Major Change of Plans

We have had a sudden, surprising change of plans. (Apparently that is just the way we do things.) 

During Ramona's transplant evaluation earlier this year, we had asked if there were any other surgical options for her other than a transplant, and we specifically asked about the possibility of a myectomy, which is an open-heart surgery where they essentially carve out some of the extra muscle inside the heart. We knew that this is sometimes used as a treatment for her condition, but it was always iffy if it would be an option for her due to the severity of her case. At the time of her evaluation, they said she was not a good candidate for it. (It is most often used when just one part of the ventricle is thick, and hers is (very) thick all the way around.)

However, now that they have had time to get to know her and her heart, they decided to get a second opinion from another hospital that has more experience doing myectomies on hearts like hers. They sent all of her scans and information to them, and that hospital confirmed that they think she would be a great candidate for this surgery! The expectation is that this will improve her heart function and lower the pressure in her heart and lungs. (They also want to upgrade her pacemaker to a model that includes a built-in defibrillator as an extra layer of protection.) She would probably still need a transplant in the future, but, the hope is that this would help her feel better and buy her some more years (hopefully many more!) with her own heart. Transplants have a limited life and come with their own complications, so the longer we can keep her own heart, the better!

So, all that to say, Ramona has been moved to the "inactive" transplant list for the time being, and it sounds like they expect to get her in for surgery within the first few days of September. AND, as if that isn't surprising enough, she's been so stable since we've been here that it sounds like there is a chance she might be discharged to go home for a couple of weeks until her surgery. So we're eager to see how that will pan out. 

It's been a wild day. To suddenly have a non-transplant option before us is just...wow. We're feeling very overwhelmed and very grateful. 

Speaking of being grateful, while this season has been so stressful in so many ways, Nathan and I were just talking about how we have had absolutely no stress in regard to things like feeding everyone, paying for gas/parking, finding things for the kids to do or play with, or being able to get random necessities as things pop up. Literally every need we've had has been met, and met abundantly. We have so many people to thank for meeting our physical needs, for encouraging us and building us up in love, and for praying relentlessly for us. 

And then, a new surgery option on top of all of that. I recently read a quote that said, "All this, and heaven too?" and I just keep thinking that over and over tonight. 

Here's how you can continue to pray for us in the coming days/weeks:

- continued wisdom & skill for the doctors as we pursue this new plan

- continued protection for Ramona whether we're here or at home

- for a safe and successful surgery when the time comes, and that it would yield wonderful results that carry her for many years to come

- thankfulness for God's unwavering faithfulness through all the highs and lows of life, so much more than we could ask for or imagine

- please also pray for our best bud Marshall and our other friends here that are waiting for new hearts, too ❤️ 

 "But God shows his love for us in that while we were still sinners, Christ died for us."

- Romans 5:8 -

3 1/2 Week Update (No big news)

 

It's crazy to think we've been here almost 4 weeks so far. We are just plugging along, with not much to report. I’ll list a few highlights (and lowlights) for those wondering what we’ve been up to:

- We finally got a Ronald McDonald House room! Our address there is: 
Nathan Barr

Ronald McDonald House

211 E Grand Ave., Room 1007
Chicago, IL 60611 
It’s been good to have the other kids up here the last several days. It's a different kind of hard to juggle all the people, but we're thankful to be able to be together and for Ramona to see her siblings regularly. We're hoping we'll get into a routine that will make us feel less scrambled, especially as we balance Nathan working remotely and our homeschool year starting.

- We moved rooms at the hospital. They have overflow from the cardiac floor in some spare rooms a couple of floors down, and they move their stable long-term patients down here when they run out of space upstairs. Ramona was super excited to move, because we ended up right next door to one of the friends she has made here! It’s also MUCH more laid back and quiet down here. We were sad to lose our bathtub and great view, but it’s really been a good move for us.  

- Our days are pretty quiet from a medical perspective. She gets vitals and meds at set times each day, but other than that it's labs on Mondays (the worst) and an echo once a month. She also needs to get a few vaccines before transplant, so they're trying to get those done, which has possibly been worse than labs. I generally feel like we’re doing pretty well...until it's time for a poke. Then it’s misery and I cry for home and heaven. I have never longed so deeply for the wholeness of heaven as I do in this stage of life.

- There are a lot of fun things to help pass the time during the week. Ramona especially loves playing Bingo twice a week, but there are also crafts and activities, art therapy, a play room, video games, trips to the cafeteria, etc. They also have special events, like “Lurie-palooza,” dance troupes, and magicians. She has also really enjoyed the thoughtful care packages that have been sent our way.

- We recently celebrated her big sister's birthday, and Ramona spent days preparing for it. Almost every craft project she made was made with Daisy in mind - some as gifts and some as decorations. She used her batik dye project to make a banner to hang up, which was particularly beautiful. She wrapped the presents she made in paper towels, and used pipe cleaners to make little dolls and hearts for a party game she made up. The night before we celebrated, she made a list of everything she needed to do or set up in the morning before they got here. It was all just so precious. She loves her family so much. 

That pretty much sums up what we've been doing. As far as HOW we've been doing, this is just a really hard season. So much to juggle. So many feelings (from so many little people). I just continue to pray that God will work all things together for good, and that his abundant grace will cover all of our short comings. I don't know what people do without the hope we have in Christ, because I would be lost without it. Overall, I would say we’re doing better than I would have expected, and I don’t doubt that that is because we are so faithfully covered in prayer. 

We also want to say thank you again to those who have reached out to us in any way. Whether a text, card, care package, etc. we appreciate it! For those who have been wanting a way to help, we are pretty limited on space here, but small items, gift cards (see list below), or money for parking, food, and other expenses would be great. (*Please don’t feel like you have to do anything, but those are what would be the most helpful to us if you are interested.) If you are wanting to provide a gift card, here are the stores/restaurants that we can walk to easily from the hospital and RMH:

Marshall's

Amazon (not a place we can walk to, but we can have necessities delivered)
Whole Foods
Trader Joe's
Walgreens
Chick-fil-a
Subway
Starbucks
Dunkin Donuts
McDonalds
Taco Bell

Again, no pressure to send anything, just wanted to let you know what we could most easily use. :)

Thank you for continuing to cover our family in prayer. Please continue to pray for healing, for wisdom for the doctors, for God’s timing, and for all of us to love each other well in this challenging season. Even though we are here waiting for a heart, I can’t bring myself to ask for one. Knowing that us getting a heart means that someone else is losing a child…I just can’t. I continue to pray that God will continue to watch over her as he has faithfully done throughout her life, and that his good plan for her will come to pass.

But he said to me, “My grace is sufficient for you, 

for my power is made perfect in weakness.” 

Therefore I will boast all the more gladly about my weaknesses, 

so that Christ’s power may rest on me. 

- Romans 12:9 -