A few years later...

The 2024 Catch-Up Post

Hi again, all -- it's been a while! And welcome to all of our newer friends that are unfamiliar Brandt's saga. I'm actually thrilled to have gotten to take a six year break from blogging, as the subject matter has been pretty quiet. Brandt had his last surgery in January of 2018 and was discharged on his second birthday after 11 days inpatient at Seattle Children's. We've had a smooth ride since then; it seems that his body really likes the last surgery that was done. His oxygen levels, which were around 75-80 from birth to two years old, have settled in at 90-95 ever since and he's been developing into a strong, healthy, rambunctious, smart eight year old boy!

Of course, we have had our hiccups. Anyone who has been around Brandt in his home environment knows that he has a hard time with emotional regulation and anxiety. We followed those rabbit trails through therapy and ended up with an ADHD diagnosis in the spring of 2023. This wasn't entirely surprising because I was diagnosed with the same a couple years before him (I honestly think all three of my kids have had a dip in the ADHD bucket -- Brandt just got dunked) and while the jury is still out on whether or not ADHD is genetic, there's definitely a correlation. 

It took us a long time to find a medication that would help him on a day-to-day basis while we worked on other coping mechanisms because being who he is meant that we had a lot of factors to contend with. He can't have a stimulant due to his heart, also can't have anything that lowers his blood pressure (also due to his heart), and whatever wasn't eliminated by those criteria had to contend with his heart medications to make sure there were no contraindications. It took a LONG time, but we finally found one. It's supposed to help with anxiety too, and seems to be making life a little easier for him, thankfully. 

But back to his heart...

We've moved on with life in the past six years, and it has been glorious. We added another child, Molly, to
our pack of hoodlums in the fall of 2018, moved to Oregon in March of 2019, homeschooled and decided that homeschooling is NOT Mom's forte and went back to public school, took up T-ball and then baseball, and bought a property and moved into a camper in anticipation of building a house in December of 2023. In fact, that's where you find me tonight, sitting on our little Amazon couch in the camper while the kids fall asleep in the bunk room. The house is gonna take a minute to build, but we're hoping to start June-ish. 

During the move to Oregon, we had to say goodbye to Dr. Ruggerie (roo-jerry) in Great Falls and find a new cardiologist at the Pediatric Cardiology Center of Oregon. Maybe I got spoiled with Ruggerie, who seemed to have all the answers, but let's just suffice it to say that I'm woefully unimpressed with the options in Oregon. Ironically, even though we now live closer to Seattle Children's, which was his affiliated hospital and the place Brandt has had all of his procedures done, we are out of their specified region which includes Alaska, Hawaii, Washington, Idaho and Montana...but not Oregon. At first, I was determined to work around this and made contact with one of their South Washington satellite clinics to continue care, but it didn't take long to realize that in the event of an emergency, Brandt would be transported to the closest facility with the capability to meet his needs -- and that would be in Portland, regardless of where our doctor was. Knowing just how much a life flight costs ($72k for a one-way ticket from Montana to Seattle), I figured I'd better settle with second-best in order to have a relationship with a doctor at our local hospital.

So we've been working with Dr. A for the past few years. This doctor is a lovely human being and seems to be knowledgable in their area of practice. However, the communication is lacking and follow-up is non-existent, leaving me feeling like Brandt is on the verge of being forgotten unless I play the part of the squeaky wheel. 

Recently, the struggle has been with his arrhythmia 

and while I'm aware that I've already given you more backstory that you ever would have asked for, you're about to get quite a bit more, so buckle up. Brandt's last surgery, the Fontan, was operated on a portion of his heart that was very near to a cluster of nodes that control the electrical impulses of the heart. I.e. they were performing open heart surgery on the breaker panel. When this arrhythmia first popped up, I found out that Fontan kids often have rhythm issues at some point post surgery because of that close proximity. So we put him on a betablocker and moved on with life.

Thing is, if you Google betablockers, you'll find that the number one side-effect is depression. It took me a long time to figure out what was going on with him, and I won't go into details in a public post for the sake of his privacy but he was hit very hard. It's heartbreaking to watch a 6/7 year old deal with depression. It took a lot of phone calls to convince Dr. A that yes, kids can get depression and we have to look at other options. So we switched him to digoxin, which is supposed to regulate the heartbeat. It worked well for a long time, and the Brandt that I had known before started to emerge out of that fog again. 

However, it seems that it has reached the limits of its effectiveness. Even at the max dose for his weight, he was having breakthrough episodes of rapid heart rate. Calling the office for advice got him strapped into a Holter monitor twice. A Holter consists of three EKG leads that Brandt would have to wear for a week at a time, attached to a small device that he carried around in his pocket. He would have to sit out of PE because of it (his favorite time of day), and walked hunched over constantly because they pulled at his skin relentlessly. It seemed that it was the only idea Dr. A could come up with and we made no other progress until I put my foot down at the third request. Surely they could use the one from a month ago. If they hadn't gotten any answers from that, then another one wouldn't make a difference.

Finally, we got to meet with the arrhythmia specialist, Dr. B. Another doctor, who was very proficient in their chosen field as well, and also in talking down to parents. I spent that hour-long appointment in a verbal sparring match, standing my ground against their initial insistence that what I was noticing wasn't so far outside of the realm of normal. But it was not normal for HIM. If Ruggerie taught me anything, it's how idiosyncratic these defects are and that you can't judge one by the many. By the time we had this appointment, Brandt was having long periods of high resting heart rate, not just the breakthrough spells of 200+. I would often note his HR at 100+ and his oxygen levels would drop periodically -- it was not normal for him to fall asleep in the middle of the day or to have insomnia that kept him awake for three hours after bedtime. Thankfully, Dr B did an EKG and quickly spotted some abnormalities in the printout. Then they were happy to believe me. Sigh.

Brandt's arrhythmia seems to come from two places: one is at the top of his right atrium, the other is the junctional node; "junctional" meaning the intersection of the four chambers of the heart. In the case of some "rogue nodes", a doctor can perform an ablation via cardiac catheter to fix the issue long-term. But the junctional node is a no-no. Messing with it will put a person into heart block which, from what I gather, means no electrical impulse at all and, well...that's a problem. So he's not a candidate for that. 

Ultimately, the next step is a new medication, but it would need to be done under observation due to potential side effects. They would also like to do another cardiac catheter since his last one was pre-Fontan in 2017, so they plan to stack these two things together since they both require an overnight hospital stay. They do catheters to get a better image of the heart from the inside where they can also measure pressures, make sure his fenestration (pop-off valve -- I'll explain in more detail in another post if you remind me) is still functioning properly, and that all of his blood vessels are dilating like they're supposed to. We don't expect the catheter to fix anything. However, if the new medication doesn't work after it has had time to act, he suggested a pacemaker as the next step. Great. I'll take it. (I mean, not fun, but at least it's a potential solution.) We tentatively planned for June as our insurance situation is a little messy right now due to a job change. 

It was only a matter of days after this appointment that I realized we couldn't wait until June. Forget "long periods" of high heart rate -- I haven't seen it below 95 bpm in two days, and while he used to be asymptomatic during these spells, he's now complaining of fatigue, dizziness, lightheadedness, muscle pain and weakness, headache and nausea, and he's often pale and sweaty. To heck with insurance (I had been trying to avoid paying for COBRA), this is a now problem, not a June problem. I called the office to discuss this further yesterday. I didn't hear back.

Today, Brandt missed half a day of school because he was so fatigued he didn't even want to walk. I called in to the cardiologist again and left a detailed message. While I waited for their response, I called Seattle Children's. I wanted to know if it was common for Oregonians to bring their kids north for treatment. "Um, yeah, we get that a lot." (So apparently it's not just me.) Turns out, it wouldn't be too hard to take him up there -- I would just need a referral from our pediatrician. So I called the pediatrician and left a message and after stewing over a suggestion from Tanner for a couple hours, I also called Ruggerie's office. It was an odd situation, but they told me that if I was able to get out there for an appointment, they'd be happy to see Brandt. By dinner time, the pediatrician had pushed through the referral, recognizing it as an urgent matter, and had faxed it directly to Ruggerie's office. I should be able to discuss appointment times with them this week. 

Guess who I still haven't heard back from?

Yep. 

So tentatively, I may be making a rushed trip out to Montana with Brandt in the next couple of weeks to discuss next steps with Ruggerie. At this point, I don't even care what the next steps are, I just need to get Brandt back into the office of a capable doctor. 

It's past my bedtime now so I'm going to wrap up my gripe session. However, you can plan to see more posts on here in the future as we figure out what's going on and how to fix it. As I did last time, I'll leave links on social media to let you know when there's more to read.