Thursday, March 22, 2018

Always waiting.

😍

We've been home for 2 weeks! Our time in the hospital felt MUCH longer than it actually was, and our time at home has, interestingly, felt the same. The beeping monitors, IVs, tests, and delicious (for real) cafeteria turkey burgers are starting to seem like a distant memory.

In case you haven't seen them yet, here are a few pictures of Ramona's homecoming! She was so excited to be home, and Daisy was so excited to have us back.


😘

My sisters made signs and hid balloons around the house,
which both girls loved.


Ramona has been doing great since we've been home and hasn't had anymore of her little episodes so far. She's really been on the move (maybe to compensate for being confined for so long?), and has had a couple little tumbles similar to the ones we think had triggered her episodes before, but they don't seem to be causing any problems for now. We're hopeful that stopping her beta blocker will keep those episodes at bay!

We had an appointment in Peoria on Monday to follow-up/recap on everything that had happened in Chicago. The electrophysiologist checked her Loop Recorder and it hadn't auto-recorded any unusual rhythms (yay!), and he talked a little bit about the EP study and corresponding ablation at Lurie. He also noticed that the device had moved a little bit from where it was originally placed, but that's okay. Overall, a good report! They'll continue to check for any auto-recorded transmissions once a month unless we observe anything out of the ordinary and have to push her button. Oh, the doctor also said that an ablation can change how an EKG looks, so they did a new one while we were there so that they would have a new base to compare future readings to.

She's an old pro when it comes to EKGs. Even though those
stickers are tempting, she lies so still and waits so patiently.

We also saw our regular cardiologist, and we went over what had happened and what our plan would be from here on out. While a beta blocker is usually how HCM is managed, she agreed that, in Ramona's case, the risks outweigh the benefits. We will keep her off of it for now and just continue to watch her closely. Her heart rate checked in at 87, which is pretty low for her age, so hopefully her body will continue to keep it down naturally. We'll also have regular check-ups so they can do echos and keep a close eye on her.

We got to see the whole gang there at the congenital heart center, and, let me tell you, it felt like Christmas. I just wanted to give everybody a great big hug. Don't get me wrong, we were thankful to have good doctors up in Chicago, too, but boy is it nice to be back with familiar faces that make us feel right at home. Ramona even gave Dr Albaro a big hug before we left. 😊

While we are SO HAPPY to be home and SO THANKFUL we didn't have to do any major procedures right now, we know that our journey certainly isn't over. We're back to going about our normal days for now, but we're always aware that things could change any minute. It's a blessing to be able to push these big scary things off to the side, but we can't help but remember that they could swing right back in and knock us off our feet at any moment. We've received a bandaid for her situation (which we're very thankful for), but now it feels like we're just waiting for that bandaid to peel off. Always waiting. I still check on her a few times each night because I'm afraid something will happen suddenly. My heart skips a beat every time she plops down, wondering if her heart will do the same. I'm always thinking about the next appointment and wondering if her echo will have changed. *sigh* It's exhausting, but at least we're home, she's happy, and we're all together. And we can hardly wait for the weather to warm up so we can finally play outside!!! 😊

Our next appointment isn't until June 5, which will be our new record if we make it that long! Please continue to keep Ramona in your prayers!

PRAYER REQUESTS:
- For her heart to continue to function as well as it is
- For her heart rate to continue stay low on it's own
- Thanks for her doctors/nurses/staff
- For us (me) to be able to relax/rest
- For her heart to be healed

And, of course, pictures! This time with a bonus video! (Warning: you're going to want to watch it like 14 times.) Daisy is alllll about the PJ Masks right now, and last night Ramona started watching it and copying Gekko. Go ahead, watch it. Both of these girls just keep getting funnier and funnier all the time. 💗


Lunch at our usual post-appointment place!
(Note the sassy nail color. I think it suits her.)

Napping in the tiniest cart.

She always needs to see what sister is up to.

💗

Tiny cone for Princess Anna.
And a bit for Sugar Baby, too. She was so excited/goofy
that I couldn't get a single picture that wasn't blurry.

Daisy always wants to do "projects" these days.
She spent almost an hour working on this project the other day.

Finished project. 😍


When I am afraid, I put my trust in you.
Psalm 56:3

But blessed is the one who trusts in the Lord,
    whose confidence is in him.
They will be like a tree planted by the water
    that sends out its roots by the stream.
It does not fear when heat comes;
    its leaves are always green.
It has no worries in a year of drought
    and never fails to bear fruit.
Jeremiah 17:7-8


2 comments:

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