found in her blood. They’re not sure if it showed up when she had her head cold last month, or if it’s always been there but not shown up because her PLE was so out of control. (Antibodies are proteins, and when the PLE is so bad, she sloughs proteins.) This antibody is one that may go away, and she’ll be tested again next Thursday (results back the following Monday). Certain antibodies are not a problem when matching a new organ, some are simply a judgment call, and others cause organ rejection without a match. This particular antibody has to be matched and it’s in the “64% range”, which means is that out of 100 hearts, about 64 of them will not qualify as a match for her.  That news is kind of disheartening if you choose to think about it for very long. So please don’t. We’ve learned that things change pretty quickly around here, and if you continue to focus on the hard things, you miss the miracles.

As you pray for Sarah this week, would you please keep in mind our desire that this antibody issue will be resolved? Her chances of getting a heart soon may depend on a wider range of possibilities. We do know that Heavenly Father is in charge of this, and just as He can’t grant the blessing of a south wind to one sailor and a north wind to another at the same time on the same sea, we must pray for his will to be done, and trust that he’ll grant the blessings we pray for when the time and circumstances are right for all the people involved in this heart transplant journey. Thanks again for your love, prayers, and every little thing you’ve done. We really can’t do this without you!

~ Julia

For all of you who are wondering what I do to stay busy all day without going insane… here’s just a small peek at some of the recent benefits of being stuck at the hospital.

The rest of my time has been spent learning how to play the guitar, making paper Disney princesses with Mom on my Cricut, Sims shopping on Trey’s DS, and finding a million ways to be happy.

Hey everyone! Just wanted to give a quick report. I am not swollen anymore….like at all!!!!!! 😀 My belly is flat and I feel so great! I am keeping super busy. I have Rainbow Kids, Music Therapy, Child Life, Physical Therapy, Occupational Therapy, Behavioral Health, Spiritual Time with Jeff (the chaplain in the Rainbow kids), walks, and me time, all at different times during the week. Oh, plus family and friends visiting, calling, texting, and Skyping! 😀

I just want to thank you all for everything you have done and still do for me (and my family). Prayers, Skypes, letters/notes, texts, emails, calls, visits, food, hugs, and soo much more! Keep doing it…please. I appreciate everyone soo much! Love you all! 😀

We had a clinic visit last Thursday (one week post-discharge). We were super excited that she had made it feeling “ok” for that long. Although Sarah’s albumen levels were pretty low, she was still feeling about the same, so Dr. Everitt said she was not inclined to admit her just to “play the numbers game”.  So, more than excitedly, we came right back home. However, within a few days, she started feeling worse, and her daily vitals showed it. Sarah decided by Tuesday that she needed to come back for another tune-up. We headed down to Salt Lake on Wednesday afternoon and Sarah checked herself in for a week or so to get her swelling and protein levels under control and help her feel ok again. Dr. Everitt felt like we needed to run some diagnostic tests to be sure that we weren’t overlooking an infection or blockage or something that could be causing the PLE to act up like this. Everything came back normal and basically unchanged, which means there is no reason for the PLE to be so stubborn, except for her heart failure. Being up against chronic PLE (that we can’t get under control anymore, but just treat the symptoms), Dr. Everitt proposed that we file an exception that would move her to status 1A on the transplant list….

We received a copy of the letter today, and she’s officially been moved up. From Status 2 to 1A in 8 weeks…WOW! We’re shouting a “SAD HURRAH” at that news. It means she gets moved to the top status on the list, which means she’ll get a heart sooner, but it also means that she lives at the hospital now until after her transplant. That’s good, because she can get the protein infusions, diuretics, and nutritional help she needs to feel better and be in good shape for her transplant. But, it’s bad, too, because it means that she LIVES here now. It means that she’s sick… And it means that we’re officially a family apart, which adds a whole new level of stress and uncertainty and emotions we can’t put a name to. If she was just a college student leaving home, this separation would be difficult, but this is so much more than that. Uncertainty is something we’ve learned to live with for the past 8 weeks, but now there are plans and decisions to be made in the midst of more uncertainty.

We’re grateful for the love and the many offers of help and support we’ve received already, and promise that when we get our heads together and on straight, Steve and I will let you know what we need and let you help. We are so very grateful for the many blessings of our Heavenly Father. We KNOW He has a plan for Sarah and for our family. We KNOW we are growing and changing, and becoming more like Him through these experiences. We KNOW we are going to be stronger (somehow) at the other end of this. And, we KNOW that our Savior loves each one of us and KNOWS how we feel and can succor us and lift our burdens when we let Him. For that knowledge, we are so very grateful, and find hope and peace in our struggles.

~Julia

Check… Check… Is this thing on? Oh, there you are! Sorry I’ve been absent for the past few weeks. This post is at least 10 days overdue. But I like to think it’s better late than never. On Thursday, February 21st, Sarah had a routine cardiology appointment with the transplant team. She has these every two weeks. She had gotten a head cold (don’t even ask me how…) and then been feeling really crappy for about a week. Sunday she started swelling, and in just three days she gained 2.6 Kg (5.7 lbs.) and her belly had gotten much bigger. At clinic, we discovered that her albumen level had dipped down to 1.5. So, we got checked in. In the ensuing days, as our usual 3 or so days for a tune-up turned into a week, I also received a reality check. One I wasn’t really ready to accept.

In the past, we’d check in for one, or maybe two rounds of albumen and diuretics, and while the albumen levels are improving, the swelling gets better too. It usually took about 3 days, and we’d be on our way home with a skinny girl that felt so much better. This time, however, things didn’t quite go that way. One morning, about 4 days in, her albumen levels were way up to 2.7, and her belly was as swollen as ever! So, that day we just did diuretics and no albumen. By the next morning labs, her albumen was back down to 2.0…in just 24 hours. So, we started the albumen again.

I learned a little more about albumen levels. (Albumen is a protein in the blood. Healthy people have a level of about 4.0.) Albumen runs through the veins and as the fluids and other things move in and out of the vein walls like they’re supposed to, the albumen draws the fluids back into the veins and through the system. The point at which the albumen does or does not do its job is at a level of 2.5. At that level or higher, it works; lower, it doesn’t. That’s why once she goes home, the protein levels decrease because she doesn’t absorb the protein (because of her PLE) and the fluids aren’t pulled back in correctly, so she swells up, especially in her feet and belly.

So, while all this was going on in her body, she didn’t really seem to be responding like she used to. It was a hard thing to realize that we might just be at that point where we’ve exhausted all the usual medicines and treatments for her PLE, and she’s headed through that downward spiral of declining health and heart failure. On the 7th day, the doctors really left it up to her if she felt like going home or not. We decided that even if we were only home for a few days, it was better than staying in the hospital. So, with an albumen level of 2.0, and her belly almost as swollen as when we checked in, we headed home.

It’s been hard to admit that she’s just sick. She’s always gotten better, and it’s so hard to see her like this…teetering between feeling kinda yucky and feeling plain crappy. (She does still use the words “pretty good” sometimes, too, but I think it’s a term relative to how crappy she felt the day before.) So, when people ask me how she’s doing, I’ve started telling them the truth. That her heart failure is getting worse, and she’s not responding like she used to. That she’s sick, and we’re trying to keep her comfortable and happy while we wait for a new heart.

Just so grateful that we’re already on the list (for 7 weeks now) and that her doctors are keeping such a close watch on her. So very thankful to have good compassionate doctors, an incredible place to be when she’s sick, and all the amazing nurses and support staff to help her and our family through this. We just have to wait as patiently as possible now until Heavenly Father shows us that it’s time.

~Julia