In the ICUby Jim

Thu
9 Jan 2020
10:01 pm
2

I’m with Angie now in the ICU. We’ve been back for a couple hours. Angie’s regular cardiologist, Dr. Lui, paid us a visit to give us his take on things. Angie’s in good spirits, and she (finally) got her promised orange popsicle (gotta love children’s hospitals). She hasn’t been able to eat solid foods yet, but popsicles count as clear liquids, which is nice. They decided to keep us in the ICU tonight for the first dose of her new medicine. Angie’s mom is here and we decided to watch the old 1942 To Be or Not to Be, one of our favorites.

Dr. Lui said that the negative side effects of this new drug generally take a long time (years or decades) to become problematic, and for the short-term it should be just fine, and he was optimistic that it should help. Other patients that have gone on it seem to respond well, so that’s encouraging. They need to “load” her on her new medicine, which means they give her the maximum dosage for 5-6 days before she drops to the regular dosage. Unfortunately, during the “loading” the acute side effects include nausea and dizziness. Yay. We’ll only need to stay for 2-3 days, and finish the “loading” at home. So, that’ll be our routine for the next week or so.

Doctor Consultby Jim

Thu
9 Jan 2020
5:01 pm
2

Well, we have good news and bad news. The good news is that the procedure went fine and Angie is about an hour away from waking up and from us seeing her. The bad news is that they were not able to surgically eliminate the arrythmias they found in her heart. Every time they found one and tried to fix it, it just moved to another location. She said they tried fixing it 5 different times, but it didn’t seem to hold. They are planning on trying a new anti-arrhythmia medication and observing her for the next 2-3 days. This new medication is one of the two “strong” ones they use in cases like this. Both of them have adverse side effects, but since the other one didn’t seem to work, they’re going to try this one. Unfortunately, the side effects of this new one include extra strain on her liver, which is already damaged from her current heart anatomy. That’s also why they started with the other one first. Obviously, it didn’t work well enough, so they’ll try this one. The doctor also said that we’ll probably need to go ahead and start talking about another transplant evaluation in the near future.

We knew this was a likely outcome before we started, but they wanted to try the ablation anyway. There’s still a possibility that she’ll take well to the new meds and we can keep delaying our next transplant evaluation, but we’ll just have to wait and see.

Procedure Finishedby Jim

Thu
9 Jan 2020
4:01 pm
1

The message board just switched to In Progress to Procedure Finished. I should be able to see her soon and find out how everything else went. I presume things went well, but I haven’t actually heard from anyone yet.

Still on the Tableby Jim

Thu
9 Jan 2020
2:01 pm
0

Just got another call. Angie is still int he Cath Lab and they’re into the ablation now. He said she’s doing great, though she might still be a few more hours. They are mapping out herheart and they’ve even seen some arrhythmia, so that’s good (they have to see it to fix it). We should get our next update by around 3.

Still Goingby Jim

Thu
9 Jan 2020
12:01 pm
0

I just got a call from one of the anesthesiologists and he said Angie’s doing fine. They’re still in the cath lab and still taking measurements (they have to measure the pressures and such inside her heart) before doing the ablation. I’ll get another call around 1:00 PM with the next update.

Angie’s Arrhythmiaby Jim

Thu
9 Jan 2020
10:01 am
1

While we’re waiting for our next update, I thought I would catch people up on why we’re here today and what they’re going to be doing in the procedure. Angie’s health has been very good for the last few years. Her activity level is considerably high and she’s been feeling well. Unfortunately, over the last couple years she’s been having some arrhythmia. Half of her heart is paced by her pacemaker, but the other half beats on its own. That other part has been getting into bad rhythms that can be bad over long periods of time. When she’s experiencing arrhythmia, she usually can’t tell it is happening at all. She’ll usually just feel a little funny, and be easily exhausted with any exertion. They’re also worried about her general heart function, which is weakened while in and because of arrhythmia. They tried switching one of her medications to something stronger about and a half ago, but that didn’t fix the problem.

And that’s why we’re here today: to fix the arrhythmia. For today’s procedure, they’re first doing a transesophageal echo (TEE) to check for blood clots. For the TEE, they sedate her and put a scope down her throat and check her heart for blood clots. If they find anything, they’ll abort because the risk of breaking loose a clot while they’re in her heart is too high. If the TEE doesn’t find anything, then they’ll proceed with the rest of the procedure. They go in though the arteries in her leg and send another scope up into her heart. Because she has had a Fontan procedure her heart anatomy is a little different and they have to cut through the Gore-tex tubing (connected to her heart as part of the Fontan) to get into the chambers of her heart. From the inside of her heart, they will actually map out the electrical impulses and conductivity of her heart. This process is slow and meticulous. They get a very complete picture of her heart’s electrical characteristics before they try to fix anything. Angie’s anti-arrhythmia medication (the stronger one they put her on 18 months ago) was discontinued Sunday night so that they can (hopefully) catch some arrhythmia while they’re scoping out her heart. That way they can pinpoint the exact location to scar her heart to inhibit the arrhythmia locally. They use the map of her heart to measure how effective their scarring is and whether they’ve actually fixed it. The catheter can burn or freeze the heart tissue and they use both under different circumstances. They’ll probably do some of each in today’s procedure.

They’ve taken all the precautions necessary to have a very safe procedure. There are always risks of complications, but compared to other procedures Angie has had, this one will be easy. The bigger issue is whether this will help. This is the last thing they want to try before moving forward with getting on the transplant list, which we’d love to delay as long as possible. We know it is an eventuality, but we’re not in a hurry to be in that position just yet. So, here’s hoping for the best!

Another Surgeryby Jim

Thu
9 Jan 2020
10:01 am
1

Hello! It’s been a long time since we’ve had a surgery to post about (which we’re very happy about). Today, Angie is going in for an ablation. I’ll keep posting throughout the day to keep everyone informed. The doctors seem optimistic that everything will go safely and smoothly, though they are less certain that the procedure will fix the current problems.

They’ve taken her back and she’s in the cath lab where they’ll be doing the procedure. I should get an update on progress in about 2 hours. They are expecting things to take 5-6 hours today.