Adjustments

august2Sarah’s latest clinic visit was last Thursday, the 29th. We totally failed to post a report the last time (on the 15th). Steve took Sarah that day, and after a week of non-report I volunteered to post a little something, and then followed that up with a non-report. So, here you get a two-appointments-in-a-row report instead. (Let me just say here as a disclaimer of sorts that from this point forward, if you don’t hear a report for a while, just assume things are going along beautifully and our sweet daughter is loving her new life, and she and her new heart are getting along fine. That way you won’t have to wonder. Life is good.)

Sarah’s still doing great! Her transplant team (coordinators, nurses, doctor) are almost “giddy” with joy when we go see them. There’s cheering, laughing, and smiles all around. I told them last week that after our great experiences each time we come see them that if we ever get bad news at clinic, I’m not real sure how I’m going to be able to handle it. So we put in a request to keep to the theme and not go there at all. 😉 Two weeks ago, they discontinued Sarah’s fluconazole (medicine that prevents fungal infections) and had to double her prograf (one of her anti-rejection meds) dose because of the interaction of the two. After waiting almost a week for prograf levels from our hospital’s lab (that’s a story for another day), they realized that they’d need to double them again. After a couple of drug level blood checks, things are at an optimal level and all is well in the med department. Two weeks ago, they also decreased her prednesone (immuno-suppressing steroid). She’s lost a little more of the puff in her cheeks and feels great being at that level. She has also been able to stop taking any insulin, and the endocrinologist cancelled our appointment this month. So, transplant team told her she didn’t need to check her blood anymore. She was super happy about that. She’ll still check here and there as she feels she needs to, but looks like her body’s all done with high blood sugars and we can cross diabetes off her list of possible complications. Echo looked great, white blood count was still low, but coming back up, other electrolytes looked good… all reports were good yet again!

We got to see Zack and Julie there at clinic too, and then they joined us in Sophie’s Place for some music therapy. (Zack’s last biopsy showed a little rejection, so they’re working on re-regulating his meds. Otherwise, he seems to be doing pretty well…busy as a happy and healthy two year-old should be.) It was fun to see them again. We’ve been missing their little family. We made a quick stop to the CICU to see our favorite nurses, and got to see one of Sarah’s housekeeper friends and a doctor in the ICU that cared for her a lot. BONUS! It was fun to show off our healthy girl, and such a treat for them to see how far she’s come since her CICU days! After that, we got to go up and visit a special little almost two year-old girl waiting right now for a new heart. We delivered a bunch of cute little decorations Sarah made for her room, and offered a little love and support. I honestly walked out of that shilohroom strengthened by her mommy and her beautiful perspective. I told her she was “amazing”. Still trying to figure out why I said that…. She responded much the same way I do. I laugh and roll my eyes when people tell me that. I know to them I may appear amazing, but in that situation, there’s really nothing that feels amazing about it. You just do what you have to do, if you want to do so much more than just survive. Thriving and loving and finding joy along the way is the only way, and this mommy (and her sweet family) have found lots of ways to do that. I was so happy to finally meet her face to face, and her cute little angel made us laugh and smile, and totally made our day. After our visit, we stopped at Baskin Robbins for ice cream (yes, we did have ice cream for lunch). Sarah also had a great visit with her psychologist and set some goals to help her deal with being “abandoned” every day by her family while we’re at school and work. She’s still healing, working on getting stronger, figuring out what she wants her future to be (since she has one now), and making necessary adjustments to find her own rhythm. I’m grateful she has a safe (non-family) connection that can help her work through these things. The most exciting thing about those goals, though, is they were a result of realizations and thoughts she had pieced together on her own. Her personal growth has been so amazing to watch. After all the visits and appointments, we had a small supper and visit with Aunt Vesta. She’s my angel of a great-aunt that Steve and I stayed with while Sarah was in the hospital.august1

Since our wonderful visit to Salt Lake, Steve has taken her to Tremonton for blood work twice (7:30 a.m. blood draw) for same-day results to check her prograf levels. Both came back A-OK. 4-times the prograf seems to be a good dose right now. Life’s been good, except Sarah has caught a bit of a sick bug this week that one of us brought home from school. (A week and a half in school, and two brothers already had head colds. Sheesh!) We were so careful, but I guess the bugs have a way of finding the weakest immune system anyway. Now that we know what she can take (which isn’t much) to help her feel a little better, we’ll just keep a close eye on her vitals, and let the team know if anything changes. Prayers will most assuredly help, too. I’m confident this is just a small bump in her new life she’ll need to get used to. Might as well face it now. If she recovers without complication, I imagine this experience will empower her to see that she really can LIVE her life, and survive the irritating germs along the way, too.

~Julia

2 thoughts on “Adjustments

  1. Glad to see Sarah doing so well! Zack also caught the sick bug that Lexi brought home from school. Amazingly he was over it in three days. I’m sure Sarah will get over it soon. Best of luck to everyone. The Alexander’s.

  2. These posts make me so happy!!! Maybe this summer when I’m visiting my Grandma and Grandpa (Gayle and Jesse Wheiler) I can stop by and meet Sarah!!

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