Tuesday, November 28, 2023

More Testing Needed


We met with a doctor in Chicago today, and, it turns out, she was one of the doctors who cared for Ramona when she was admitted at Lurie as a baby! We met sooo many providers at that time that I didn't remember her specifically, but it's nice to know it's someone we've worked with before. She also specializes in Ramona's specific condition, which is great. 



The appointment went well today. They don't have enough up-to-date information to be able to weigh the possibility of transplant at this point, but the doctor thinks that it's worth doing some more in-depth testing so their team can get a better look at how her heart is doing. 

So, for starters, she needs to get some bloodwork done soon. They said it didn't have to be today, which was excellent, because she does NOT do well with having that sprung on her. I mean, it's not great when she knows it's coming either, but it's even worse when it's unexpected. 

After that, she'll need to go back to Lurie's for 3 to 4 days to have a cardiac catherization along with other tests. She hasn't had that done since she was 1, so it will be good to get an updated look. They're going wait until after Christmas, so we're looking at some time in January, but we don't know when yet. Then, we'll see what happens from there. Depending on what kind of results they get, they could hold off on listing her for a transplant, or they could list her at varying degrees of urgency. So we'll just wait and see. 

For now, we just need to get past the impending bloodwork and then on to Christmas. But, first, we need to enjoy Ramona's birthday! She's been counting down for a while and tells literally everyone how many days away it is (it's 5, currently).

PRAYER REQUESTS: 
- a smoother-than-usual blood draw
- joy and focusing on the good
- plans and preparations for January
- our weary hearts and minds
- for Ramona's heart to be healed
- for the other kids not to feel lost in the shuffle

PICTURES: 

We spent the night at her uncle's 
house, which she loved. I didn't
get a picture with them, though. 

We stopped to see her aunts on
the way home. 

Thanksgiving day

They had to go out in the snow 
before church on Sunday! 


Building a lego set when we stopped to visit. 





Saturday, November 25, 2023

Back to Chicago

 


There it is. And boy am I glad. 

I utterly hate, HATE that Ramona had to go through so much the last few weeks, but we know it needed to be done. Her heart was pausing for such long stretches that her heart rate was sometimes dropping to under 10 beats per minute at night. Crazy. Just crazy. The doctor said that if it got much slower than that, it could have started causing brain damage. I'm so thankful they replaced the loop recorder when they did, and I'm so thankful she has the pacemaker now (and that both are over with). I'm also thankful that God was watching over her when we didn't even know there was trouble. 

Ramona is doing really well physically. She's had very little pain (almost none), and her wounds look great. She's been more emotional and grouchy than usual, but that's understandable. She has been on a roller coaster. 

And, the ride's not over yet. The doctors here have been sending her files and pictures up to Lurie Children's Hospital in Chicago, which is where she was admitted for a while when she was 1. At that time, Ramona was sent there to see if it was time to look into a transplant, but, thankfully, a medication issue was resolved and everything stabilized. She hasn't been back to Lurie's since then. With everything going on, her doctors here decided it would be good to have a team that deals with transplants take a look at her again. We will be heading back to Chicago to see a doctor there on Tuesday. So we'll see what comes of that. She isn't supposed to have any procedures done, just some of the regular testing she's used to, so that's good. 

PRAYER REQUESTS: 
- safe travels next week
- that God will continue to watch over her and that we would trust his sovereign plan
- that her heart will be healed


Here are a few more pictures from last week, if you're interested:

Video chatting with Daisy 
while waiting for discharge.
Precious.


Her prized souvenir - the loop
recorder they took back out.
She was so excited they let
her keep it! 


Home at last.
So tired; so happy.
(Sweet sign by sweet Daisy) 

"Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 11:28

Friday, November 17, 2023

A Sigh of Relief


It was a long day, but it ended well. Really well. Ramona is settled into her room for the night, where Nathan will stay with her. She feasted on chicken nuggets and ice cream, while snuggling an army of stuffed animals and watching movies. Her grandparents and siblings were able to visit her around supper time, which she was very excited about. Dottie and I are back at the Family House for the night, and she's sound asleep. It all feels like a sigh of relief. 🤍

Thank you so much to everyone who was praying over her throughout the day. It had it's ups and downs, but. overall, everything went about as well as we could have hoped. She was very upset when it was time to go back for her procedure again. They gave her some medicine before heading back that was supposed to help her calm down, but it was no match for her fiery determination. If you know her at all, that's no surprise 🤣 I was able to go with her to the operating room this time and stay with her until she fell asleep, which I am so thankful for. She was very upset, so I'm glad I was able to be with her. 

Ramona wanted me to ride with her,
and the staff kindly obliged.


The procedure went wonderfully, and she did great with the anesthesia. She was very emotional and disoriented for the first couple of hours after waking up, but they said it was nothing out of the ordinary. Once she got past the part where she was crying to go home and asking where we were, she kept asking over and over if Daisy could come see her yet. That was pretty precious. 

They'll be giving her Tylenol overnight to make sure her pain is managed, and she's scheduled to get a chest x-ray in the morning (standard follow-up), and then hopefully head home. She'll have a few days of antibiotics to help ward off infection (they want to be extra cautious since they were going right into her heart). Oh, and the loop recorder they put in last week was removed, and Ramona is very excited that Dr. Ferns is letting her keep it. 🤣 

I feel like I'm forgetting something, but that's all my tired brain can think of at the moment. Thank you again for praying for our family, and especially for Ramona!

PRAYER REQUESTS:

- mainly just thankfulness for God's goodness today

- thanks that "He gives us more grace"

- for a good night of sleep for everyone

- for the next few weeks of recovery

- for her heart to be healed


Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 
He gives strength to the weary
and increases the power of the weak.

Isaiah 40:28-29

Thursday, November 16, 2023

Pacemaker Tomorrow



Though I haven't used this blog in nearly 2 years, I've had "write a new blog post" on my to-do list since the last update in January 2022 (which is a pretty accurate representation of my to-do lists). We were fortunate that there hadn't really been anything significant enough to warrant an update going on in all that time - just check ups every 3-4 months with things remaining stable overall. Ramona did give us a bit of a scare last fall when she was sick for nearly 4 months straight, which we feared was heart-related, but whatever it was ended up blowing over. We have, however, noticed her getting worn out more easily than she used to, which led to her having some restrictions in physical activity for the first time. 

As you may recall, Ramona had a loop recorder (heart monitor implant) put in when she was one to help find the cause of some symptoms she was having, but the batteries in it expired some time ago. The electrophysiologist who put that device in left the clinic, so the device was just left in place for the time being. 

Fast forward to two weeks ago - Ramona had a regular heart check-up, but we also met a new electrophysiologist at that appointment. This doctor was eager to get the loop recorder replaced. Between the severity of her condition, and the symptom of getting tired so easily, she thought it was best to get a monitor in soon to make sure there wasn't anything troublesome going on. Even with a full schedule, she was able to squeeze us in Monday of last week. 

Ramona was worried before the procedure, but, for the most part, put on a brave face until it was time for her to go into the procedure room. Then, she was hysterical - begging us not to leave her and saying she would do anything we wanted if we would just take her home. So that was really hard. But, when she woke up after the procedure, she was in good spirits and eager to go get pancakes for lunch. :) I was glad that we would be able to keep a closer eye on her heart again, and we were all glad to have that procedure behind us.

We had a follow-up visit for a wound check on Tuesday of this week, and I could tell pretty quickly that something was off compared to our usual visits. Her incision looks great and is healing up perfectly, but, in just a week of monitoring, they are already recording frequent pauses in her heart rate that are over 4 seconds long. She had some 2 second pauses noted when she had the old loop recorder in, and the doctor said at that time that they don't worry about them unless they are over 3 seconds...which we are well past now. What makes it even scarier, to me, is that they are mostly happening at night. If something happens in the day time, we always have a defibrillator with us that we could use to at least try and help her, but if something happens at night, we wouldn't even know until morning. 

So, the solution is to put in a pacemaker ASAP. They had been trying to avoid this when she was younger unless it was definitely needed, because putting a pacemaker in a toddler is major surgery. Fortunately, she is just over the threshold where they can put the device in her shoulder (rather that in her chest) and run a lead wire through an artery into her heart, which is then screwed into the heart muscle to keep it in place. 

And, again, even with a busy surgery schedule, they were able to get Ramona in this week - tomorrow (Friday) morning at 10:30. She'll be admitted overnight and hopefully go home on Saturday. She will have limited use of her arm for a few weeks to make sure everything can heal up without getting dislodged, so she'll have sling to help remind her to keep her arm at her side. We are thankful that she will have an added layer of protection with this pacemaker, and we pray that it will serve her well.

Ramona is not happy that she is having another procedure done already. During her appointment on Tuesday, the doctor explained to Ramona what would be happening and why it's important that it be done (it will be very similar to the last procedure from Ramona's perspective - check in, get changed, get some lead stickers stuck on, and go to sleep), and Ramona smiled and said "OK" to all of it. Then, as we were pulling out of the parking lot, she said "bye building! I'll never see you again!" I chuckled and asked why she said that (thinking it was some kind of joke, because she is a hilarious kid), and she said, in all seriousness, "Because I'm not coming back here and I'm not doing any of that stuff." 

So, that's where we're at. 

PRAYER REQUESTS:
- for God to give Ramona peace, courage, and joy leading up to her procedure
- for us to have wisdom in how we care for her tomorrow (and beyond)
- for her procedure to be smooth and successful
- for a quick and easy recovery
- for Ramona to tolerate the restrictions of her recovery and find joy in that process
- for her heart to be healed (I'll never stop praying for that one)
- thanks for Ramona and the precious gift she is to our family (and our other kids, too!)
- thanks for family and friends helping us fill in the gaps even more than usual the last couple of weeks
- thanks for the hope we have in Christ our Savior


Treasures far beyond what I deserve!

"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


Test Results & Next Steps

  Sister snuggles! Ramona had her procedure/testing yesterday morning. She had to stay flat on her back for four hours following the cardiac...