Jus’ doin’ nothin’

Today was a relatively quiet and lazy day. The air conditioner in our little apartment got fixed today (it was blowing but not cooling) so we truly enjoyed a comfortable and restful day. Sarah woke up at her programmed intervals last night (2am glucose test, 5am x-ray and 7:30 blood draw), so it was kind of a long night for her. We also slept with a fan blowing on us all night, which really didn’t help either. After 8am glucose check, vitals and meds, we took our time getting moving. About 11:30, we went to St. Mark’s Hospital for an AlloMap test. It’s a blood test that can evaluate Sarah’s body’s response to her transplanted heart. It tells the doctors if she is at a low probability of rejection without a biopsy. If her angel heart continues to do well in its new body, her doctor might choose to sometimes use this non-invasive method of testing instead. It was easy and the hardest part was finding the lab.

We spent the rest of our very good day watching TV, laying around, talking on the phone, spending time on the computer, and unpacking. You’d think in the hospital we’d have had plenty of days like that. Nope. We’ll share her hospital schedule with you sometime. It makes me tired just remembering. But, today was calm, relaxing and totally uninterrupted. Yet, we still couldn’t get to bed early tonight. Our bad but necessary habits of the last 3 months might be hard to break. But, we’re so excited to try! Sarah said that the best thing about today was just sitting around doing nothing. I’d have to agree with that one. I only felt guilty for a half a second.

Going “Home”

So it really happened! Not in the time-frame we had hoped, but Sarah actually got released from the hospital today!! We had a nerve-wrackingly quiet morning while we packed up her room and hoped the doctors hadn’t changed their minds… But, after the go-ahead DSC_0378from the transplant team, removal of her PICC line, a trip to the pharmacy for meds, a 1 1/2 hour cardiac rehab evaluation at the U, another trip to the pharmacy (and still get to go back tomorrow), going over all the meds again and filling Sarah’s pill box with the pharmacist, we finally got to go over discharge paperwork and go “home”! It was close to 5 in the evening when we finally left. Sarah was so tired, a little frustrated, and so ready to get out. She tried to rest while we finalized things and packed the last of her stuff in the wagon to take to the car. (It’s amazing how much accumulates in your room when you’re at the hospital for almost 3 months.)

Our new “home” for the time being is in the Ronald McDonald House and we have one of the long-term care suites that are especially for transplant patients while they are having almost daily outpatient care and don’t live close enough to go all the way home. It’s a nice little 1 bedroom DSC_0384“apartment” with a kitchen, a living room, a bedroom (with two queen beds) and a bathroom. It’s nicely painted and furnished, clean, and is just right for us right now. (These suites are often inhabited for months at a time, and are filled immediately when one becomes available. Miraculously, the timing was perfect for us to be able to have one.) We’re not sure how long we’ll be here. It really just depends on Sarah and her recovery. If she continues on the path she has followed this week, we really will go all the way home much sooner than the four months we originally expected! She’s doing really well, and everyone is so pleased with her attitude, her progress, and most especially her smile!

A few of you have asked about the insulin… The prednesone she’s on is a steroid that works well to kill the immune system and help fight rejection, but it also wreaks havoc on other things. It doesn’t allow the pancreas to do its job very well, so she’s on a daily dose of insulin and has to check her blood sugar levels 4 times during the day and get corrective doses when it’s above a certain number. She’s caught on really well and actually checks it herself. We’re so proud of the way she’s DSC_0387taking care of herself and taking such an active role in her own healthcare. She still doesn’t want to do the shots yet, but handles them so much better than the lovenox. I still hate having to do it, but it’s so much nicer to have her not cry when we poke her. We expect her insulin need to fade as the steroids are weaned, but sometimes they can’t be totally weaned for up to six months. We’ll just have to wait and see how her body reacts to everything.

We’re one step closer to going to our real home and being together again. Sarah is happy. We find ourselves busy still, having have to be at one hospital or another for something almost every weekday except Tuesdays all month, but we’re excited to have some time of uninterrupted rest and relaxation on the weekends and finding a new rhythm in our new “normal”. Transitions are always tough, but I have a feeling this one is going to be good!

~Julia

Is this for real?

Off to Walgreens to buy a few things at the pharmacy to prepare for Sarah’s discharge tomorrow. YES, you did read that right! We spent a full day learning about insulin shots, all of her meds and all their conceivable side effects, and how to survive outside these walls. She got another dose of albumen today and will receive a dose of IVIg during the night to “top off her tank” while she still has her PICC line. We’re so very grateful, nervous, excited, thrilled, and yet, even a little sad. Sarah said it’s like having to say goodbye to family. It’s a transition we prayed for, hoped for, and knew would come, and in our excitement and nervousness, we thank Heavenly Father once again for miracles. Life, strength and recovery.

Honor Bestowed

All I can do tonight is continue the theme from yesterday. The good times just keep coming. As of this morning, the docs informed Sarah that her lungs sounded clear and she wouldn’t need any more respiratory therapy from here on out. She started out early with a heart catheterization to measure the pressures in her heart and take a biopsy sample to check for rejection. Her pressures were a little high, however, there might be a great reason for that. She has had many, many heart caths over her life time and she has always had total anesthesia. Since transplant, she has had to have a breathing tube each time. Today, she had conscious sedation which meant she was not intubated and recovery was quick. This was huge. She gets rather anxious house_bandand this new development will make outpatient heart caths so much easier. So, today’s cath measured pressures without her being assisted by a breathing tube. Would that really make a difference? Not sure, but today could be her new baseline.

We got the biopsy results earlier tonight, everything looks great and there are no signs of rejection. This makes discharge more of an immediate reality.

Every Monday at 4:30 these three beautiful volunteers come and play music in the 3rd floor lobby. They are the Primary Children’s Medical Center House Band. We have fun and they have become an important part of Sarah’s life. They usually dedicate a song to her. The problem for her is they dedicate a Justin Bieber song to her and she really doesn’t like his songs. It’s their inside joke. We love them and their willingness to come every week to give of their time to help the patients here feel better. Many years ago Sarah got a small guitar that she doesn’t use anymore. She’s has been learning to play a regular sized guitar here and is loving it so she donated her little guitar to the music therapy program. Her intention was for it to be used by other kids in the music program. Instead, the music folks have decided to retire her guitar. They love her. She is such a strong and positive person. She is admired and loved by them. They asked her to sign her guitar so they could display it in the newly built patient music studios; Sophie’s Place… right next to another guitar… signed by… wait for it… Taylor Swift!

-Steve

Monday Miracles

Need a miracle? Because we have several we can share! Let’s start off with Sarah’s x-ray this morning. While there was still fluid up around the lungs, it was significantly less. Respiratory therapy still doesn’t hear any more crackling when she is breathing. She asked if her oxygen could be turned down from 1.5 liters per hour to 1 and her saturation stayed above 91. The accumulation of fluid in her belly has slowed and the docs have discontinued her two diuretics today.

But wait, there’s more.

The nutritionists have kept the feeding tube in place because she has been having a difficult time eating enough calories. Today they told her it could be pulled anytime she is ready as long as she is able to eat more. It has been no_more_tubeincredible to watch as she has become more involved in her own care. She asked for a count of the calorie intake and calculated that she could eat what she needed even if she wasn’t hungry or didn’t like something just to make sure she is healthy. She was the one that made the decision tonight to pull the feeding tube. And so for the first time in 6 weeks, she ate dinner without a tube. It has been exactly 6 weeks today that she came out of surgery with her new heart.

But there’s still more!

The discussion began today about how soon to move Sarah out of the hospital into the transplant unit at the Ronald McDonald House. It will be interesting to see how it progresses.

There was concern last week if her body was going to settle down and work with this new heart. After intense prayers from all of you, here she is. Doing amazingly well. Tonight with tears in her eyes, she said, “Dad, I have a miracle inside me. Please, don’t let me forget. I don’t want to waste it!”

Top Heavy

DSC_0308Last night when Sarah was getting ready for bed, she was washing her face and looking at herself in the mirror. Her cheeks and face have been really swollen from the steroids she’s on. She noticed that her face was a little less swollen last night, not as “tight”. She kind of laughed and told me that with her swollen face and her whole, big heart she realized that she feels kind of “top heavy” now. All of her weight used to be in her swollen ankles and feet. But not anymore…

Sarah’s still doing well! The respiratory therapist came in first thing this morning while she was still in bed. She listened to her lungs and said she didn’t even hear a single crackle on either side. Lungs are doing great. Her albumen level is still within “normal” ranges at 3.2. Some other number (I really can’t remember what it was called) indicated that the blood pressure to her liver is good, and her liver is happy. The fluid we expected to be filling her belly with the drain tube gone must have found another place to go. Her tummy is small and still feeling good. She’s eating more with each meal and really enjoying the flavors of food again. Grandma and Grandpa Dixon came for a visit and were so happy to see her looking as good as we’ve reported. She took a really long walk, from her room all the way to our “picnic spot”, were we enjoyed some time outside with Zack’s family in the shade. (It was 90 degrees here today!) We have so much to be grateful for. Today was another good day. I think that’s four in a row now… but who’s counting?

~Julia

 

Vitamin D Therapy

Sarah texted us at 8:30 this morning to let us know that the doctors were talking about her. She texted back about a half hour later and told us that she had good news and to get here quick. We weren’t quite as quick as she wanted us to be. We were still having our weekly cuddle and briefing before we switched places again. We also stopped at the store for some snacks and drinks for our kid that likes to eat again. (Hooray!) When we finally got here, she held out for a bit and finally when we begged her to tell us, she shared her good news. They cancelled her echo today, and postponed it for next week, believing there wasn’t a need today. Her albumen level seems to be holding pretty steady, with her last (smaller) dose of albumen being yesterday afternoon, she was at 3.8 today. So far her belly doesn’t seem to be swelling or draining too much, either. Crossing our fingers that the higher albumen levels are DSC_0278allowing the excess fluid to be absorbed back in and flushed out with her diuretics. Daddy had to go back home for a few days. After what they’ve been through this week, watching the daily miracles and progress following such a hard weekend, I could see that their bond has intensified. It’s so sweet how much they adore each other and how strong they are together. It made me feel a little inadequate to replace him as the caregiver, but she’s doing so much better, I’m not really worried anymore. (We’ve has so many “better” and “good” days in a row now, I was kind of waiting for our “step back” again. Maybe we’re at a point that she’ll just keep stepping forward to discharge. Wouldn’t that be wonderful? With Heavenly Father in charge of this, anything is possible.) She told me she’s glad I’m back again because she missed me. That was all I needed to hear. So grateful that I get to be her with her, too.

She had an awesome physical therapy session today, doing much more than she was asked. They worked on muscle strength and balance, and she even stood on each food for 10 seconds. I hugged her and told her I was so proud of her for pushing herself and she said simply, “wanna get outta here.” Motivation plus. She is getting much stronger and her hands are also a lot less shaky than they have been. She has started texting, spending time on her computer, and coloring again. We pulled the Crikut out again today and made some letters and a puppy for Zack’s door. As we were cutting and sticking paper together she said, “Guess what? I’m back!” She was working on crafts and actually enjoying herself, a lot.

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The highlight of our day was a picnic with Julie and Zack. It was funny how long it took us to all “get it together” to get out of the unit. As soon as one one of the honored patients were ready, we realized a drug was due, or we had to call and reschedule PT, or water needed a refill, or a PICC line had to be flushed, or we had to grab the bubbles… it was quite the project, but so worth the effort. There’s tons of construction going on in the front of the hospital, so we had to go out the south entrance. Across the driveway, there’s a grassy area by the University Hospital where we found some shade and parked the bike and the wheelchair. Three of us ate lunch, Julie blew bubbles, I took pictures and we all smiled and laughed with the simple joy of being outside. There is something so good for the soul in a little “vitamin D therapy”. The weather was perfect, and while the sunshine warmed my face, all the smiles on Sarah, Julie and Zack’s faces warmed my heart.

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