Wednesday, March 7, 2018

GOING HOME! (aka - A Good Kind of Whirlwind)

We're going home!!! 💓

We can hardly believe it! When we transferred up to Lurie last 9 days ago, we thought we'd be here longer, and we thought we would be leaving with either a new device or a new heart. Not only are we leaving without those things, Ramona won't even be taking any medicine for now (except a temporary dose of baby aspirin, but that is just because of the procedures yesterday).

Sending her back for all of her tests yesterday!

Her results from her test yesterday were WONDERFUL. Her heart is still very thick, of course, but, despite that, her heart function is basically normal! They were worried about pressure building up in her heart and transferring to her lungs, and those numbers were normal. They were worried about blockage of her coronary arteries, and there was none. They were worried about scar tissue in her muscle, and there was some (which was expected with her condition) but not an excessive amount. They checked the electrical function of her heart and found an extra pathway that would have made it possible for her heart to short circuit, and they were able to take care of it with ablation. She hasn't had any concerning rhythms, blood pressures, or EKGs since we've been here. (Her EKGs certainly aren't "normal" for most people, but they're consistent and good for her.)

We got our sleepy head back after 11 hours of testing and anesthesia.

Cartoons, rest, and lots of water.

Since her heart function is so good and she is still doing so well on the outside, they aren't going to change anything or do anything right now, so they said we can go home! Will the options they talked about before need to be done down the road? Possibly, but today. 😊

And the 10 second pause on the loop recorder? Well, we found out while we were here that she has Sinus Node Dysfunction, which means that her heart doesn't beat at a normal rate. They think that this, in combination with the beta blocker, was likely what caused the pause in the first place. They feel pretty confident that stopping the beta blocker will help prevent similar events. They also don't think they she needs the beta blocker anymore anyway! In her particular case, the Sinus Node Dysfunction causes her heart to beat more slowly than normal. She was taking the beta blocker because, due to her Hypertrophic Cardiomyopathy, we want her heart to beat more slowly to allow it to work more effectively. So, basically, her heart is already doing the work of a beta blocker itself! Just what she needs! Ah-maze-ing. AMAZING.

We are so blessed to be going home, and we know that ALL of the credit for that goes to God. Things have turned out so differently, and so much better, than we could have imagined a few days ago (or even yesterday). Not only that, but we should be able to do follow up appointments back in Peoria rather than coming all the way back to Chicago. (You know I'm excited about that!) We'll continue to have regular check-ups and echos with our doctor there.

She was SO EXCITED to put on real clothes! We couldn't
get them on fast enough! It didn't even occur to me that
she would have missed that. 💓

Today has felt like just as much of a whirlwind as the day we were admitted and transferred to Chicago, especially after the long day we had yesterday. There has been a lot less crying in this kind of whirlwind, though. 😉 We thank God for hearing and answering our prayers so clearly and abundantly. We continue to pray for her heart to be fully healed, and we are so full of thanks for the prayers that have been answered today.

Thank you so much to everyone who has fervently lifted Ramona in prayer, and to those who have sent cards and gifts to brighten our day or help lighten the financial burden of being here. We truly cannot thank you enough.

We also have to say thanks again to the Ronald McDonald House. We cannot repay them for the relief and sanctuary they have given us during our hardest times. To have been able to have Daisy visit and stay with us here was such a gift.

We're spending the night at RMH tonight with Ramona, and my mom is bring our van up tomorrow so we can go home. We're so looking forward to an evening together OUTSIDE of the hospital, real sleep in a real bed, and, of course, seeing Daisy tomorrow. We'll continue to keep you updated on Ramona's story, and we hope that it will be a verrrry long time before we have anything else this "exciting" to report.

- Thanks for protection, guidance, mercy, and anything else you can think of!
- Good rest and safe travels
- For the rest of her swelling to go away quickly
- For her heart to be healed

Sporting the new t-shirt she got when she rode in the ambulance.

Waiting for the shuttle back to RMH.

She was so puffy from fluid build up when she woke up today. 😄
She already looks soooo much better tonight.

Ronald McDonald House gave her a new animal train that plays music.
Seriously, could this place be any more wonderful?

Finally, this is a verse that my mom forwarded to me a few days ago:

"I will give you the treasures of  darkness, 
riches found in secret places, 
so that you may know that I am the Lord, 
the God of Israel, 
who summons you by name."
Isaiah 45:3



  2. I'm so happy for all of you!!! Thinking and praying for Ramona constantly!!!

  3. We certainly have an amazing God! Who delights in lavishing His love on us!! Praising Him tonight with you all!! Continued prayers for your sweet baby girl! ❤️

  4. So very happy for you all! Continued thoughts and prayers ! God is so good....


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