Results of Sarah’s first Angel Heart biopsy came back this evening… NO REJECTION! Although her body’s having kind of a hard time with recovering, it seems her heart is still healthy and strong! So relieved and grateful. We’ll be holding our breaths and praying hard again each time she has a biopsy, but that’s another thing I suppose we’ll have to get used to.

On another positive note,  her kidney function also improved today!

Her tummy is pretty upset tonight, but she’s handling the ventilator with patience and grace. What an angel.

The cath to place her stent will happen after the surgeons are done with thier first case, sometime tomorrow. I feel confident that Dr. Martin will be able to do what needs to be done and all will be well. But thanks for the extra prayers…..they won’t hurt!

Sarah had her first post-transplant heart catheterization today. Things went well. They did a biopsy to check for rejection (results won’t be back til later this evening), checked her heart and pulmonary pressures (lung pressures are fine, other heart pressures are high, but not unusual post-transplant), and found the reason for the excess fluid drainage. When they did her transplant, they couldn’t do a complete repair of her left glen (SVC going into her pulmonary artery) or the conduit for the IVC on the right. Because of this conduit, there is a narrowing in the IVC (inferior vena cava) that squeezes the pressure from really high to even higher as the blood tries to flow into the heart. They will take her back to the cath lab tomorrow and place a stent to open up that narrowed area. If the blood flows through with consistent pressures, there will be less leaking. They wanted to do it today while she was already there, but because there was no surgical or OR backup (just in case) available, they’ve scheduled it for tomorrow. The only part that really stinks about this is that she had to be intubated for the cath today, and they’re keeping it in for tomorrow’s procedure. So, our sweet Sarah is fighting with the ventilator again, and her smile is unavailable again for another day. We are so grateful that they can do heart caths to find out such amazing information and fix the problems that are there without doing surgery again. Our hope (and the doctors’ expectation) is that by placing the stent and regulating those pressures, the leaking will stop and she can get better a lot faster, and make a full (though possibly still slow) recovery. We just have to be patient, and wait again some more…

~Julia

Today started after a long hard night. She wasn’t feeling well because her tummy and gut were objecting to the NJ feed, or her PLE is kicked into high gear after the trauma of transplant…or likely both. After slowing down the feed, they gave her some pain medicine and nausea medicine. After music therapy and a little nap, she felt a lot better. Sarah’s chest tubes are still putting out a lot of drainage (probably also because of her PLE) so they’ve started replacing some of that fluid with plasma proteins and albumen. They also added TPN and Lipids back in since they’ve slowed down on the tube feeds, and IVIG to help with immunities. Still playing a balancing game with all her new meds and the meds that control the effects of those meds. It’s tricky business and I’m so grateful for the amazing doctors and nurses that are taking care of her. Her right lung looked better today, so there wasn’t much respiratory therapy today. But, she sat up in bed for the first time! PT and OT are coming in once a day now to help her get her strength back and teach her how to do things without injuring her fragile and sore chest. She was really tired today and took some good medicine-induced naps.

Some special visitors came to see her today. Grandma Dixon saw her the first time post-transplant today. She has been in Alaska with my sister to help when she had her baby. She brought a special gift that all of my family contributed to…notes, pictures, jokes, poems, and the most touching thoughtful words of encouragement and support. It was fun to look at and read together today. Grandma and Shaunna also made a hospital treasure box for her to fill with little pictures to tell the story of her hospital experience. Super cute project for us to work on later….. Grandma and Grandpa Brown came later this evening and brought some special people with them for a visit. Sister Linda Burton (recently sustained as the President of the Relief Society, a worldwide women’s organization in our church) and her husband. Brother Burton was one of their missionaries when they served as Mission President in Korea when Steve was really little. (Nice to have connections!) We had a wonderful visit, and it was such a pleasure to be in their presence with their sweet spirit of love and compassion. Sarah was pretty tired, but it lifted me and made me feel like the most important mother in in the world…for just a minute. It was really special.

Tomorrow morning, Sarah will have her first post-transplant cath and biopsy to check to make sure the heart is not being rejected, that pressures are good, and make sure the excess of drainage is not from her surgery sites or collateral vessels. I hope and pray things are as good as they look from the outside. I got to watch her echo again today. It was so incredible. I got really emotional, and was so overwhelmed with gratitude and the wonder of it all. I am so grateful and in such awe that I can’t even describe in human words the things I feel when I see that amazing healthy angel heart beating inside her… “Thank you” just doesn’t express it… though I wish there was a way to express it to her angel heart family, to Heavenly Father, to the medial teams, to all who have prayed so fervently for so long…. thank you.

~Julia

It’s been a good day today. We got to the hospital this morning in time to see Sarah sitting up in bed and happy. She brushed her teeth and Rachel fixed her hair and then had a little nap. Her x-rays showed that her right lung wasn’t expanding all the way, so they had her sitting up more today and the respiratory therapist came in everey 4 hours to do some breathing with her. We’ll see in the morning how well she did. They talked about maybe switching to the bi-pap (mask that forces air into the lungs to expand them) which some kids need after coming off the ventilator, but we’re trying to avoid that since she’s doing so well with her smiler free. They removed the RA line (IV going right into her right atirum) and her catheter. Every little thing that gets pulled is another step closer to moving back to the 3rd floor. She also got to enjoy some foods tonight. She’s been eating slushies and popsicles, but also had a little Jell-o and watermelon tonight. The NJ tube is giving her the nutrition she needs, so eating right now is mostly for pleasure and practice until her body gets used to handling food again. She is pretty tired tonight. I left her for the night with a great nurse, melatonin, earplugs and her sleeping mask. Hope she gets some good sleep tonight. Thank you all for your continued prayers and faith…. It’s working!

~Julia

I am unable to express my feelings this morning so I thought I’d let Sarah do it for me.

Click here for the video of Sarah

-Steve

The breathing tube is out!!!!!! She’s such a beautiful pink girl.

The breathing tube is coming out!!!!

Sarah reached over and grabbed Rachel’s hand and put it on her chest so she could feel her new heart beat.

There are many angel people that have played a role in supporting Sarah’s health over this past year. Just one is this beautiful young lady from music therapy.
Let me introduce you to Amanda.
So many mornings in the hospital where Sarah felt so crummy and Amanda would come to play her guitar and sing. It always lifted Sarah up. Healing the whole body, spirit and mind is the mission of Primary Children’s Medical Center.
Amanda would start at the first of the week working with Sarah writing poems, then coming up with melodies and putting it all together and finishing with an original Sarah song.
I was listening to a Library of Congress podcast series on the power of music in healthcare. We are missing the boat!
Adults post-surgery on a self administered morphine drip pressed the button 43% less when good music was used in the recovery.
I have seen the power it has had in Sarah and seen her transformed to better health in her sickness.
Thank you Amanda for your talent and your love.
-Steve

Sarah wasn’t so chipper when I said good morning. I’m grateful to be receiving reinforcements today when Julia Dixon Brown and Rachel Brown get here.
They had to redo the NJ tube last night but it is in and working now.
Some of the docs wanted to wait another day to take out the breathing tube because her chest x-ray was a little cloudy. But after further discussion everyone agreed that her body ought to be the one to make the decision. She is breathing mostly on her own but the machine is kicking in about 4 times a minute. So, the ventilator has been turn all the way down and they will track her over the next hour or so to see how she does. If her body can keep up with what she needs then out comes the tube. I left my rabbits foot and lucky penny at home today, deciding to just rely on prayer.