Officially 1A

 

Tie-dye projects

As of Friday night, Ramona is officially on the 1A (highest priority) transplant list. There’s not much to update on otherwise. It’s been pretty quiet from a procedure/testing standpoint. She’s being monitored, and we’re just trying to pass the time and make the best of it. We’ve been going to the play room when we can, playing with toys in our room, reading, drawing, doing laundry, and whatever else we can come up with to pass the time between assessments and meds…which is exhausting in it’s own way. But I’m very thankful that we are (at least for now) able to leave her room. Not that there are a ton of places to go, but it’s much better than being completely cooped up. They had some tie-dye projects set up for the kids to do today, and she absolutely loved that. We can’t wait to wash them out tomorrow and see how they turned out. Between that and getting to eat in the cafeteria, she described today as a great day, which is good.

Between not getting enough sleep, being away from home/family, being tied to a monitor, and constantly wondering if you’re about to get poked, it’s just hard on a kid. And we haven’t even been here a week yet. They are also trying her on an oral medicine to see if that has any impact on her echos and ekgs, which she does not like at all. Thankfully she is tolerating it better with applesauce, because she has to take it 3 times a day. Oh, and she has to get blood drawn tomorrow, so we’re praying they’ll be able to draw back through her IV so they don’t have to poke her, which is just the worst. 

I don’t expect there will be much to share updates about for a while. It sounds like it’s going to be pretty repetitive days for a pretty long time.

PRAYER REQUESTS:

- Rest/sleep (this monitor is being especially noisy tonight)

- For her IV to work for her blood draw tomorrow

- For joy even when things are hard

- Healing and God’s timing

- for our family to be together soon

- Opportunities to share the hope we have

“I will remember the deeds of the Lord; yes, I will remember your wonders of old. I will ponder all your work, and meditated n your mighty deeds. Your way, O God, is holy. What god is great like our God? You are the God who works wonders; you have made known your might among the peoples.” - Psalm 77:11-14

Just when you think you have a plan…

Well, we thought we had a plan for Ramona. Once her test results were finalized and her transplant team had a chance to thoroughly review her case, the doctors decided that there were no surgical options (other than transplant) that Ramona would be a good candidate for, so they are definitely in favor of putting her on the transplant list. Her doctor said there are two options - (1) put her on the 1A list (highest priority) immediately (which would mean admitting her to the hospital now and putting her on an IV medication to help her heart relax while she waits for a transplant), or (2) put her on the 1B list (lower priority and she would wait at home) for the summer (during which time they would follow her very closely with appointments every few weeks) with a plan to redo her cardiac cath in October and the expectation that they would bump her up to the 1A listing and admit her to the hospital at that time. (Phew, that was a lot of parentheses.)

As of last week, the doctors were comfortable with having her wait at home for the summer, with the understanding that if anything happens, or if anything is off at any of her follow-up visits, they would recommend admitting her earlier than expected. So, with that plan in place, we signed the consent forms to add her to the transplant list last week. Once the papers are signed, patients are usually officially on the list within the next 2 weeks or so. 

Then, today, Ramona basically passed out while the kids and I were out of town visiting family. Nothing like that has ever happened before. I caught her as she fell, and it was so scary to hold her limp in my arms. Fortunately, we were very close to a big children’s hospital in Indianapolis, so we took her there. From there, she and I got an ambulance transport up to Lurie’s in Chicago, and Nathan met us here. They are going to keep her here for observation for a while. It sounds likely that they’ll bump her up to the 1A list while we’re here, but everything is up in the air (again) at the moment. But, it does sound like we’ll be here for a while. Once they have a few days/weeks to observe her, they might decide to down-grade her urgency on the list for a while, or we might just be here to stay. 

Getting ready for transport to Chicago.

View from her room on the 22nd Floor

But, no matter where we are or how she’s listed, the doctor stressed the importance of understanding that a transplant could happen at any time. There’s just no knowing when things would line up for her. It’s hard to wrap our heads around the uncertainty of it all. The doctor said that sometimes it has worked out for kids to get a heart within a couple weeks of being in the list, and other times kids end up waiting in the hospital for a year or more. It sounds like the average wait is generally a few months, but you really just never know. 

Also, we’re on the waiting list for the Ronald McDonald House, so hopefully we can get a room there and get the other kids up here soon. We’re just playing that by ear along with everything else.  

Also also, I just want to take a moment to say thank you to everyone who has so graciously and generously been there for us the last few weeks (months?). Whether it’s juggling kids, gas money, snacks and activities to take to appointments, a place to stay overnight, a meal, decluttering my house (and with it my mind), sharing an encouraging word, or quietly battling for us in prayer, we are so thankful for your help, support, and encouragement. I have a lovely pack of thank-you cards at home and the best intentions of using them, but it just hasn’t worked out so far in this hectic season. So, please just know that we sincerely appreciate every kind word and deed. THANK YOU!!

PRAYER REQUESTS:

- I honestly don’t even know how to sum them up at the moment. I guess just all of our little people in all of their places. Wisdom for doctors. Healing. Thankfulness that God will work all things together for our good and His glory. A minimal amount of “pokes” (IVs, blood draws, etc). Hope & joy. Everything else.

And we know that in all things 

God works for the good of those who love him, 

who have been called according to his purpose.

Romans 8:28