Not Home Quite Yet
Oh, last night was a rough night. Bailey started running a fever just out of the blue - have no idea why. Then her oxygen saturation dropped to the low 90's (it's always at 100) and even dipped into the 80's a few times throughout the night. Alarms going off all night long. And she was having difficulty breathing for a while - couldn't take in as much air as she wanted to - but Trina checked her lungs and they sounded fine. That was really strange too. Wondered if it was a side-effect of the new medication, but it did seem to get better some time during the night. It made Bailey afraid to go to sleep - she thought she might stop breathing and no one would notice. Then at 2:00 in the morning, I hear our nurse Trina pop in and say, "Bailey, did your heart rate just jump up?" She said, "Nooooo, I don't think so." Trina walked out and immediately Bailey said, "Oh, yeah. I feel it now." She was out of rhythm. Oh, what a bummer. So she went out to the nurse's station and sat with Trina for a while since she couldn't sleep anyway, and I dozed off and got about a 4-hour stretch of sleep, but you know how the nights are when you're stressed. I kept imaging the awfulest things. At one point, I had myself convinced that her kidneys were failing. I was so happy to see morning come and my brain get back to working order.
The rounding cardiologist came in this morning and had talked with Dr. Darragh. They didn't want to cardiovert her today -- too soon after yesterday's cardioversion. And, if they held off until tomorrow, that would give her new medication that much more time to get into her system and hopefully help keep her in rhythm once she's cardioverted. So they decided to leave her in flutter a little longer and cardiovert in the morning. Hopefully all will go well in the morning and we'll be home at a half-way decent hour to enjoy some of the day at home.
Since she's out of rhythm again, she's been feeling pretty crappy all day. But she did get a good 3-hour nap this afternoon. Not eating much - nauseous. Trina did track down a wheelchair so I could take Bailey to the top of the parking garage to watch the fireworks tonight. That was fun! Bailey really enjoyed those. It felt good to get out in the cool night air for a little bit.
Hopefully tonight will be a better night.
Love to you all,
Angie
posted by Bailey @ 10:27 PM
2 Comments:
Hi Angie and Bailey,
I left a few comments here several months ago. I have a daughter, Jessica, who was born with complex congenital heart defects - tetrology of fallot with pulmonary atresia (she also has nonconfluent pulmonary arteries and PA stenosis. She's had 5 heart surgeries, suffered strokes, lung bleeds, etc.
Now we are starting to deal with PVCs (premature ventricular contractions) which could turn into ventricular tachycardia. We are discussing what medications, if any, to try for the arrythmias. I realize that Bailey's arrythmias are caused by her atrium and not her ventricular, but I think they use the same meds to help with both types of arrythmias.
I also saw that Bailey had adverse reactions to the amiodarone. That is too bad! I hope the new medication will help her feel better. We are discussing using Mexiletine for Jess. Beta blockers such a propanalol aren't an option for Jess because they can cause asthma to flare up.
My daughter is not eligible for transplant (hers would have to be heart & lung)... so making her as comfortable as possible is our main concern.
I just wanted to let you know that you aren't alone dealing with these issues. Bailey is such a hero in my eyes. I'm sorry that the pacemaker didn't work out but have they discussed putting in an ICD? (defibrulator)? Or is that what she has?
Feel free to visit my blog if you get a chance. I have several under my name. My main blog is: "are we having fun yet?" Jessica has a blog called "Jessies favorites" where she posts pictures of her favorite things and writes about them too. Jess is 19 yrs old but at the level of about a 7 yr old. She is soooo sweet. I think you would just love her.
Again, good luck and my heart goes out to you. I hope and pray that the medication helps Bailey to feel better. ((hugs))
Bailey & Angie -
We thought about you last night
watching the fireworks on T.V. We
are so glad you got to see them.
I hope this morning you feel better and we'll see you this afternoon or tonight. We continue to pray for you!!!!
Blessings to All-
Mark, Dee & Kids
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