Compassion

Three weeks ago Sarah went down to Primary Children’s Hospital with a lot of swelling in her legs and back. When she gets too uncomfortable, her cardiologist, Dr. Angela Yetman admits her and gives her a quick “tuneup”.

Well, that one didn’t last too long and so on Tuesday we came down for another treatment. This includes multiple rounds of IV therapy of the human protein Albumin followed by diuretics. This time she received an IV iron infusion and magnesium. She didn’t react well to the mag. It Sarah017beat her up pretty good last night but she is feeling a bit better this morning. She had a lot vomiting so they gave her Zofran for the nausea and Ativan to help calm her down. It calmed her down so well, they couldn’t wake her up to have her take her night meds.

One overwhelming feeling which always hits me when we come here is compassion. The wellness of the patient is so much more than dealing with the physical difficulties. First thing this morning, a person from food services came it to check on her because they noticed she didn’t order dinner and hadn’t ordered breakfast yet. This wasn’t her nurse. This was someone from the cafeteria. Granted this isn’t your average cafeteria, it’s more like room service at a nice hotel.

Yesterday we met with the Rainbow Kids team which is a small group consisting of a social worker, chaplain, nurse practitioner, nurse, and doctor. They help kids and their families deal with the heavy issues that come with a life threatening illness. These are some of  God’s special angels here on earth. It take greats personal strength to deal with these precious kids that are so very sick. The main focus was for Sarah this time. I can only imagine the heavy burden she carries now that she is fully engaged with her healthcare. Because we were unsure of her future growing up, we tried to keep her out of the information loop so she wouldn’t have to worry about anything other that being a teenager.

The Rainbow kids suggested visiting with a psychologist just to see where she’s at emotionally. She met with Trevor who came out of their meeting saying wonderfully glowing things about this amazingly strong girl.

When she was not doing very good last night, the chaplain from the Rainbow kids came and prayed with her. The nurses have been so attentive and caring. They help hold her hair when she’s throwing up. She’s coming back often enough that they are getting to know her. they love taking care of her because she is so accommodating. She always thanks the IV team and phlebotomist for doing their jobs well. I think she has as much understanding of the people who serve her as they for her.

So, the nurse who is the director for the surgical unit just came in to see if there was anything she could do to help Sarah feel better and brought with her 100’s of movies for her to choose from to help her get distracted. Now we have a smiling person cleaning the room. Okay, now a volunteer came in to teach her how to make paper flowers for a wreath. We have an appointment in a bit to have a doctor that specializes in holistic healing with state of mind and aroma review some techniques to distract her mind when she’s overwhelmed.

How special these people are. While it might be their job and they get paid, they do it because they love the difference they can make. I love them.

~Steve

Still Waiting…

Tuesday afternoon a call went out to the University of Utah heart transplant coordinator to get a report on the liver team’s decision. Still no word. I know this is a really big deal, and they have to follow protocol, have to make sure everything works together for her benefit, but I must not really IMG_2781understand what consideration and research they must be doing to have not reached a conclusion yet. To me, it’s a no-brainer. She needs a heart, she has to have a healthy liver to get the heart… so, give the girl the liver, too!

I’m not sure if we explained this yet or not, but we got a call last week from the heart transplant cardiologist, Dr. Nativi. He called to make sure we understood where we were with everything and our need to be patient while they get everything in order. He did make it clear that she cannot have a heart without a liver. One of the disqualifiers for a new heart is cirrhosis of the liver, which she has (even though it’s in the early stages). But, they would be able to give her a much-needed new heart if a liver was on the list too. We’re back to what we were told in the beginning, that she has to have a healthy heart and liver in order for this to work. So, it’s not just a matter of the liver team deciding what they want to do, it’s more that they have to agree to do the liver transplant, too, so she can have a new heart.

(Sigh…)

So, more prayers and faith and trust and waiting patiently again, until next Tuesday…

~Julia

 

Our Newest Addition

There is little in our lives these days that we have any control over, especially when it comes to Sarah’s health. A week or so ago, Steve decided there was something we could control a little better, and we needed to take matters into our own hands…literally. He brought this home and installed it on the wall in the dining room, right by the kitchen.

It’s quite a novelty around here to just stick your hands out and have foamy sanitizer to lather up your hands with. Joshua’s hands have never been so clean! Steve had been reading Paul Cardall’s blog (he’s a Fontan/heart transplant success story from Utah, and one of our favorite musicians), and realized that even a little viral bug could keep Sarah from getting her heart when it comes. So, we’ve entered the germ-free phase of our journey. And, I think we’re really doing a lot better. I realize that we can’t possibly keep all the germs away, but we must be much more vigilant to keep them away from Sarah. It seems logical that the healthier we are, the healthier she will be. So, I added my own little addition to our front door…..

We may need to add box of masks during flu season, or do something else even more drastic to turn our youngest two boys into little germophobes. But, at least for now we’ve got cleaner hands. And, we’ve done something to prepare for Sarah’s new heart.

~Julia

Patient Patient

Patient…

  1. bearing pains or trials calmly or without complaint
  2. an individual awaiting or under medical care and treatment

Interesting how as a transplant patient (under medical care) you and your family have learn to be extremely patient (bearing trials calmly). I’ve been warned that this is just the beginning….

Tuesday’s phone call was helpful in moving forward the next few weeks by answering some questions and giving us more information, but it Sarah007lacked the one piece of information we most wanted: knowing if Sarah will have a liver transplant, too. Sarah’s liver is not sick enough to merit having a liver transplant right now. However, now that the heart team has decided definitely on a heart transplant, the liver team wanted to revisit the idea of transplanting her liver, too. They think the cirrhosis is not so far advanced that a new heart could possibly heal it in time. However, if there is even a slight possibility that it won’t, it is really important to transplant it at the same time as the heart. By doing that, she would receive the organs from the same donor. The antibody match must be made for her new organs, and they’d be the same in a single donor. It’s just so much safer (and actually easier) to do it that way, and the immuno-suppressants she’ll be on would be the same for both anyway. Well, we made the call to the heart transplant coordinator for a meeting report. Apparently, the liver team have not yet decided, and so we wait again (patiently?) hoping for an answer next week. It’s okay, though because it’s a really big deal, and there is little room for doubt or error. So, with that decision postponed another week, it will be at least October 16th before the regional board can make their final decision and list her.

When Sarah was in the hospital last October, the Rainbow Kids Team at Primary Children’s talked to us about the “art of living with the unknown”. We’re supposed to keep planning and living our lives to the fullest, but be flexible enough to not fall apart if things don’t go how we planned or think they should. I know that talk was just to prepare me for what’s ahead. Everything we plan and schedule in the next year or so could be changed in a moment’s notice, and we have to just go with it, and try to be patient as our plans and responsibilities (oh, and also our children) get shuffled, rescheduled, moved around and cancelled (not the kids). I’m one that really likes to know “the plan”, and although I’ve mellowed out somewhat through the years, not knowing anything about the future for Sarah or our family might drive me absolutely nuts. Seriously. I hope we’ll learn together, as a whole family, how to “wing it”, and be able to find joy in our struggle to master the “art of living with the unknown”. There is much comfort though in knowing that if everything goes well, Sarah will have a new heart and a whole new life when this is all over. It’s the getting there that I’m kinda worried about….

~Julia

The Phone Call

Tuesday in Salt Lake was a busy day…for the heart doctors. All the cardiologists, surgeons, heart transplant teams for U of U and Primary Children’s met together to decide my fate. Okay, maybe it wasn’t that dramatic but it sure felt like it. The heart teams had a meeting to talk IMG_2741about maybe moving forward with the whole idea of transplant. About two the next afternoon, we called the University Heart Transplant Coordinator. She told us about how it went and how all the heart people want to move forward but she didn’t know what the liver doctors thought. So the heart docs have a meeting with the liver docs, surgeons, transplant teams this week to decide what’s going on there…. I have been told several times that I will have a duel transplant – both heart and liver – all the way to “your liver isn’t sick enough. It will heal itself with a new heart.” It’s just soo confusing!

I found out what my blood type is. I have known before, but I forgot. My blood type is A. So that line is shorter than some of the others. (To understand the transplant list and how it works, please look at my mom’s post called: “Heart Evaluation Continued.”) I also found out that my size is a big factor, since I’m small my line is even shorter than we thought. So short that there is only one other person in line with me…well, I guess ahead of me at this point. So that means I could get a heart for Christmas. The nurse said that the transplant surgeons are very busy during the holidays because of all the traveling and accidents. It’s sad to think about but it’s also good too. Which is weird… :/ That is really good that I may get a heart before the point where I’m living in the hospital with machines being the only thing that is keeping me alive. But that kind of killed our holiday plans….

We had planned to go down to Boise for Thanksgiving with my mom’s family and go to Disney Land for Christmas. But when I get to a certain point on the list, I have to be available because the doctors only have four hours to receive the organ, get me prepped, my organ out and the new organ in me or it is useless. No pressure… 🙂 Because of that, I can’t go anywhere. Pocatello is too far away so I eventually will have to move down to Utah, the Salt Lake area to be more specific… Luckily, most of my dad’s family is down in Lehi so I can stay with them. It will be nice to be with people I know and love. That is really comforting because both Mom and Dad have work and the kids have school. So it’s not like they can drop everything and move with me. It will be hard though because we won’t be together every single day….eh, we’ll cross that bridge when it gets closer… Anyway, because of all that, I can’t leave. It would be rude to say, “Thank you soo much for hurrying quickly to get the evaluation done and the decision ready but, I don’t want to be listed until the new year…” Or if I am listed and then leave and a heart is ready for me, I won’t be able to have it because I’m to far away. So, it will go to someone else…after that, who knows when I would get the chance to get a new heart….So, the the whole family is scrambling around to try and figure out when/what we are going to do about our plans… 😀 Mom, Dad, and I talked about what was going on and the change of plans with the other kids last night. That was an interesting conversation…. Nathan asked why I couldn’t just be tended by Grandma and they can just take lots of pictures and buy me things. Yeah, there is no way that I would let them leave me behind. So we have yet to decide the exact plan…

Anyway, after we find out what is going to happen with the Liver/Heart meeting this week, we get to hurry up and wait for next weeks meeting with the Regional Committee to decide what is going to happen…so technically these guys are the one that will be deciding my fate….

I am really freaking out. If my mind wasn’t confused already, it is really bad now!!! I am super excited, nervous, frustrated, mad (sometimes..), just AHHHH!!! So, right now I am just waiting…….

 

— Sarah