Bummer

Hi everyone! We're back in. Bailey's heart is not out of rhythm - that's a plus - but she's putting on quite a bit of fluid again. So, they admitted her for I.V. lasix to get a jump on this. Unfortunately, she only has 2 more days of school left, which means she's missing out on 4 of her final exams. We were SO CLOSE to making it through the rest of the year. I've e-mailed her teachers and are hopeful they'll let her make them up.

Have a good night everyone. Talk to you soon.
Angie

Still Going Strong

Bailey's been in rhythm now for 2 weeks! Yeah!! The fluid around her belly is slowly continuing to go down. She says she has to give Dr. Darragh a hug next time she sees him because she feels better than she has EVER. What a relief. Every morning I wake up and wonder how she feels. Every afternoon she calls me at work when she gets home from school and I wonder, as my phone rings, if she's going to be feeling good. So far, so good!

Have a wonderful evening - enjoy the beautiful weather!

Angie

We're Home!

We were walking from the Heart Center to the parking garage, and Bailey didn't tell me to slow down once! She said she feels better than she has in many months. She even said she can't wait to get back to school so she can see how good she feels walking between classes.

We're gonna go sit outside and enjoy the sunshine!

Thank you all for hanging in there with us. Enjoy your sunshine too!

Angie

Staying Another Day

Fluid's still coming off, but she can stand to lose a few more pounds, so we're here until at least tomorrow (Monday). I'm kind of glad Dr. D will get to see her again before we leave here. Everything seems to be going very well. I just feel very safe when he's around. Not that we don't feel safe here anyway . . . he's just great to have around.

Since we're here another day, we decided to visit the gift shop. We found some fun stuff, but nearly wiped out the shop. Hm. Sorry Tom. :)

Josie and Marissa and I walked down to Taco Bell - it's beautiful outside! Brought Bailey back the lowest-sodium item they had on their menu. Which, in case anyone is wondering, is the hard-shell taco. (The soft shell taco has almost twice the sodium!) That's your lesson for the day.

Have a great day - enjoy the rest of your weekend!

Angie

Fluid Still Coming Off

Today was a good day. Boring, but good. I forgot how the weekends slow down quite a bit around here. Bailey's belly is getting littler and littler. She feels so "light and skinny" again. We'll see if we get to go home tomorrow. You can just tell in her voice that she feels good. She's her chipper little self again. Such a relief. We've been through quite a bit of worry this week. I used to think that worrying meant your faith was weak, but that's not it at all. My faith is quite healthy, but it's only natural for us to worry when we don't know what tomorrow might bring. So I've lightened up on myself a bit along the way.

Josie and Marissa came to spend the night with us tonight. A slumber party like old times. Ha! They're enjoying seeing Jenny, our night nurse, again. Josie went to Chicago yesterday for a class field trip - had a great time. Rissy had a double-header softball game today. She said they won the first one and lost the second one. I hope I don't have to miss any more games.

Well, not much more to report for now. Have a good night everyone.
Talk to you tomorrow.
Angie

Feeling MUCH Better

Oh, what a difference a day . . . and a lot less fluid . . . makes. Bailey slept SO good last night. Unfortunately, she slept through half of Survivor and most of Grey's Anatomy. Maybe a little residual anesthesia but mostly exhaustion from not being able to sleep at all the night before. Dr. Darragh is keeping us here until at least Sunday to get rid of fluid. He came in today to walk us through the medicine changes and give us the results of today's echo. All very positive. The echo had very good results. Yesterday the cath was showing worsening heart function and "numbers" compared to her cath a year ago - which, I have to tell you, was pretty frightening to hear. She's been doing so good. After the cath yesterday, he started her on a medication to make her heart pump stronger, which was to give her heart a little boost as it's probably worn down from working with all that fluid lately. Well, another thing that medication showed him during the echo today, is that her heart function was 60% better than it was last Friday. So! It's looking like it's her amiodarone that is causing all the fluid problems as well as function issues, and not just things "going bad". So, our first step is to dramatically decrease the amiodarone and introduce another drug that is supposed to keep her heart in rhythm without affecting the function of her heart muscle. But, he also put her on coumadin since he expects us to be back in here at some point during this adjustment with irregular heartbeat. At least we won't have to worry about clotting, which was something I've been a little concerned about now that she can't always tell when she goes out of rhythm.

I just can't accurately express how much better she feels today. She's still pretty tired and still has quite a bit of fluid, but she doesn't look 6 months pregnant anymore and she can rest comfortably. She was nauseous and didn't feel like even eating, and couldn't get comfortable at all, and even began having trouble breathing. She slept all through the night last night. In fact, I woke up a few times wondering if she was even alive, but quickly realized (only after a short panic attack) that the monitors would all be going off if that were the case. (Nights can really mess with your head, huh!)

So, we'll see what tomorrow brings. It's been fun hanging out with the nurses and doctors. This is the longest stay since the Berlin Heart that we've had here. So we've been falling into the same routine we had back then. But, thank goodness, it's a much shorter stay this time.

Thank you all for hanging in there with us, and thank you for all the prayers!

Talk to you soon,
Angie

Resting Comfortably . . . Finally!

Bailey had a tough night and long day -- she's accumulated so much fluid around her belly that she just couldn't get comfortable enough to sleep. She was awake sitting up in bed with a nauseau bucket on her lap 10 out of the 12 times that I woke up during the night. She was just miserable. It even got a little hard for her to breathe. She was doing her best to stay positive and upbeat but it just wears on her -- she is scared. She's got a great relationship, of course, with some of the doctors here and that helps a great deal, but she's tired of feeling icky.

Anyway, the cardioversion and cath went well. She's so fluid-filled that he was doubtful the "numbers" were accurate since a lot of fluid can really mess with the heart function, but he's got a plan together. We're cutting back on a medication that he thinks might be contributing to all the fluid retainage the last several months; starting a new medication to replace that one; starting her on coumadin since he pretty much expects her heart to go out of rhythm again and especially since she can't always tell now (because of the pacemaker doing it's job) when she is out of rhythm. So to cut back on the risk of clotting, which is always a risk when the heart isn't beating properly, he's prescribing coumadin. And, he said to "chill out for a few days", meaning here at the hospital, to get rid of the fluid and watch her blood pressure in the midst of these changes. Then, we'll see what the next few days/weeks brings.

Bailey told Dr. Darragh that she needed to be awake this evening by 8:00 to watch Survivor, and luckily for Dr. D, she's beginning to wake up pretty good. So, gotta go!

Have a great evening everyone. Talk to you tomorrow.

Angie

Admitted

The plan is to cardiovert and a cath tomorrow afternoon. Dr. D wants to take a closer look at things and then go from there. He threw out a few ideas he's kicking around, so we're getting a plan together.

We might be here a few days as he might be changing some blood pressure meds around and not comfortable doing that outside the hospital.

Bailey's doing fine and very happy to have some sort of plan in the works. She's just tired of feeling crappy and wants to get back to life.

I'll keep you posted.
Have a good night everyone!

Angie

Home, But Going Back

Sorry - I'm running a little behind in my posting. Bailey was discharged on Monday afternoon. The weird stuff the pacemaker was showing on the monitor they determined was false readings. We found out yesterday (Tues.) that the results of the test looking at her coronary artery flow was negative -- so that's GOOD! But, Bailey's been very nauseous since we've been home, not eating very good, and saying at times that her heart just feels funny - beating in 2 different places, pounding on occasion, etc. She woke up this morning to find it's out of rhythm again.

So, we've been in contact with doctors, and are on our way back to the hospital for some help.

I'll keep you posted.

Angie