Post-Rejection Biopsy #2

Yesterday, Steve and Sarah went back to Primary Children’s at the crack of dawn for a follow-up biopsy to check Sarah’s rejection. Everything went well. I’ve been told that Dad didn’t remember where to go, Sarah was really calm when she went in for her cath, the anesthesiologist was really cute, recovery was easy, Sarah bossed the nurses, the transplant team at clinic was super excited to see her, and the stop for lunch and browsing at Modern Design with her dad afterward was wonderful.

I have to tell you what Steve said about Sarah bossing the nurses. (This is just a small example of her newly-developed assertiveness in her own health care. Dr. Molina, one of the transplant cardiologists, even commented about how much more confident she is now.) In recovery, there’s a protocol of how long patients need to be “watched” following certain procedures. Since it was just a biopsy and pressure check (only through her neck), and she uses conscious sedation, they usually like to keep her there for a couple of hours. Last time we went in, I think they only kept her for about an hour or so because she was doing so well and heading down to cardiology for another hour afterward for echo and clinic. Well, yesterday, when it had been a half hour-ish, Sarah said she was feeling great, and wondered when she could go. They told her she’d need to stay until 12:30…about 3 hours. She immediately told them that was not necessary because of a, b, and c… and then asked them to talk to the doctor. Apparently, the doctor’s orders were wrong and also didn’t include anything about her echo and cardiology clinic. So, the doctor wrote new orders, Sarah got her way, and after they found her a wheelchair she said she didn’t need, they were on their way downstairs.

REPORT: We got a call late in the afternoon from transplant team. Sarah’s biopsy showed that she still has mild rejection, but it’s improved. (YAY!) Sometime I’ll explain the scale and what all the letters and numbers mean, but the two things we were concerned with was the C (cellular) and V (vascular). The scale goes from 1 to 5 (1 = 0, meaning none… no clue why). C is down to 2.5 from 3, and V is down to 1 from 2.

Here’s the information she got from the coordinator, including our plan of action…

Your biopsy cleaned from C3V2 ISHLT1R, pAMR (-) to C2.5V1 ISHLT1R, pAMR (-) which is very mild cellular that a lot of times we do not treat.

1. Discontinue Nystatin, Ranitidine, and Valcyte
2. You will continue Septra through the first year
3. Decrease prednisone (steroids) to 7.5mg (1 1/2 tabs) by mouth once per day for 2 weeks. On 2/10/14 decrease to 5mg by mouth once per day.
4. Return to clinic for routine visit in 1 month.
5. Make appt for adult hepatologist at the UofU.
6. Labs on Monday (tacro and CBC).

So, she’s coming down on the steroids and discontinuing all the other yucky meds that combat problems caused by them, and returning in a month. They also told her that they won’t do another biopsy then (but wait another month) if everything else looks good, and she’s still feeling great. So, she’s happy and feeling quite comfortable with the plan. She even did a happy dance this morning when she swallowed a few less pills and realized she didn’t have to chase them with a nasty Nystatin swish and swallow. Life is good.

She and Steve are so happy about the results I hesitate to even add my maybe-a-tad-bit-skewed feelings about it. But, we decided in the very beginning to keep this blog real and honest. I’ve been on a journey of self-discovery the past few months, and have realized that I have to be more honest with myself and face my feelings so I can move past them. So, here goes my self-talk (feel free to skip it if you’re also content, and don’t need it)…. First, I need to say that I am very happy that things have improved. And very grateful. However, it makes me a little nervous to not be checking for a while to be absolutely sure the rejection is still improving. After what we’ve been through this past year, I though I’d learned to trust more. I realize that in comparison to everything else we’ve seen and dealt with, this is such a tiny issue. But I’m working through the frustration I feel about not having this resolved (at least in my mind) yet. I’m a fixer, and when things aren’t fixed, I want to keep working at it until it is. Faith and prayer, along with a mixture of trust in the Lord and a team of very qualified doctors and nurses are all I have in my tool box. (That certainly seems like enough, doesn’t it?) As we speak, I’m also working on a healthy dose of positive thinking and gratitude. The facts are: 1-Sarah is better than she was a months ago. 2-The transplant team hasn’t ever given me a reason to not trust them, and they’ve been doing this a lot longer than I have. ๐Ÿ™‚ 3-There is a plan (one they’ve probably used lots of times before) that she will probably respond to perfectly. 4-I can’t fix this. I can only fix my perception and my attitude. 5-I have everything I need, and so does my sweet Sarah. …So, now that I’ve put these thoughts into words, I shall do my very best to let it go…. I’ll put it all back in the Lord’s hands, and trust that whatever needs to happen will. Because God is good. He loves us unconditionally, and blesses with exactly what we need….every time.

~Julia

Courage of Another Kind

DSC_0288Here is my courageous daughter. She has endured so much. Through her endurance, she has also developed faith, maturity, responsibility, and a very positive outlook on life. She is amazing.

On Monday, she had a follow-up biopsy to see if the oral steroid treatment helped her rejection. Everything (echo, pressures, numbers, etc.) looked beautiful. We were all happy (including her transplant team) with how good everything “looked”. When the biopsy results came back, however, we discovered that looks can be deceiving, even in this situation. Her mild cellular rejection is exactly the same as last time. (It’s crazy to me how early on, we were sure she was in rejection several times because of all the indicators in her other tests, and after biopsy, we’d see that her heart was always fine. And, now that she seems to be fine and all other indicators are within good ranges, the biopsies show rejection. I guess that just proves how very necessary those invasive biopsies really are.) The transplant team decided we needed to “bring out the big guns” and do six doses of IV steroids. These are administered every 12 hours and take about 15 minutes each. The kicker is that she has to be admitted to the hospital for three days to do them.

Transplant team decided to let us go back home so Sarah could have the opportunity to go to her New Year’s party she had been looking so forward to. They asked us to bring her back on Wednesday (yes, New Year’s Day) to be admitted. Steve drove down yesterday with Sarah and all of her stuff: guitar, games, book, ipod and laptop, favorite pillow and blanket, clothes, and make-up. She checked in last night, and has already had 2 of the 6 doses.

This girl plans to get dressed every morning, including fixing her hair and wearing make-up. She’s planning to make her bed, play some games, watch a movie or two, get in some very-missed sessions with music therapy and Rainbow Kids, have a paper-airplane contest in the hall with Dad, and spread as much sunshine and happiness as she can while she’s there. I’m so proud of her. I’m sure she’s worried about how these high-powered steroids will affect her. I know she’s frustrated that she’s still in rejection and has to be back at the hospital. I’m positive that it was hard when she realized that after getting off two more drugs last week, she’s back on every single one she had after transplant again. But, after a tear or two trickle down her cheek, she puts on her brave face, and looks for something good. The very best thing about this hospitalization is that it should get rid of the rejection. Another good thing is that it happened AFTER Christmas and we got to be home together for the holidays. And yet another good thing is that she gets to have this treatment while she feels good. I’m not sure she’s ever felt good at the hospital. I really wonder if anyone ever has…. We’re also very grateful for the close watch her doctors and nurses keep on her so we can stay on top of these little bumps along the way.

Here are some of the text messages I’ve gotten from her in the last 24 hours… (Notice the ๐Ÿ˜€ at the end of all of her sentences. For those of you who don’t know, that’s a Sarah smiley.)

Guess what?! …Because we had labs done Monday, Dr. Everitt said no labs…!! ๐Ÿ˜€

…And each infusion is only about a half hour long!! ๐Ÿ˜€

Just got disconnected for the day!! ๐Ÿ˜€

People keep asking my tech and nurse if I get to go home today…. My bed’s made, my room’s clean and sunny, I’m dressed, hair fixed, some makeup, and feeling great! ๐Ÿ˜€

I hope she and Steve will take some pictures of this amazing new phenomenon at Primary Children’s Hospital called “Healthy Sarah”. I’m sure it’s blown a lot of people away.

~Julia

Brown Family Highlights: 2013

DSC_0232bwsmSarah had a heart transplant and now has a perfect Angel heart. We are so grateful for anotherโ€™s unselfish decision that gave her a second chance at life. She is doing amazingly well and is happy and healthy.

Rachel spent two weeks in Iwamizawa, Japan as part of the Sister City Youth Delegation. She loves to travel and had the time of her life. She also spent a week at EFY in Provo last summer.

Bryson learned to swim. He used to hate the water, and now can swim the whole 100 yards required to pass his Boy Scout swim test.

Joshua is learning to play the drums. (Thankfully for us, though, heโ€™s still using a nice, quiet practice pad.) His ever-present curiosity never ceases to amaze us.

Nathan was baptized last month. He loves being eight, and tries really hard to make good choices. He was also excited to be a cub scout.

Steve and Julia kept this great family as happy and sane as possible during our crazy year. Weโ€™re so grateful for the love of so many that supported us in so many ways through such a difficult time.

We have all grown and learned so much through all of our experiences this year. We are thankful for a loving Heavenly Father and merciful Savior whose tender mercies and loving grace gave us the strength to stretch and grow into the people we are now.

As we reflect on the past year, we just feel so much gratitude.

Love. Hope. Family. Faith. Joy.