"Enchanted"

Wow! What fun. Have you guys seen Patrick Dempsey's new movie that just came out in the theaters last week called "Enchanted"? The last time Bailey saw Patrick (in May of 2006), he was in the middle of filming the movie, so we've been looking forward to seeing this movie since then! Unfortunately, we've been in the hospital and can't make it out to the theaters, so we told ourselves that we might have missed opening night, but we'll go see it as soon as we get to go home. Well, we don't have to worry about that anymore, because Disney brought the movie to us! Some of Patrick Dempsey's friends from a local production company here (Lingner Group Productions) and now our friends, Terry and Conrad, went through a ton of red tape and a lot of work to get this done because, of course, the movie isn't out on DVD yet. They had the movie flown out here specifically for Bailey's viewing, and then flew it back out to California. In fact, it's probably back there already. Terry and Conrad saw it with their families last week and came to show us the movie today. They brought us lunch (the BEST hamburgers I've ever tasted. They were REAL meat. It was SOOOOO good) and lots of candy. They had the movie poster framed and it's now dressing up our bathroom door. And we hung another on on the door to our room. It was so much fun! And the movie was great! We really liked it. Patrick did a great job. We are proud to be his friends. Thanks so much, Terry and Conrad, for such a great afternoon!

Well, it seems like a huge step down to talk about hospital stuff, but I do need to make my report. They split up Bailey's chest tubes today so they could see which one was doing what. One of them is draining quite a bit of yellow fluid and the other one is draining less but it is pinkish colored. Not sure what any of that means, but that's my report. Ha!

And, Carol, thank you for the Patrick Dempsey doll! We love it, and have been showing everyone that walks in! It's great!

Hope you all get a lot of Christmas shopping done this weekend!

Love you all,
Angie

Chest Tube Issues

Got the CT scan done today. Haven't heard official results. There's some kind of pocket of either blood or fluid between her sternum and her heart. One of the chest tubes goes up to that spot, so we're not sure why it's not draining. Maybe a chest tube clogged. Her chest tubes are set up so that there are two tubes coming out of her belly and they tie into one tube that drains into the box. Tomorrow they're going to give each of the two tubes its own box to drain into so they can tell if one of them is draining the most. If one isn't draining, they can remove that one, and they might try to unclog the one that's going up underneath her sternum if they think they need to. She still has quite a bit of pain in her chest. She's supposed to be walking quite a bit, but she finds it pretty uncomfortable to stand up straight, so she's not really wanting to walk. She's been really sleepy the last couple days, and they came in tonight to say they're going to give her a blood transfusion because her hemoglobin has been decreasing quite a bit over the last few days. Hopefully that will take care of her sleepiness and fatigue. And hopefully it will help her jump into homework - she's feeling pretty overwhelmed right now. I tried to give her a pep talk about taking baby steps. It was pretty funny, she was getting really sleepy every time she'd try to work on homework - Dr. Cordes, the rounding cardiologist this week, came in during that time she was fighting sleep and he said, "Well, yeah! That would happen to me every time I tried to study philosophy!" Ha! She has been unusually unsociable these past few days -- I'm hoping the blood will help her feel quite a bit better.

Really not much more going on. They're not saying anything about going home yet - they're working on the chest tube issue.

I guess that's about it for today. They're continuing to put up more Christmas decorations. So pretty!

Good night.
Angie

It's Christmas Time!

Ok. We're getting into the Christmas spirit. They decorated the atrium today and put up the big Christmas tree! It's so pretty. We had to go get an echo today, so Bailey and I toured the place to see the decorations. It's starting to feel like Christmas. And, with all the Christmas shows they're showing on ABC every night (tonight was "Shrek the Halls" and "How the Grinch Stole Christmas"), that's helping too.

Bailey and I are taking a little break from our evening TV viewing. We're down in the atrium right now -- I'm blogging, of course, and Bailey's knitting. We're sitting next to the big Christmas tree. I've had an enormous headache this afternoon and evening and feeling pretty nauseous - sinus stuff - and I'm trying to determine whether or not I should eat something and, if so, what it will be. The cafeteria is closed, so it will be McDonalds. Maybe a hefty dose of french fries? Maybe not.

Dr. D said Bailey's echo today was "reasonable". We all kind of laughed at how ambiguous that was, but at least he didn't take one look at it and say, "Oh, my gosh!!" Ha! He did find some fluid between her sternum and her heart - said that might be why her chest still hurts quite a bit. They're not too worried about it, but they are going to do a CT scan to take a closer look. If she was running a fever, they would be worried that it was an infection, but Dr. T said the best evidence is to take one look at her and see that she looks great and is feeling great. She's still draining from her chest tubes. This is, by far, the longest she's ever had those in, but no one seems to be worried about it. If they're not worried, we're not worried. Bailey's weight went down a little again this morning. Still moving in the right direction! Yeah!!

WFMS morning show (Jim, Deb and Kevin) visited today. They were gathering interviews for their radiothon in February. It was good to see them. Mimi sent a gift with Jim for Bailey - a gingerbread house kit. She's already got it done! That helped with the Christmas spirit too. I'll post a picture when we get home. It's so pretty! She figured out how to make icesicles (did I spell that right? it looks weird) with the icing. We watch at least 6 hours of the Food Channel every day, so Bailey really enjoyed working with food. In fact, she's thinking about a career in culinary arts. Thank you, Jim, Mimi and Corbin!

We're ready to go back upstairs. We'll detour McD's. Hopefully by then I'll figure out if I want something to eat.

Have a good evening everyone! And let me be the first to wish you a Merry Christmas and Happy Holidays!

Angie

Hanging Out at Riley

Today was another good day. Chest tubes are still in and still draining. Bailey's still feeling good. Her weight went down a tiny bit today - we're headed in the right direction. She's scheduled for an echo tomorrow. Everyone keeps coming in commenting on how good she looks. Just keep hoping and praying that Bailey will continue her recovery to a long, happy and healthy life. We're a little slow getting back into school work -- but we're working on it.

I walked across the street to the Union at IUPUI today and was surprised (I don't know why though) to see Christmas decorations outside on the hospital. We'd better get home soon or Christmas is going to slip up on me completely unprepared. Having spent Halloween and Thanksgiving here, it's really really hard to believe that December is almost here.

Josie had a choir concert tonight at school. They are selling DVD's of the program, so I'll get to see it! She called me afterwards and was so excited - she said it was really good. Can't wait to see it. And can't wait to see Rissy's two front teeth missing!

Have a good night. Go Helio!

Angie

Continuing to Heal

We woke up this morning to the respiratory therapist opening the door and saying "Good morning, Bailey . . . Good morning, Bailey! Did I wake you up?! Do you want me to come back? What time do you want me to come back?" Let's just say, Bailey didn't take that very well. Even though it was almost 10:00, she had a rough night -- woke up at 4:00 coughing and choking and then severe chest pain. She didn't get back to sleep until about 7:00. And her severe chest pain continued throughout the morning. She has a huge bruise on her chest now. Don't know if that's a result of pulling or injuring something this morning, or if just a deep bruise finally surfacing from her surgery. But her pain has been much better this afternoon and evening, thank goodness. Dr. Darragh came in today to check on her and when she was telling him she was having some chest pain, he said, "Well, I wonder why?" He and Dr. T just has a way of putting us at ease. And we've been a little concerned -- ok, a lot concerned -- about her weight going up, but they both think that more diuretic will make a difference. Dr. T also said they probably had her a little too dry last week and she's probably just establishing her normal. We're still holding our breath a little bit, but it's good to see that no one is panicky about anything.

No official mention of going home yet, but Dr. T said, "Wow, Bailey, you look like you could maybe go home some time." He's good at those profound statements. Ha! She still has chest tubes in -- they were draining a little more today. Don't know if they'll come out tomorrow or not. Bailey's really scared about getting them removed. She is trying her hardest to get Dr. T himself to take them out. She's even asking that he put her under anesthesia to do it, but I don't think she's gonna get that out of him. Don't think removal of chest tubes warrants such drastic measures. He did say they'd talk about it later and to not worry about it right now. Dr. D mentioned getting an echo tomorrow or Wednesday.

Rissy lost her other front tooth. She called me tonight to tell me she pulled it herself. She was sitting on the couch and took a kleenex and just played with it until it came out. She was so excited! Poor Josie is sick - stayed home from school today.

Bailey and I continued our Riley Rummy game. The lead keeps changing. We were tied at 3970 points. It's a close game!

Well, take care, and we'll catch you tomorrow.

Angie

P.S. Diane, you are in our thoughts and prayers. Have Arwin give you a big hug from us.

Continuing to Rest

Another good day today. They turned off the milranone, so Bailey's not connected to her I.V. pole anymore. All we have to take with us on a walk is her chest tube thing. Her morning weigh-ins are continuing to go up. She's now up to 92 pounds. I've been wondering the last few days if her belly is as small as it was after surgery. And, tonight during the dressing change, I decided that it's starting to get big again. She's not on much diuretic and she's not peeing much -- I'm hopeful it's just a diuretic issue, but we'll see. Her left foot isn't as swollen today as it has been the last couple days, so that's good.

She walked downstairs for lunch and back up today, and did fine. Boy, I'm anxious for McDonalds to open back up -- the cafeteria isn't doing too much to pick up the slack. I was hopeful the grill would be open all weekend, but it hasn't been. They're keeping the deli open until 2am, but that's about it. I never thought I would be anxious to have McDonalds back, but I am. Ha!

We played a lot of cards today. Bailey and I started another "5000 Rummy" but we've decided to not limit ourselves to 5000 and just keep going as long as we can. We've now termed it "Riley Rummy". We're going to keep our scores and continue with them as long as we're here. We'll see how far we get. We taught Rissy how to play Rummy today. She's doing a great job!

Our plan is to start school up again tomorrow. Bailey's feeling better than she has in months, and she thinks she's ready to pick it back up. Wow, she's got a ways to go to catch up. If anybody can do it, she can.

Have a great week, everybody! I hear it's cold outside.

Angie

Yet Another Quiet Day

Wow, the hospital's deserted. The good thing is, that makes for lots of rest and time to heal. Bailey continues to feel really good. Her left leg from her knee down is swollen, so they did an ultrasound today to look for any clots - they didn't find any. So that's great! We'll see what they say tomorrow. They went down on the milranone today - the last I.V. medication she's on. The chest tubes are barely draining - they'll probably be coming out soon. She walked all the way down to the cafeteria this morning and back up to her room. Doing great!

Rissy's spending the night with us tonight. She spent the night at her cousins' house last night and I think they stayed up a little late, because she was out by 9:00. She's so sweet - can't wait to cuddle with her.

That's about it for today. Slow and steady progress!

Good night.
Angie

A Quiet Day

Today is a nice and quiet day. Dr. T came in a few times to check on Bailey. They're now treating her for a urinary tract infection. Just another something to add to her many experiences. The hospital looks like it did yesterday - deserted. McDonald's is closed until Monday afternoon for some major repairs of some kind and with the holiday -- it's gonna be a long weekend.

No word about when we might be going home. They've learned not to say, and we've learned not to ask. Just taking one day at a time.

We hear it's cold outside. I lay by the window at night and I do notice it getting a little cooler by the window. We heard it snowed a little bit yesterday too. I think I'm going to have a little difficulty getting into the holiday spirit this year. Having missed out on the traditional Thanksgiving, I'm not ready to jump right in to Christmas. Boy, we woke up this morning to all the hullaballoo on the news about the millions of shoppers out there today for Black Friday. I have to admit that I've never been one to shop the day after Thanksgiving. I'm not a big shopper, and that must be why. I know what Santa's bringing Bailey this year -- shirts that fit! Ha!

She's doing incredibly well. She still has her chest tubes - they're still draining. Dr. T says he fully expected for her to have her chest tubes in longer than normal since she had so much fluid on her. They turned the epinephrine off this morning. So, continuing to whittle away at all the tubes and lines. Yeah! Slow and steady - that's the way we like it.

Have a great evening! We're going to watch the lighting of the Christmas tree on TV. We'll look out the window to see if we can see a glow. Ha!

Talk to you later.

Angie

Happy Thanksgiving!

Surgery was one week ago today. The leaps and bounds that Bailey has made is nearly unbelievable to me. I caught myself just now staring at her while she sits on the edge of the bed coloring. Her hair's up in a messy bun, the color of her skin is just gorgeous, her arms and legs are a bit on the skinny side, and her belly is . . . well, what belly?! Truly a different person. Incredible. She walked two laps around the heart center today and didn't even get out of breath. She hasn't been able to walk any distance at all without getting out of breath in 6 months. I am so grateful that Dr. D and Dr. T joined forces again to get Bailey where she is today. There were no promises - just clarification of the risks. Bailey has such a complex heart condition that there were/are no certainties. Relying on faith really is the only way. I wonder at which point I would have become unable to function if I didn't have my faith. I just thank God that we have Him to carry us through this.

Bailey has had an incredible day. We still live day to day, but with each day that passes I feel like I can breathe a little easier. It was sad not to be able to celebrate Thanksgiving with our extended family today, but we were very content to be where we are. People keep commenting on how we must be tired of this place and ready to bust out of here, but truly that is not the case. This place has provided us with peace, love, and hope - how could we be ready to bust out of here?

We watched the Macy's Thanksgiving Day Parade from beginning to end today. That was fun! And we were delivered two plates of homemade Thanksgiving dinner. How wonderful! And mom even made Bailey some low-sodium stuffing. It was wonderful!

It's been a very low-key and restful day today. Bailey took one nice nap, but has been awake and perky all day. So, so, so nice to have her back. Dr. T came in a couple times to check on her today and he asked me how I thought she was really doing, because since she never complains about anything, it's kind of hard to get a feel for how she's feeling. I told him that two nights ago we were watching TV and she, out of the blue, said, "I'm so happy, I just wanna cry." He was happy to hear that, but then went off on a tangent about what's wrong with women -- they cry when they're happy and they cry when they're sad, blah, blah, blah, blah, blah. Ha! He seems to be very happy with where Bailey is right now. He's just an incredible surgeon. I really wish there was a way for us to accurately express our gratitude to him, but I really don't believe it's even humanly possible to do that. There aren't words in the English language extreme enough to get the job done. One of these days, and probably sooner than later, I am going to fall on my knees and break down. Given about 90 seconds of letting my guard down, it will happen.

I hope you all are enjoying your time with your families on this Thanksgiving day. I hope that you can be grateful not only for the wonderful things in life, but also for the challenges because they are what build our faith and shape our character.

I love you all out there - family, friends and strangers - for all your prayers - past, present and future - and for hanging in there with us. Happy Thanksgiving!

Catch you tomorrow.

Angie

Another Good Day

Bailey had episodes of low blood pressure today, but no one seems to be too concerned. They seem to be thinking it might be a dehydration issue so they've given her some fluid. She had a small fever last night and now today she was pretty achy and has thrush (a sore throat and white stuff on her tongue). Dr. D came in and said, "So we gave you the crud on top of everything, huh?" Probably just something she picked up here. This afternoon and evening have been really good. She's felt so good, in fact, that she took 2 walks! Yeah!! She hasn't walked further than 6 feet in the last 4 weeks. And she did great. She said she felt so light. I can imagine! We walked down to the vending machines, and she purchased about $7.00 worth of snacks.

Rissy is spending the night with us tonight. We're so excited to have her here with us. Josie went home with Tom. They're coming back in the morning for Rissy and they're going to Aunt Vickie's to celebrate Thanksgiving. Bailey and I are going to watch the Macy's parade and just hang out - we'll take a few walks around the heart center, eat some snacks, take some naps, and just be thankful to God for all of our many, many blessings.

Hope your Thanksgiving is the best ever! Ours already is.

Angie

Well, What Can I Say?

I stand in awe of God's miracles once again. And I stand in awe of Bailey's strength and courage once again.

We are back on the Heart Center and feeling great! Bailey got rid of 2 more lines today -- her foley cath (and yes, Claire, she can wear underpants again! Ha! She would be totally embarrassed if she knew I just wrote that, so don't anyone out there tell her, OK?) and her central line. The cental line was an experience. It was basically a heavy-duty I.V. that they stuck in her neck during surgery. It was stitched in, but all the lines attached to it made it so heavy that it was pulling on her neck skin. It just looked completely uncomfortable, although she never complained about it. She just asked that whenever they were hooking anything up to it that they be careful and not pull on it. Well, duh. Anyway, Dr. T came in with his nurse practitioner and said, "I have to go over to Methodist, so let's get this line out." There were about 6 of us gathered around her bed holding her hand and performing various other "duties" as the nurse practitioner snipped the stitches and then took out the line. I wasn't expecting what came next. She held a big patch of gauze over the area, but it started turning red . . . and redder . . . and redder . . . I saw the look in the N.P.'s eyes and tried not to get excited because I was the one holding Bailey's hand to calm her down. But when I saw the blood pooling at the edge of the gauze getting ready to run down the front of her chest, I said, "It's gonna . . ." and that's all I got out before it ran down her chest. Bailey could feel the warm liquid and I grabbed her gown and started blotting as quickly as I could so she wouldn't see any of it. Dr. T leaned over to look at it and said, in the calmest voice ever, "Ok." Then he turned around to wash his hands and get some gloves on and came over with a clean patch of gauze and took over. He removed the already soaked gauze and tossed them in a plastic dish on the bed and Bailey perked up and said, "What's that?" I said, "Just don't look, Bailey." She said, "I wanna see." So she looked and I was completely and totally impressed at her ability to hold it together. I don't think she would have been nearly at ease if Dr. T wasn't around. He's just incredible. So, he got it to stop bleeding, put some little strips on it to hold it together, dressed it, and then our nurse Anne and I and Scott started cleaning everything up. We even had to wash her hair - it was soaked too. Anne was sneaky and threw a bunch of sheets on top of Bailey's bed behind her so she wouldn't see that. We ended up having to throw away her pillow from home because that's the one she was laying on and it got soaked too. I just thank God that I can handle the sight of blood. Bailey's comment later was, "Well, I wanna be a nurse so I have to get used to it." Her strength amazes me.

She hasn't had any problems with her BP all day. She even felt so good that she called her best friend, Paisley, today. She hasn't been wanting to talk on the phone to anyone in weeks. It's just been one joyous day. It's so good to be back on the heart center, although, I have to make it perfectly clear to everyone out there that our nurses in ICU were wonderful. Stacia, Waenita, Anne, Sheila, Erica . . . I'm sure I forgot someone else, but they all took very good care of us. If you have to be in ICU, Riley's the place to be.

Tom and the girls are here tonight. Bailey's having a great time visiting with her sisters. She hasn't felt like doing that in weeks, either, so it feels like old times. Everyone's commenting on how it's so nice to see the old Bailey again. That's so true.

We're not out of here yet, and Dr. D reminded us today that things "still aren't perfect", but today was a good day.

Good night!

Angie

Check this out!

Nitric is off!

Foley cath is out!

Central line is out!

CVP and BP good!

Going to heart center!

Fabulous!

A Great Day

CVP is down and BP is staying up there! Such a great day. Is this a roller coaster, or what?! Bailey's been awake all day (with the exception of 2 naps), eating well, playing cards, keeping the doctors happy with her numbers, and just feeling really really good. Her BP dipped once today into the 70's, but they gave her some fluid and it went right back up there. She's had some headaches too, but they didn't last for long. Coughing is still very rough. She has such a hard time coughing -- can you imagine crying, coughing and stabbing chest pain all at the same time? It breaks my heart to see her in such pain.

Dr. T said the function of her left ventrical is dramatically improved over the post-surgery echo. Yeah!! He said today that this is looking more and more like just post-pump recovery, but we still have a few hurdles to jump. As Dr. D says, "We're not out of the woods yet," but I'm celebrating. Who knows what tomorrow or next week or next month or next year might bring, but I'm celebrating. Bailey looks so good. Since the drain procedure didn't have a whole lot of success, I was kind of scared to see all the fluid taken off during this surgery. I was so afraid that it would either just come right back in 3 days again, or her body just wouldn't be able to function without it and have great difficulty in recovery. It's such a heavenly pleasure to see her sit on her bed with her legs pulled in and crossed in front of her. She hasn't been able to sit like that in many months. It does my heart good to see her happy and feeling good. We kept telling each other during those last days before surgery that the surgery is just a pathway to getting her to feel better, and it has been just that. I just pray that it lasts . . . for many, many decades.

Nitric is down to 4. Maybe back to the heart center tomorrow? We'll see.

Good night, everyone! Life is good.

Angie

An Early Update Today

This early update is for all you supporters out there whose anxiety takes control of your day when you have to wait for the evening post. Ha!

Bailey woke up "bright eyed and bushy tailed" this morning. She, again, sent me to the cafeteria for cheesy potatoes. She weighed in at 81 pounds. Still slimming down, but hopefully that will stop soon - don't really want her withering away to nothing! She sat up and got out of bed all by herself today! Says her chest pain (except for when she coughs) is a 1 (on a scale of 1 to 10).

Dr. T stopped in this morning to admire his work. He calls it "Body by T". I told him I have a couple brothers-in-law who have asked for the same thing Bailey had done. Ha! He is weening her nitric down by 1 every hour. He says this will be the test -- to see if her CVP stays down and her blood pressure stays up. Now we know what to pray for today.

Have a great day everybody! Talk to you tonight.

Angie

Today Was a Good Day

Bailey slept great last night. She woke up about every 2 hours asking what time it was, but then she'd fall right back to sleep. She sat on the side of the bed this morning to eat her breakfast - she sent me downstairs for cheesy potatoes and a banana. She also stood up and stepped on the scale and she's back down to 86 pounds!!!! The 2 kilos (4 pounds) she gained yesterday disappeared. She has little skinny feet again. When she got back into bed after breakfast, her BP bottomed out again and her heart rhythm started looking weird. So, in the matter of minutes, they had a whole team of people in here taking chest x-rays, an EKG and an echo, and discussing the results. It is always quite stressful when a whole team of people are gathered in the room. They were talking amongst themselves and I was trying my best to listen and capture everything they were saying, but it all basically went over my head. They made some adjustments to her medication, and attributed her rhythm issues to her pacemaker, I think (at least they said she wasn't in flutter) . . . and said her echo looked better than it did yesterday. By the time Dr. T came in early this afternoon, her numbers were looking a lot better. In fact, he was pleased with her numbers. He told Bailey he still can't guarantee she won't have to have a VAD (in case this isn't just post-pump recovery), but he was pleased with the way things looked today.

She slept quite a bit today - so much so that I was concerned that she just wasn't feeling well, but around 5:00 this afternoon she wanted to sit up and sent me to get dinner. And she was sitting on the side of her bed for about 2 hours. She smiled and laughed and enjoyed a visit from Aunt Cindy and Uncle David. Several times today, she has just wanted to stand up for really no reason other than to just stretch her legs. She is using me and her nurse less and less to move around and stand up. She still needs help to sit up and to lay back down, but improving every day. She got her pain ball removed today. That was a really cool invention -- it's about the size of a baseball and it's filled with lidocaine. It had 2 wires attached to it and ran underneath her skin on either side of the incision on her chest, and it continuously fed numbing medication to her incision. It worked great! But you could really tell when it ran out - she's had to ask for morphine quite often. She was afraid to have the ball removed because she thought the wires would hurt coming out, but Juanita had them removed before Bailey even knew it. And the dressing change went much, much easier and quicker today. With each wire or tube that's removed, her state of mind gets a little more at ease. She'll be dancing the halls when the foley cath and her chest tubes are out.

And they say her rhythm is still doing strange things. But it looks awfully smooth and steady to me. I don't know what the rhythm issues are all about or how serious they are, but it's not flutter.

So, although we again don't know what tomorrow might bring us, today was a good day. If the trend continues, tomorrow should be an even better day - hopeful that the "numbers" will stabilize even more.

Tom and the girls came to visit and I heard all about their shopping trip. It was a huge success. Josie got her black pants and black shoes, and Rissy even walked away with a new pair of shoes. He did good.

Well, we won't be home for Thanksgiving, but Bailey and I have already made plans to watch the entire Macy's Thanksgiving Day Parade on TV. It's been many, many years since I've seen it because I'm usually elbow-deep in baking and cooking, so that will give us something to look forward to. And my family is going to deliver us a Thanksgiving meal, so we'll be well taken care of. Josie and Riss get to spend the day and night with Aunt Vickie.

Thank you for your continued prayers. They are the best that you could give us right now. Have a happy Thanksgiving week and enjoy the short work week!

Love to you all,
Angie

Continued Prayers

Bailey's blood pressure has been all over the place (from the low 50's to the 130's) in the last 24 hours. This morning she hit the low BP and we had doctors and nurse practitioners in here watching. Dr. T came in early this afternoon and put her on nitric. He's having a hard time understanding why yesterday morning her CVP was 10 and in about an hour's time it jumped to the 20's. His explanation is that either this is just post-pump recovery and the nitric will help settle her BP and CVP, or the anesthesia has worn off revealing where her heart really is. He said he would give her a few days on the nitric in the hopes that things will level out and her numbers will look better. One day at a time. Only God knows, and only in God's time.

She didn't sleep at all last night. And I feel completely guilty about that because I had the best sleep I've had in several days. It's a good thing Stacia (our wonderful night nurse) was here to take good care of her and keep her company. This morning she was given adavan so she could get some sleep, but Dr. T thinks that might have contributed to her low BP. So no more sleep medicine until they can figure out what the next few days are going to bring.

It's really hard to keep my eyes off the red and the turquoise numbers on the monitor. On the plus side, her heart rate has been steady at 85. I haven't heard any PVC's, and she typically had several in a minute. And she has been eating solid food today and hasn't been nauseous at all. She weighed in 4 pounds heavier this morning, but Dr. T says as long as she has elevated CVP the fluid will likely return. As I sit here, the monitor just alarmed with a low BP (low 60's). I just wish that all it took was for me to "will" the numbers to where they wanted them to be. Since that's not going to work, I just need to turn my chair around and stare at the wall instead of the monitor. I can't really watch TV because the sound only comes out of the handset attached to Bailey's bed. I could turn it up loud enough to hear it, but that would be blasting Bailey, so I watch TV with no sound. Actually, it's pretty entertaining - especially the Food Channel. Rachel Ray, being the most animated of the personalities, makes me laugh. I have no idea what she's saying and cannot even identify some of the ingredients she uses, but her facial expressions are something else.

Tom and the girls came to visit tonight, and Rissy has lost her first front tooth! And the other one is loose too and hanging crooked. She said the tooth fairy came, but she and daddy had to search for it because her pillow slid off and ended up under her bed. I'm so grateful for and proud of Tom that he can keep our household running and take such good care of Josie and Riss. It's a lot less worry for me to know that the other half of my family is safe and sound. He's taking Josie shopping for black pants and black shoes that she needs for a choir concert coming up pretty soon. He was asking what size she wore, and I said, "Josie can tell you that. Just be sure to go to the Juniors section." He seemed a little out of his element, but I'm sure he'll do fine. Josie had a volleyball game today. She said they lost, but it was a lot closer than the last time they played the red team.

Well, I'll get back to my reading. We'll see what tomorrow brings us.

Angie

Still a Great Day

This afternoon was a little rougher than this morning. Bailey had to suffer through a dressing change . . . and suffer she did. I'm not sure what percentage of it was fear in anticipation and how much of it was actual pain, but it took 1 1/2 hours to get it done. She wouldn't let her nurse take the tape off very quickly, and there was a lot of tape all over her chest and abdomen. She has two drainage tubes hooked up to the inside of her chest. They are about the size of my little finger in diameter, so really quite large considering they're sticking out of her belly. She is SOOOO very fearful of anyone moving those at all, so it made cleaning under and around them quite an ordeal for our wonderful nurse, Juanita.

Bailey's CVP and blood pressure jumped up this afternoon (CVP up to low 30's; and BP was in the 110's and briefly hit 130) and the worst of it was during her dressing change. So not only did we have a 1 1/2 hour ordeal of pain and fear, but we also had Dr. T and 2 or 3 others popping in and out giving instructions to Juanita. It was really quite a tense time. Juanita ended up having to give Bailey some versed to get her through the dressing change.

They have nitric sitting outside the door in case they decide to use that tonight. They did an echo today to see if they could determine the jump in her numbers, and Dr. T said the pressure in the ride side of her heart was higher than yesterday and the function on the left side was lower than yesterday, but he expects it's due to the trauma of the surgery and we're hoping it straightens out in the next 2, 3 or 4 days. He said this morning was just too easy, and this is actually more of what he expected. I don't necessarily think those are calming words, but I guess it helps a bit.

Ah oh. A respiratory therapist just came in to go some lung exercises. Bailey hates these so I have to go hold her hand.

Talk to you all tomorrow,
Angie

A Great Night

Bailey is doing incredible, you guys. Her night nurses were amazed at how well she was doing. In fact, they said they were ready to send her home. Ha!

She has a fat bottom lip - not sure if that's from a reaction to some plasma she was getting (which I doubt, since it's still there) or if it got pinched by anesthesia or cardiology some time during the surgery. Of course, Dr. T says it was anesthesia or cardiology - not the surgery team - that did that.

Bailey was so happy last night. We didn't sleep much. About every 1/2 hour, I'd hear, "Hey mom." It was music to my ears. One time she pointed to the ceiling and wanted to know if there were little black bugs crawling all around. Another time she wanted to know whose boots those were on the table. I said, "What boots, sweetie?" She pointed to the window. From the Berlin Heart ICU days, I learned NOT to disagree with her, so I just said, "I don't know, sweetie." I guess that was good enough for her, because she didn't bring them up again. She kept asking the nurses for something to drink. She got lots of ice chips and a couple cups of water, and finally they said she had to slow down because they didn't want her to get sick. She didn't really appreciate that. She asked her nurse if she could have a "little bit of juice". She said she would have to ask Ashley (who is the nurse practitioner). Bailey pointed to the hallway and said, "She's right there." Erica just laughed and said, "Well, alright. I'll go ask her." Ashley crumbled like a wet rag. She said, "You're not easy to say no to."

They needed to weigh her this morning and were trying to figure out how to weigh her in the bed, but this particular bed doesn't have a built-in scale. Bailey said, "That's ok. I'll just stand on the scales if you bring them in here." I don't think I breathed the entire 10 minutes it took to get her out of bed and standing on the scales. She was orchestrating the whole operation -- telling one nurse not to pull on her chest tubes; telling another nurse not to pull on her central line (that's in her neck); and telling the third nurse how to read the scale (it's one of those old ones that slides). Pretty much all I did was stand there in awe marveling at her mental and physical strength. The incredible news is that she weighed 89 pounds. She was 111 going in to surgery yesterday morning. That's just mind-boggling. Dr. T thinks there's a good chance that it will stay off, too. That's even more mind-boggling since it came right back after the drain procedure a couple weeks ago.

Dr. Bramlet was just in here checking her out. He told me that he was in here yesterday after her surgery when she was first waking up and starting to move around (before we saw her), and he said the first thing she did was reach up to her belly to feel around for a VAD. In the middle of the night, she told me that she was shocked. I said, "What are you shocked about?" "I don't have a VAD." Then she smiled really big and went back to sleep.

Just had to share. I'll catch you again tonight.

Have a great day!
Angie

What a Glorious Day

Bailey is a warrior. Dr. T talked to me yesterday about not knowing how today will go; not knowing until he opens her up what he'll find; don't know if this will work but it's a good shot . . . I have received that identical message before every single surgery that she's had her entire life from either Dr. T or Dr. Brown. It feels like a hard kick in the belly, but it's not anything I didn't already know. Bailey has been on the leading edge for 15 1/2 years. She constantly treads new ground.

Bailey didn't sleep much last night. She woke up at 11:00pm and wanted to hurry up and eat something since she had to stop drinking and eating at midnight. Then she was awake most of the rest of the night. She was so scared this morning, but not panicky or out of control. She was so happy to see Jill, one of her very own personal surgery nurses, and Jill promised her that she would be right by her side the entire way. That gave her the greatest comfort. Sweet little Rissy was quite upset to see Bailey so scared this morning. It was hard for Josie to see Bailey so scared too. We gave each other a great big hug, and that helped get us through the rest of the day.

It was SO GOOD to see Dr. T's expression when he came up to talk to us after surgery today. He was pleased. I'm so happy when he's pleased because so much of me relies on him and Dr. D. Dr. T said that everything went very well, all her pressure numbers were good (not perfect, but good), and he is hopeful that this will hold her "for a while". I'm hopeful that "for a while" means decades. He also wanted to do a lung biopsy to see if her pulmonary hypertension had become a primary issue as opposed to a secondary issue, which it's been since birth. If it has somewhere along the line become a primary issue, that means that a transplant that she might need in the future would likely be a heart and a lung. He didn't get the biopsy done because he didn't want to put her through undue stress, but what he saw in the pressure numbers made him feel pretty confident that she would likely only need a heart . . . if it comes to that.

We were able to see Bailey in ICU at 6:00pm. We walked in her room, and she was already awake (falling in and out of sleep) and still had the tube down her throat (the ventilator). She started pulling on the tube and we said, "No, Bailey, Sweetie, you can't pull on that." Scott said, "T put that in there, Bailey." She looked up at him and formed the shape of an "L" with her index finger and thumb. Ha!! The entire room busted out laughing. I told Dr. T that this was going in the blog! He was quite amused. After checking her out and draining the Foley cath like he likes to do, he turned to walk out. Bailey pointed at him. I said, "Do you want T?" She shook her head yes, so I called out for him. He came back to Bailey's bed, and she mouthed as best she could, "Thank you." I don't know if he kept his composure (he quickly turned and left the room after patting her leg and telling her "you're welcome"), but I know I was seriously struggling and my heart was swelling up with pride. She loves him so much for his talent, for his orneriness, and for his compassion.

She wanted to know about her weight. She heard someone say "47", as in 47 kg, and Scott said, "No, Bails, that's not your weight anymore." I said, "Sweetie, T got about 15 pounds off of you today." She put her hand up to her forehead and started to cry. She hasn't had a pair of jeans on in months. I can't wait for her to wake up and check herself out! I do see her ribs!

Then, she pointed to somewhere in the direction of the foot of her bed and put her hand in a fist and pumped her thumb up and down. Nancy and I looked at each other and couldn't figure out what she was trying to say. About 1/2 later, it just hit me: "Bailey, were you asking about Survivor and Grey's Anatomy?" She shook her head yes! Ha!! We were saying yesterday that she would likely miss our 2 favorite shows and I would have to watch them by myself. She was happy to hear Survivor started in about 1/2 hour. (Although she's been sleeping through them so far.)

They took her off the ventilator at 8:30 tonight, and she's been sleeping like a baby ever since. Her numbers on the monitor are great: heart rate 85, O2 sats 97, art line pressure 88/47, CVP 10, and respiratory rate 15. And her blood gases are great. And God is great.

I'm so happy. All the family is gone for the night and it's just me and Bailey in our room in ICU. The nurse isn't even in here at the moment. And, I don't feel lonely tonight. It was wonderful to be with my family and friends today -- it felt like the Thanksgiving gathering that Bailey and I will likely miss next week. (But we've been promised that plates full of food will be delivered to us. Yum!) And I knew in my heart that all you guys were right there with us too. I can't even begin to properly convey the amount of encouragement and love that you have showered us with in these tough, tough times. I, personally, am forever grateful to each one of you. God is definitely carrying me through all this and you guys are crowded in on each side of us cheering me on. You guys are all wonderful!!

I pray that we have a night as incredible as our day has been, and a day tomorrow full of light, laughter, and hope.

Thank you for hanging in there with us,
Angie

My, Oh My

Gotta make this quick, because we'll be called down to ICU any minute:

This is the best possible scenario that could have been. They repaired/replaced 2 leaky valves in Bailey's heart and did the Maze procedure which is intended to keep her heart in rhythm. The best part is that no VAD was used. The night is still early, and it's kind of scary to be so happy . . . but we're happy.

They also took of 7 litres of fluid from her belly. She now has ribs! We haven't seen her ribs in nearly a year. I can't wait for her to wake up so I can tell her she's skinny and she doesn't have a VAD.

Dr. T said she may or may not be woken up and taken off the ventilator tonight, but her pressures all look really good and he was happy. Dr. D was happy too. Everybody's happy. God is happy.

Love you all!
Angie

Surgery Tomorrow (Thurs.)

Woke up this morning to find Bailey still in rhythm. Yeah! Then Dr. T came by to tell us that surgery is scheduled for tomorrow - instead of Fri. or Mon. - due to the slim crew because of the Thanksgiving holiday. Lots of his crew is leaving town but a few of them are rearranging their holiday schedule so they can be sure and be here for Bailey's surgery. That gives you an idea of the wonderful people who work here. I am deeply grateful for their sacrifices they make to be here with us.

Wow. Surgery tomorrow. That's in the morning. That's like we go to bed tonight and wake up in the morning to go to surgery. Wow. I know it's only one day sooner than we expected, but when he said "tomorrow" it was like jumping in to an ice-cold pool of water. And ever since that moment, it seems to be harder and harder to take a breath. My heart even fluttered around a little bit about an hour ago. It took my breath away for a second. I've just been walking around here all day thinking that with every minute that goes by, we're one minute closer to the morning.

Lots of people stopped in today to wish Bailey well tomorrow. There are certainly a lot of people around here who love Bailey. She even received a bouquet of balloons today from Berlin Heart. How cool is that? Dr. T said, "Gee, Bailey, it's too bad you don't have very many friends." Well-wishes from half-way around the world brought a smile to her face today. Thank you, Berlin Heart! We love each and every one of you and think of you often only to realize how blessed we are to have met you.

They're working hard to get Bailey's blood thinner reversed in time for surgery in the morning. She's receiving fresh frozen plasma again. She had a reaction to one of the units she received a few weeks ago, but so far so good. She can't be pre-treated with benedryl because it causes her heart to race, but they have it here in our room in case she begins to show signs of a reaction so they can get it to her quickly. Her INR is almost where it needs to be.

Bailey's sleeping soundly. She didn't sleep much at all last night and didn't take any naps today, so I'm hoping she'll sleep through the night. She asked her dad to bring her crab legs from Joe's Crab Shack for dinner tonight. She enjoyed that! Then she laid back in her bed with her fingers intertwined and resting across the top of her big belly and fell right to sleep.

I guess that's it for now. I don't really feel like "hanging up" right now. The family has gone for the evening and I'm sitting here all by myself. A little lonely really. I feel like if I just keep typing and typing and rambling on and on that I won't be by myself -- I'll be with you guys out there in blogger world. But I guess I really don't have anything else to say, so I'll go for now. I'm a big girl - I can handle a little loneliness.

Now, where's my phone? Who can I call? . . . . . . Ha!

Love you all! Thank you from the bottom of our hearts for all the good thoughts and prayers. I can actually see them flying around in this room.

Angie

What a Network of Support

You guys are the best! Thank you so much for all your words of support, well wishes, and just plain love. You guys are amazing. You have no idea what it means to us to know that you are all in this with us. You guys have mown our grass, brought meals to the other half of my family, brought us meals here at the hospital, send Bailey part of your Halloween candy and one of your very own little stuffed animals, think about us every day, and pray for us every moment of every day. What more could we need? Thank you all so much. We appreciate each and every one of you . . . even those of you we don't know and may never meet. You all have a very special place in our hearts.

Bailey's cardioversion went well today. It only took one try, and they were also able to get her PIC line in while she was under anesthesia. That is a big deal to us - Bailey gets so stressed out for those since she had a really bad experience with one back in the Berlin Heart days resulting in temporary injury to her left arm. We so appreciate the special arrangements they made to get that coordinated with the cardioversion. Since after the last cardioversion (Friday) she was only in sinus rhythm for 45 minutes, I've been holding my breath all day and trying to keep from staring at the green number on the heart monitor. Our resident came in just a few minutes ago (she normally doesn't come in this late at night) and I had the urge to run and brace the door and not let her in because I just had a feeling the words coming out of her mouth were going to be, "Bailey, you're in flutter." But I thought better of it since I was sitting with Bailey on her bed at the time and any number of her IV lines could have gotten tangled around one of my appendages . . . and that would not have been good. But she didn't have any bad news to give us anyway - she was just checking in. She said herself that she was trying not to stare are the monitor all night. Ha! I'm not the only one holding my breath.

She's been pretty tired today and a pretty good cough (still not sure if from a cold or from heart failure) and lots of bloody noses. They're not giving her a blood thinner anymore for now in hopes that her blood will thicken in time for a surgery on Friday or Monday. Still not sure when it will be. I don't think Dr. T likes Friday because of a lighter weekend crew but don't know if they want to wait for Monday. We'll see. We're just hoping she stays in rhythm until then.

I came back from dropping Bailey off at her procedure this morning and Tom and I just glanced up to the noon news to see "Adams Elementary Evacuated" and then they moved to the next story. Well, that's Marissa's school! We were on the verge of getting all panicky -- you know, you guys say how strong I am but I think that would have probably been my limit if something bad would have happened at school -- and Tom made some calls and found out that it was just a paint fumes issue. The kids were taken to the high school for the day where they would be picked up and taken home at their normal time, or the parents were invited to pick them up if they wished. When they came to visit tonight, Riss said, "Mommy, we had an unscheduled field trip today!" Haha! She was cute - they had a lot of fun playing and watching movies at the high school. I just thank God it was nothing more than paint fumes.

Mom brought by a printout of an inspirational e-mail today and I found exactly what I needed in the small print at the end: "Instead of telling God how big your storm is, tell the storm how big your God is." Ahhh, that's exactly what I needed to hear today.

Good night.
Angie

The Plan

Well, Dr. D came in this morning and drew out a plan for the week. He's cardioverting tomorrow and hoping Bailey can stay in sinus rhythm for a few days to get some fluid off and as good a shape as possible so she can have surgery at the end of the week. If she goes right back into flutter tomorrow, the surgery will likely happen before Friday, because she is only getting sicker when she's in flutter. She's been gaining 2 pounds a day these past few days while in flutter. Dr. D and Dr. T have been in and out throughout the day checking on her and asking for any questions she might have thought of. It's quite obvious no one here wants to see her go through all this again, but they've come to the conclusion that it's necessary to get her to feel better. So, we're facing the exact same scenario that we faced nearly 3 years ago: a repair surgery which may or may not result in a VAD which may or may not result in a transplant. The repair surgery will include repairing or replacing 3 of her 4 valves and a Maze procedure which will scar up the inside of her heart so that the electric current can only follow a certain path which will keep her from going into flutter. It may also involve removing from scar tissue from the inside of her left ventricle left there by the Berlin Heart cannulas. If they have problems getting her off the by-pass machine, Dr. T will put in a VAD (ventricular assist device) that will assist her heart in pumping her blood throughout her body. Her kidneys will work better and hopefully the fluid will disappear. Am I rambling? I still feel like I'm trying to let this all sink in.

Bailey is doing ok with all this. Last Friday she didn't want to talk about it, but she started asking questions over the weekend and continued with her questions today and it must be making her feel better because she's more alert and awake and more like Bailey than she has been in 5 days. She's scared, that's for sure. I'm scared, that's for sure. But with God and the doctors here at Riley on our side, we are prayerfully hopeful that Bailey will be feeling better soon.

Dr. D came up this afternoon and caught me out in the hallway. He just looked sad and dejected and said, "So, does Bailey just really not want to see me?" I felt like I needed to give him a great big hug. He's so sweet. I just love everybody here. We feel so safe here and know we are in the best of hands. But that doesn't mean this is going to be easy. It's going to be awful. I'm going to miss Bailey while she's asleep for days. Those days and nights in ICU are going to be long and lonely. But we're going to do what we need to do. I just want Bailey to feel better.

Looks like we'll be here for Thanksgiving and maybe even Christmas. That's ok. We're right where we need to be.

Love you all,
Angie

Another Day of Rest

Bailey coughed a lot last night. They're trying to determine whether it is a cold or a symptom of heart failure. She slept a lot again today, but was awake more than she has been in 3 days. She even played a half of a game of Yahtzee. She ate a little bit today and kept it all down. In fact, she wasn't nauseous - for the 2nd day in a row. That's exciting. Dr. T wanted her to sit in a wheelchair and get out of her room for a little bit today, but she really had no interest in that. So, she's still not herself, but was at least awake for 4 hours or so this evening.

Rissy and Jos came for a slumber party last night and to spend the day with us today. It was so nice to have them here with me. Bailey was pretty much out of it, but I got to spend some time with them, and Rissy has decided to spend another night with us. They don't have school tomorrow, so that works our great for me! She and I both fit perfectly on this little bench.

Well, part of me is hoping for some decisions to be made tomorrow by Bailey's team, but the other part of me is afraid of those decisions. It's a really tough time right now. I just want Bailey to feel better, and those decisions are meant to do just that.

Hope you all had a great weekend and have a great week ahead.

I'll keep in touch.

Angie

A Day of Rest

Today was an ok day for Bailey. She's still really really tired and slept most of the day -- and she's not on any drugs to knock her out. That's concerning to me, but the doctors say it's probably a combination of built-up sleep deprivation and maybe some depression. But the good news is that she hasn't been nauseous today, but she still isn't eating much. She's really not awake long enough to eat much. Her peeing has slowed down a bit and she has gained 2 pounds each of the past 2 mornings. Dr. T gave her the option of going back to ICU on nitric and seeing if that made her feel better -- since last time they put her on it she made an immediate improvement. She really doesn't want to go back to ICU, but she's considering it just to see if it will make her feel better. Dr. T also came in today to answer some questions she had about the VAD that he might need to use. Her biggest fear is that we could go home on it, but he assured her that, IF she has to have one, by the time they get it in and she recovers from surgery, she would be ready to go home. And, also, he wouldn't let her go home with it until she was comfortable with it. He made her feel much better. Saying that we're "ready" for the next step might be pushing it a bit, but I think Bailey's to the point where she's really tired of being sick. It's a scary thought, what our future might hold. We just keep praying.

Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths straight.
Proverbs 3:5-6

Good night.
Angie

Cardioversion #25

Cardioversion went well this morning -- very quick and only took one try. However, she went into flutter 45 minutes later. That was a disappointment. They decided not to do anything over the weekend and just let Bailey rest and see if she can get to feeling better. She's still nauseous and very, very tired. I think the tiredness is from a drug, adavan, that is a relaxer. But it really drugs her up good. I was worried today that the exhaustion might not be from the adavan and maybe more due to ill-health and depression, and that was very worrisome. I tell ya, it's very difficult to handle this when she feels so bad - when she wants to wake up and cries because she can't - when she sits up and grabs her puke bucket and hovers over it with her eyes shut, swerving back and forth trying to keep from falling asleep - when she looks at me and says she's scared - when she can't stay awake long enough to entertain me.

Dr. T came in today and said he's talking with Dr. D about an open heart surgery to repair 3 of her 4 leaky valves. He covered all scenarios including another VAD (not the Berlin this time, since she's grown big enough for the American version) and possibly bridge to transplant. We have been aware of the possibilities for a few months now, but hearing it again and knowing that if they can't get her in sinus rhythm it could happen sooner rather than later weighs quite heavy on our hearts. Bailey didn't want to talk much with Dr. T today about what she might have to be going through here before too long, but she has now decided she wants to hear more about the VAD he might use and ask other questions. The VAD he's thinking of using is one that is implantable and she could go home with. But going home with it scares her - she wants to be right here at the hospital safe and sound in the midst of her medical team. He's coming to talk to her tomorrow and hopefully he can help calm her fears a little bit. She's been so sick lately that I think she's at the point where she'd like to do whatever can be done to make her feel better even if it involves another surgery and VAD.

This is pretty scary going into this again. Having been there once, I just hope and pray that this next time around is as successful as the first time. Please continue to pray for Bailey.

Thank you,
Angie

On the Heart Center

Cardioversion #24 went well this morning - only took 2 tries - and the scope found evidence in her asophagus of stress and anxiety, so they went up on her nexium. Hopefully that will help her nausea. Bailey's been out of it all day. They gave her adavan early this morning as a relaxer so she could get some sleep, since nausea has been making that difficult lately, and that drug just knocks her out for the day. In fact, she didn't even know she got cardioverted. She woke up and said, "Did I get cardioverted?" She was pretty nauseous still when she'd wake up for a few minutes at a time today. We came up to the heart center about 1:30 and Dr. D came in at 5:00 with the news that she was in flutter again. Agh!! She's waking up a bit more tonight and even ate 2/3 of a banana and 1/4 of a roast beef sandwich. And they stayed down. She watched Survivor and Grey's Anatomy with me tonight - well, she tried to watch it with me. Her eyes kept rolling back in her head and she kept saying, "I'm sorry, Mom. I'm trying to stay awake." Ha! She's so sweet. They increased her nausea medication and doubled her nexium, so I'm hopeful for a very good day tomorrow, even though cardioversion #25 is in the works.

Got to see the girls tonight. Rissy was quite emotional. I saw on the news that there's a child abductor haunting our surrounding neighborhoods at home and Josie and Riss were telling me all about it, and we talked about how to stay safe at home. Between that and our family being split apart right now, Riss just couldn't stop crying tonight. She wanted to spend the night with us tonight. We made plans for her to spend Saturday night with us. She wants us home so badly. Josie's doing pretty good. She's doing great in school and made a choir ensemble, so she's starting to work on that. She's enjoying as much time as she can with her friends right now. When we're all home, I make sure we all spend a lot of time at home as a family, but since we're split apart right now, I think it helps her to spend time with her friends. I hope that's the right decision anyway. It's tough to know at times. I just pray that we all come through this and continue to be a tight-knit family.

Hoping for a good day tomorrow for us and for you,

Angie

Off the Nitric . . .

. . . but in flutter. They took Bailey off the nitric today around 12:30. She's done fine so far, but has been quite nauseous all day. When they do the cardioversion tomorrow, they are going to scope to see if they can find an ulcer or anything that might be contributing to or causing her nausea. She's apparently been going in and out of flutter for 2 days now, but is pretty much in flutter now.

We're still in ICU. Dr. D has put a request in for a bed on the heart center but, unfortunately, they're full right now. We're hoping they send someone home tomorrow so we can squeeze in. Prayerfully, Bailey will continue to do well off the nitric. And, good news, she's lost 4 pounds in 2 days. They don't weigh down here every day like they do on the heart center, so we weren't sure where her weight was. But they weighed her this afternoon and found good news! Yeah!! She's so excited about that. We're hoping the thyroid medication they started her on about 5 days ago is helping also. Maybe we're at a turn for the better. We just keep praying and seeing what the days bring us. Bailey's hoping to be home by Thanksgiving. That would certainly be nice, but we'll do what we need to do.

Hope all is well with everyone out there. We're enjoying the country music awards (CMAs) tonight. Hoping to catch a glimpse of our good friend Mimi!

Good night.
Angie

. . . and Still Hanging Out in ICU

We're down to 1 on the nitric - maybe off tomorrow and then up to the heart center? We'll see. Dr. D did an echo today. Don't know the results of that yet - I'm sure we'll hear something tomorrow. We've had a full day of Yahtzee and a new game called Shake. It consists of a bunch of dice to roll (even more than Yahtzee) - we had to stop playing that game because every time Bailey would roll, it would show up on the monitor as V-tach. Oops! Our nurse kept coming in the room, "Are you rolling again?" Hee-hee! We thought we'd give her a break and move on to Mancala.

Nausea hit pretty hard this evening. I hate it when she feels so sick. I just want to take it away from her. She's feeling better at the moment. Hopefully she can sleep well tonight. We had a little baby move in next door to us last night, and these rooms are not nearly as sound proof as the rooms in the heart center. We both woke up to lots of crying last night. That's a little hard to take -- not only do we lose some sleep but it's so sad to hear a baby crying out, I'm sure, in some kind of pain, discomfort or fear. You just want to run to it and try to comfort it. And we heard that things have been pretty busy at the other end of the hallway (that we can't see or hear, thankfully). That always gives you a stomach ache, too, to see lots of medical people scurrying in and out of a room. Lots of kids to pray for around here. I'm just glad we're not one of the rooms needing immediate attention. Lots of things to be grateful for here too.

And I woke up at 6am this morning to Bailey's heart monitor sounding strange. Our nurse, Stacia (she's wonderful, by the way), was popping in and out silencing the monitor and taking printouts of the rhythm. Bailey's pacemaker is set at a low rate of 85, and the rate on the monitor was dropping into the 70's. So I was really confused as to what exactly was going on -- you know what it's like when you're not fully awake, things are a little confused and distorted. I wanted to get up and ask Stacia what was going on, but by the time I would have climbed out of the recliner I would have woken Bailey up, so I just pulled my sleeping bag up over my head and tried to think about the tropics. There is a time and place for denial - it's not always a bad thing. Ha! I found out later in the day that her heart was definitely doing something, but it wasn't flutter or anything that they needed to be alarmed about. So, that's good. And tonight it was doing some funky things and Chrissy (another one of our wonderful people) called Dr. D and Dr. T and they weren't too concerned about this one either. Who knows, she might do things like this at home all the time. Never a dull moment here.

Dr. T came in today to check on Bailey. They were yipping and yapping back and forth and it was his turn to fire back, and he just started laughing! He said he thought of a great comeback but he couldn't say it. So he just stood there at our door and laughed at us. He wouldn't even let us in on it. So Bailey fired a few pieces of candy (Dots) at him, and he took off.

Well, time for bed. We might try to squeeze in a quick game of Yahtzee first though. Bailey's been beating me very badly. We've played 12 games, and I've won 2. Pathetic really. She's even starting to feel sorry for me. That's the strategy all along -- to get her sympathy and then move in for the kill! Nah. Just being stupid. They say that ICU psychosis is a real thing. They might be right.

Good night everybody!

Angie

Another Day in ICU

Still hanging out in ICU. Nitric is down to 2. They're going slow and steady on the wean. Bailey's been nauseous again today - it comes and goes. She is able to eat and keep food down, but it's a matter of timing.

We had a little fun with Dr. T today. Our nurse rigged up a fake foley bag. It was a group effort to tease him a bit. He was a good sport, as always. He was out of town for a long weekend - we're glad to have him back. We like it when "our people" are in town.

Glad to give another short report - that just means things are stable.

Hope everyone out there is well.

Angie

A Restful Day

Today was restful. Still in ICU - nitric is down to 3. Maybe the heart center tomorrow. Bailey's had some nausea today - still peeing.

Not much more to report. That's not a bad thing.

Good night.

Angie

Another Good Day

Weaning very slowly on the nitric oxide - we're down to 5. Slow and steady is always good. We're in no hurry to get out of ICU. We have very good nurses and they are very considerate of our needs. There are a few inconveniences such as not being able to use my cell phone and having to leave the room to take a shower, but that's working out all right. I was able to leave Bailey with Jenny this morning and afternoon while Vickie picked me up to go get Josie and Marissa and go to Josie's volleyball game at the YMCA in Greenwood. That was such a nice and relaxing time. I knew Bailey was in very good hands with Jenny, so that put my mind at ease enough to enjoy the time away. Josie had a great time playing volleyball. She lost to the first team, but won against the second team. They each played 3 games for a total of 6 games. Between the 5th and 6th games, Marissa just looks straight ahead with slumped shoulders and such a hopelessness to her voice and says, "This is never gonna end." Ha! She's so funny. She was just wanting to make us laugh. Vickie and the girls then dropped me back off at the hospital and they all went out to Vickie's house to spend the night. They'll have fun out there. They love visiting Uncle Giff and their cousins Christian and Cody.

Bailey and I are having a laid-back evening. I'm reading a bood I found in the gift shop and she was checking he e-mail on the laptop and watching the Disney channel. She's now requesting some food, so I must go. A restful and medically-noneventful day -- a good day.

Have a great rest of the weekend!

Angie

A Peaceful Day

We had a good day today. Bailey's feeling good and we laughed a lot today. We got here to ICU at 11:30 last night - they were delayed moving us down here because of a code. I don't like codes here - they're scary and sad. I just thank God every minute that it isn't us. We are in a much better room than last weekend. Last weekend we were right inside the double doors. This time, we are down the hall and around the corner. It's much quieter and darker at night. It is very pleasant down here. They've started weaning Bailey off of the nitric oxide. She was at 10 - now she's at 6 - and she's doing very well. A slow, steady wean is what we're praying for.

It was pretty funny last night after we got down here. I was nestling around in my recliner trying to get comfy and, after laying there facing the dark black window for a while with my nose about 6 inches from the glass, I was just starting to doze off when I heard something that sounded like someone tapping on the window. Gee whiz!! I always try to calm Bailey's nerves here at the hospital -- you know, that's what moms do -- and I tell ya, I contributed to her nerves at that moment. Her eyes got really big and she patted her bed, scooted over, and said, "Well, come over here and lay with me!" She's so sweet, and we both laughed. Then we talked through it and ended up seriously doubting that someone was tapping on our second-story window. After we both calmed down, we both slept really well.

Some really good friends of our visited today and delivered to Bailey a football autographed by Jeff Saturday. How cool is that?! She's been showing everyone who enters the room. I told her I was going to sleep with it in my recliner. I believe her response was, "Na-ah!"

When the doctors were coming around for rounds this morning, our curtain to our room and the sliding glass door were both closed, but we could see several shadows of people through the curtain, and one of them looked like they were leaning on the sliding door. We figured it was the group of doctors rounding, and Bailey says with a great big ornery smile, "Hey, Mom! We oughta slide the door open really fast and see who falls through the curtain!" We just sat there and laughed and watched the curtain, and pretty soon Dr. Ebenroth walks through the door. We had to explain why we were cracking up laughing. He laughed right along with us.

No anxiety issues today like Bailey had last night. Hopefully those won't return, but we mentioned it to Dr. Darragh, and he just said something like, "Well, duh!" She's an incredibly strong young lady. I know I've written about that before, but it really is true.

I get to go see Josie play volleyball tomorrow. I'm so excited about that! Jenny is going to come sit with Bailey while I'm gone. That puts my mind at ease - she'll be in very good hands.

Well, rest well, everyone. We'll try to do the same.

Angie

Cardioversion #23

Bailey woke up to get weighed in at 3 pounds lighter. That was pretty exciting! She had a really good restful night (and so did I) and they took her for cardioversion around 11am. While they had her under, a urologist came and scoped her to see if they could find any reason why she had blood in her urine (that came back last night when they started the heprin drip because of her flutter). They found trauma from the foley cath they placed last Friday in her drain procedure and an ulcer-like area that was actively bleeding. They cauderized that and no more bleeding . . . however, she was in severe pain the first 3 times she peed after the procedure today -- crying and shaking and sweating. It is still painful to pee, but nothing like the first 3 times. And the cardioversion took 5 times before they could get her in rhythm, so she's starting to feel the muscle soreness associated with that. After today's procedure, Dr. D told us to not be surprised if we get taken back to ICU because of the nitric. It is outside of hospital procedure to have nitric on the heart center, and someone in the powers-that-be is insisting she go back to ICU. So, we've packed all our stuff again, and are waiting on the crowd of medical staff to whisk us away and down 2 floors. It's a little bit of disappointment, but we're both in a much better mental state than we were 2 or 3 days ago so it won't be so bad. And, Dr. D said he hopes we'll only be down there a day or 2 until he can get her weaned off the nitric. They haven't come for us yet and we were told they'd be here around 7:30 or 8:00. We just decided that I'm going to climb in bed with Bailey and we're going to pile all our luggage at our feet, and when they come to get us, assuming it will be the middle of the night, we won't even have to wake up for it. Ha!

I think Bailey's having anxiety issues. Goodness knows she has enough reasons to be anxious. She had a few moments of gasping for air and "not feeling herself" tonight. All her "numbers" on the monitor looked good and they took some blood to look at those numbers, and everything was fine. I think the recurrent ICU issue may have contributed. And everything she's been through physically today, it's no wonder. I think the typical person would have had anxiety issues a long, long time ago. We'll talk to Dr. D tomorrow, of course, to see if we need to do something about that. Hopefully the ICU stay will be short, easy, and uneventful.

Have a good night, everyone.

Angie