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