False Alarms. . .kind of

I was just about to post an update from the ER waiting room when Dr. Bromberg walked in for us, and I already typed all the events, etc. out once on a heart forum we belong to so you'll have to bear with me tonight. It is late and I am spent emotionally so I am just going to cut and paste.

We've had a roller coaster week. Wednesday night after the cardioversion, he did great and then woke up at midnight completely panicky. All day Thursday he was fussy, clingy, whiny and miserable. We called and went in for an interrogation. Better be safe than sorry, right. No flutter. Went home. By 4:00 he was a mess, sweaty, uncomfortable, no energy or appetite. Decided we'd call this AM if he had a rough night. He had a great night! Slept 11 hours. Woke up cheerful. Played, aggravated big sister. Seemed better. Then took morning nap (unusual). I had an eyebrow raised and had that behavior under a microscope but then he ate a plate and a half of scrambled eggs so I thought he was fine. Played all afternoon but again by dinner acted completely miserable and just like the day before, getting clammy and so on. He ate nothing at dinner but did have some chocolate milk. Two hours later bigtime vomiting. Called exchange and Dr. Goel (on call) called Dr. Bromberg right away. Dr. Bromberg called us back and said to meet him at St. John's and we'd go into the office in interrogate again. I feel like an idiot and like I'm wasting their time, but he reassured me that at this point, it is necessary and warranted. He thought the same thing when Dr. Goel told him Connie was vomiting-that he was in flutter again.

Connie is not in atrial flutter again, but is having symptoms of heart failure. We are home now but go back in Monday for the full work up; x-ray, echo, the works. Dr. Bromberg is now leaning toward the thought that it is not the flutter causing the CHF, rather there may be some worsening of the valve issues and it may be time to do something surgically about that. Since he is symptomatically as bad as he was in May with fussiness, sleepiness, vomiting and BNP over 7000, even with being out of flutter since 6/17 and only having three days in and out of it earlier this week, it is pointing more toward another cause. So now we wait and see. He said as we parted in the parking lot, "It's not going to be like this forever. We will get past this." I just keep trying to say that over an over to myself.

We appreciate your continued prayers and support. . .we'll update after we learn the results of Monday's examination and tests. I did ask Dr. Bromberg what happens if his echo looks the same as the last one, same as the one from November when he was clinically in very good shape, yet he continues to be symptomatic. He said that the echo is a tool, but it is not the only indicator and we won't let this go on much longer, meaning we'd have to do something. We just don't yet have a plan for what that "something" is.

Bedtime Update/Dosing Change

We got right back into our routine of Connie going to sleep on his own. He did great for his nap and bedtime tonight. That's a huge relief. Can't stand the tears knowing he might not feel 100%.

Dr. Bromberg emailed me this evening to make one dosing change on the amio. For the next five days, he's going to get twice his current dose, to try to get it in his system more quickly (trying to ward off a relapse). After that, we'll go to the 20cc's, up from the current 12.9cc's. Also, he said that one thyroid test from today was out of the normal range and the other one was still pending at the lab. He's going to talk to an endocrinologist and possibly start supplementing him with a thyroid medication. Ugh. Also, I had reminded him this morning that he had said he wanted to follow the BNP level in Connie so as long as he was getting labs, he said to go ahead and add that to the list. That level is the one that detects/rates the amount of heart failure. Remember back in May when he had it done and "normal" is less than 100, severe heart failure is 900 and his May level was 7000! Today's level was over 7000 again. Unfortunate, and definitely a bit concerning, but he doesn't really know what to think of that number because we knew he was in flutter with impending clinical signs of failure anyway. Research that says what the numbers mean are done on adults anyway, not kids with CHD. Still, we have a record of it and can follow it. I think last month when he was in Children's the number was only around 800 and he was clinically doing worse. He was vomiting then and his liver was bigger. So, see? Who really knows what to make of it?!

We're calling on Friday to find out more about the thyroid thing.

Thanks again for praying. God is an awesome God and we continue to trust that He knows best.

All Done

Connie kept telling them he was "all done" while they were trying to get everything set up. Well, now he actually is all done. He is getting a 12-lead EKG while we speak and once he wakes up from sedation, we'll get a little something to drink and be on our way home. He was cardioverted in only one attempt. The plan is to up his dose to 20mls of amiodarone.

We had the "where do we go from here" talk and basically there are several scenarios that might play out. If he has another breakthrough, the potential is there for catheter ablation attempt and even surgery. Dr. Bromberg is going to plan as if that will happen and he's going to start consulting with Dr. VanHare and Dr. Balzer at Children's and Dr.s Bove and Dick at U of M. I'm glad he's planning ahead and getting everyone to put their minds to work about it, but I sure don't like hearing that we might be looking at O.R. time again. The problem with ablation is it would be very difficult with his anatomy. While it is risky, etc. Dr. Bromberg said, "We can't keep doing this." (cardioversion) There's a lot more to what he said and he did a very good job of explaining the pros and cons of each potential outcome, but I don't feel up to recanting it all right now. The kind of good news is that Dr. VanHare has a pretty neat technique where he actually has the interventionist (Dr. Balzer) put a hole in one of the baffles to allow for better access. I'll post more about it all when/if the time comes.

Connie's now trying some teddy grahams and chocolate milk.

Thanks for your prayers.

Starting

They just got underway. They said "he's a fighter" regarding his nonstop crying whenever anyone came in his room. He got his propafal and drifted off with no dropping sats so we left.

We're here

And all checked in to rm5 of the PICU. Connie's watching Diego while we wait for admitting to come up and get our info.

Home from the Appt.

Dr. Bromberg made a special trip in to the office to see his favorite patient today. We got there two minutes before the doctor and he came out himself to the waiting room to get us. Connie was interrogated where he was found to be in atrial flutter AGAIN (insert frustrated sigh). He tried to pace him out of it, but Connie didn't like that too much. A couple of attempts was all he could take. It was making his A rate 300ish and his V rate 150ish. So now we're all set up for cardioversion tomorrow morning at St. John's. He'll be admitted to the PICU at 7am and the procedure should be at 9am. Hopefully we'll be outpatient as long as Connie doesn't throw any curve balls in there. While they are starting the IV, they will draw a bunch of labs to check liver and thyroid function and get another INR level. If the labs show he's tolerating the current amiodarone dose, meaning it isn't hurting those other systems, then his dose will be increased 50% so he'll be taking close to 20 ml! I joked with him that I'd have to put it in a juice cup now instead of a syringe. The other frustrating thing about all this is that the mode switch was not switching again on the pacemaker. That is getting really irritating and tomorrow when we get more time to talk to him, I'm going to really press for some answers on that one. This is getting really old, making these monthly hospital trips. The good news is that while this is frustrating and a little scary, it's not nearly as scary as surgery or something really invasive. I'm so grateful we're not talking about that now.

High Atrial Rates Again. . .Waiting

Well, Connie has been showing signs of something being awry since Saturday. We've been told recently to see if he strings together a few days of that, since sometimes regular, healthy toddlers can have "off" days. Well, after three days of a poorer appetite, clingy behavior and extra sleepiness, we sent in a pacemaker transmission. Sure enough, he's been having high atrial rates since Saturday, on and off. One episode this morning at 12:30am lasted over 47 minutes. Then again at 2:00am he had another period lasting 30 some minutes. Colleen at Dr. Bromberg's office read the report while I was still on the phone and said she has some questions about it and would page Dr. Bromberg. She called back and said to come in. So now we are going in this afternoon sometime between 2-4. She said he'll probably interrogate the pacemaker again and then decide what to do from there. She reiterated that we shouldn't hesitate to call, even if we feel like we're being hypochondriacs! She said, "Especially with him!! Just call. Better to be safe than sorry." Please pray that God will guide Dr. Bromberg to make the right decisions for Connie and that we can avoid any invasive procedures. I'm not quite sure what the next step is when the medication isn't effective. Is it more medicine? Is it attempting the risky ablation? Who knows.