Cardioversion #19

The week was a little eventful for us, but have managed to avoid any overnight stays at the hospital. We went to see Dr. Darragh on Wednesday because Bailey woke up and had gained 2 pounds. She was pretty scared because we've seen that things can change very quickly sometimes. So, fully expecting to get admitted, we packed all our bags for a 5-day-or-so stay. They took labs and did an echo, and Dr. D said that Bailey's heart function was actually improving. Her PA pressure is in the 50's (which is not normal but good for her) and, the most exciting news, her left ventricle is working too good to give up on right now. So he's still not ready to list her for a transplant. We have decided that we will be very grateful for that option if we get there but, for now, we'd like to avoid it. He mentioned again the possibility of an open-heart surgery to repair a leaky mitral valve and possibly remove some scar tissue left from the Berlin Heart cannulas. So, we kind of feel like a whole new world of possibilities opened back up for us. And, her createnine (???) (kidneys) level was back down. That's good! (That kidney thing scared us pretty good.) He changed some medications around and told us that he was comfortable with sending us home and dealing with the fluid at home. However, and this is what I love about Dr. D, he gave Bailey the option of going home or staying for some IV diuretic. He said that if she was too scared to go home and it would make her feel better to stay, he would do that. Just hearing him say he was comfortable sending us home made Bailey feel a lot better. And, I have to say, it made me feel better too. I think I was envisioning in the back of my mind the kidney thing happening again - that happened when she was up to 110 pounds and she's 106 now. We left there just looking at each other and saying things like, "Well, I think I feel a lot better after that visit", "Well, that was good news, wasn't it?", etc. So, we went home and unpacked everything. Ha!

Then, Friday night Bailey took her blood pressure, like she does every night, and it was normal and her heart rate was 85 (which is normal). But for some reason, she took it again, and her BP was good but her heart rate jumped to 104. So she took it a 3rd time, and it was back to 84. All within the span of about 45 seconds. We looked at each other, and just went on with the night. At 2:00 a.m., Bailey wakes me up and says, "Mom, I'm pretty sure I'm out of rhythm." So, I told her to take her BP (to get her heart rate, which is usually a tell-all sign) and it was 114. I told her to go back to bed and we'd call Debbie (our very own personal nurse) in the morning. We end up getting to the hospital for cardioversion #19 at about 11:30. We finally get in behind an emergency surgery at 4:30. (She's not happy - she can't eat anything all day.) But this time they had a tricky time getting her back into sinus rhythm. They had to shock her 4 times and she went into SVT (let's see . . . superventricular tachycardia) and her heart rate shot up to 180. They gave her 2 doses of a medication (adenasine - sp?) to bring it back down to normal. They don't know why that happened . . . whether it was a fluke thing or whether she's been cardioverted so many times that it gets more difficult to get it back. Dr. D wasn't the one who did the procedure . . . not to say at all that he wouldn't have had the same issues. But my hope is that, if there is a next time, he will be the one to do it and he will know just where to perfectly place the pads and it will take only one time. Needless to say, Bailey woke up and was immediately very sore. She didn't even have to move, and she started crying saying her back and her front were really sore (they place a pad on the front and one on the back). She doesn't have burn marks that are any worse than what she's had in the past (about equal to a minor sunburn), but her muscles definitely took a hit. They watched her for a couple hours to make sure she could eat and drink (even though she threw up after she ate) and her rhythm was still good, and they ended up sending us home at 9:00. She couldn't make it up the stairs last night (although she can this morning) so I slept on the couch and she slept in the recliner (about the only place she can get some decent sleep).

Marissa, who has been horribly terrified of "E.T." since seeing the movie about 3 years ago, wanted to watch it again last night to see if she liked him any better. And, it worked! She thought he was more funny than scary, so she has mastered one of her fears. She was with me and Bailey at the hospital all day yesterday and was such a good little girl. We played Aggravation all day. (By the way, for any of you out there who remember the classic marble game, in my day it was played on a pretty big wooden game board. Well, Marissa found one last week in the toy aisle at Meijer - it's a foldable game board and has room for 6 players instead of the 4 in the classic game. It's great fun for all ages - we're having fun in our family playing it. I highly suggest it for all gameboard-loving families!)

We missed out on our orchard plans yesterday, so we're going to try and get out today. Bailey thinks she's feeling good enough to go. So, pumpkins, here we come!

Have a great day everybody!
Angie