We’re Going Home!by Jim

Sat
11 Jan 2020
12:01 pm
1

Our nurse just gave us our discharge instructions, so we’re almost done. Angie has an IV in each arm that needs to be removed, which should only take a couple minutes. We’re happy to be headed home. Thanks again for all of your love and support!

Impending Dischargeby Jim

Sat
11 Jan 2020
10:01 am
0

When a doctors says the words, “discharge papers,” you know you’re probably going to leave today. Things go slowly at the hospital, but it was early this morning when Dr. Motonaga said something about getting Angie’s discharge papers started. I anticipate we’ll be on the freeway home by early afternoon today. Hooray!

The doctors gave Angie her 1-2 week at-home care instructions during their regular morning rounds this morning, which was another good indication that we’ll be out of here soon. She’ll finish loading the new arrhythmia drug at home and continue to adjust her other meds to compensate while she gets to her regular dosage. From here on out, we’ll be trying to manage the arrhythmias with a combination of medicine and hardware (her pacemaker). They’ll check her pacemaker in a couple weeks to see how the medicine is doing. This should allow her body to acclimatize to the new drug and hopefully we’ll see a decreased (or ideally eliminated) occurrence of the arrhythmias.

I’ll do a quick post when we’ve been discharged and before we go so you will know when we’re on our way home. (We’ve had to stay an extra day after being told we were being discharged, so it isn’t official until you’re walking out of the hospital.) Thank you all again for keeping up to date and following along with our medical adventures this time. It means a lot to us that you’re aware of what we’re going through.

Out of the ICUby Jim

Fri
10 Jan 2020
8:01 pm
3

I’m here with Angie in our room on the cardiac unit. Angie’s mom stayed here with Angie while I went and took a nap. While I was gone, they moved her out of the ICU (yay!). Now we just play the waiting game while her new medicine kicks in to stop the arrhythmias. It’s a little frustrating because there isn’t really anything she can do to speed things up. For other recoveries, there have been goals, like walking down the hall 3 times a day, or breathing a certain amount, etc. that she can focus on, but this time the observation is just how for her heart and is out of her control. We’ll make the best of it and try to keep her active.

Speaking of breathing exercises, Angie asked for an incentive spirometer (her absolutely favorite thing about hospital visits) so she can work on her breathing. It’s kind of like a game, except much less fun. She was able to get just above 1000 mL, which is her new high score. We’ll see if she can keep breaking her record. :)

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Shortly after I returned, Angie’s first cardiologist here in California, Dr. Murphy, paid us a visit. It’s been many years since I’ve seen him, but he was still very interested in Angie and had been following her case closely. He had a lot of very kind words to say about Angie, which was very nice. He told us he was always so impressed with how much support Angie has from her family and friends, which he said was so very important in the cases he’s seen. He said he was never worried about us, even though Angie seems to have the worst luck medically, she always takes things in stride and does better than expected. He said she’s the poster child for the adult congenital heart clinic. It was great to see him again and to know that even though he’s stepped away from an active cardiologist role, he’s still very involved here.

Angie’s mom stepped out for a minute, but we’ve got a whole list of movies to watch. Thank you for your care and concern. It means a lot to know you’re following along and aware of what we’re going through. Please comment below if you’d like to leave some words of encouragement for Angie.

Friday Updateby Jim

Fri
10 Jan 2020
12:01 pm
0

Today has been relatively uneventful. We’re still in the ICU, but there’s talk of getting us to a regular room. Angie’s blood pressure took a little while longer to bounce back to normal, which is why we stayed in the ICU overnight instead of getting to a room yesterday. Since it’s on the children’s hospital side, they have fold-out beds in all the rooms, so I was able to stay with her last night. (I’m not sure my back will be able to handle 2 nights in a row, but I think Mom may take the watch tonight so I can sleep in a regular bed.) Her arterial line was taken out a little while ago, which always helps with the comfort level. Angie had an x-ray this morning and an extensive echocardiogram last night all checking to make sure there is nothing wrong after yesterday’s procedure. She’s had her first two “loading” dosages of the new med and she’s not had any of the acute side effects (nausea, dizziness, etc.), which is great news. The doctors seem to be saying we’ll probably go home “maybe tomorrow, but more likely Sunday.”

I’ll probably post again later today or tonight after we are on the floor to keep you all updated.

 

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.