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.
- 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
"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."