Tuesday, May 31, 2005

Radiothon June 2, 3, 4

Bailey's had a great day today! So much energy - I don't know where it came from - probably just glad to be feeling good again. She got a lot of schoolwork done today. I think the teacher was here 2 or 3 hours working with her on math. Her teacher, Michelle, is so nice. This is her last scheduled week to work at the hospital before summer break, but she said she'd come in on a volunteer basis to get Bailey through her math if they didn't get it done this week. I was a little worried last week about getting it done - she didn't have school at all on Thursday or Friday because she didn't feel very good at all. But she made up for all that today!

Bailey had Dr. T shaking his head in disgust yesterday. He walked in the room and she hadn't taken her medicine yet and the nurse pointed it out. So, she grabbed the syringe (with the little blue cap on the end), bit off the little blue cap, spit the cap out on her bed with great force, and downed her medication. He then pointed out that I am going to have so much "deprogramming" to do once we get home - and I have absolutely no doubt that that is the case. He walked in a few days ago to discover a cup full of empty syringes with little blue caps, and written on the side was "Bailey's Weapons". She demonstrated to him that she pulls the inside of the syringe out as far as it will go without falling out, places the little blue cap on the end of the syringe, and shoots the cap across the room. She likes to shoot them at people - namely, Dr. T. I don't worry so much when he walks in wearing his glasses, but when he doesn't have anything to protect his eyes, I'm in great fear that his career will suddenly come to an end when she impales one of his eyes with one of those little blue caps. [I was looking at myself in the mirror this morning, and I noticed that I suddenly have lots of grey hair. Hm.]

For all you Indy people out there, you'll have to tune in to 95.5 WFMS this Thursday, Friday and Saturday. They're doing a radiothon for Riley Hospital in the atrium. Mimi is going to interview Bailey at some point (I think Thursday late afternoon or evening) and she mentioned something about using some excerpts from this blog page. We were on the phone today talking about the telethon and her husband (Jim Denny) was in the background telling her to tell me that he would see me in the atrium Thursday morning at 5:00 a.m. for the morning show! I'll be there, Jim!!! - - give or take 4 or 5 hours.

Bailey had some Miss America contestants visit her yesterday -- Miss Texas, Miss Nevada, and Miss Pennsylania. They were very pretty, of course, and very nice. Gave Bailey a makeover with bright pink lipstick [Dr. T popped in later and said, "Boy, that Berlin Heart is really pinking your lips up, huh!"], and they painted Josie and Marissa's nails. They each got their own little tiara to wear. They had a good time with that.

Our pigeon came to greet us outside our window today. He was so cute, but his beady little red eyes still spook me a bit. I bought a $10-pair of binoculars last week in the gift shop just so we can spy on him! We named him Perry - short for Peregrin Falcon, which is what we really wish he was because that would make for much more excitement, but we go with what we have.

They're starting "room service" tomorrow here at the hospital. Instead of the hospital trays, Bailey gets to order from a really nice menu any time of day (except the nighttime hours - looks like we'll still have to order midnight pizza on our own). We'll really excited for this - especially the part about breakfast being available any time of the day. This could potentially solve our only two complaints - lack of variety (well . . . and quality), and the cafeteria not being open long enough (not at all on weekends). We'll let you know how it works! But we'll give them a while to work out the bugs first.

Hope all is well at R&L, I miss you guys! Hope all is well at First Christian Church of Shelbyville - we miss you guys!

See you soon,

Monday, May 30, 2005

Memorial Day

Happy Memorial Day, everybody! It was a beautiful day here in Indy. Bailey's feeling much, much better now that they stopped giving her the prostecyclin. Josie and Marissa spent the day with us today, and the girls had a great time playing together and making crafts.

We woke up this morning with a sign on Bailey's door that said to wear a mask upon entering the room. That always means her white count is down again. So, we're in isolation. Hopefully it won't last too long. Even though the masks are to protect Bailey, I think it makes her feel more like she has "cooties" and everyone needs to protect themselves from her when entering the room. She's always disappointed to see her nurse walk into the room in the morning wearing a mask. But we had a good day -- made some jewelry, worked on our second afghan, etc. Colin and his dad and friend, Brandon, visited again today. It's always nice to see them. They give us so much encouragement and, having to live with major medical conditions themselves (Colin a transplant, and Brandon a spinal cord injury), we have so much in common with them. It's very strange, though, because we feel like we've known them forever. Colin and Brandon act more like Bailey's brothers than friends - and they pick on each other like siblings do. His dad, Lance, and I just enjoy sitting back and watching the three of them form an everlasting bond. And Lance and I share our own bond - it's nice to have someone to talk to who has been where we are and knows exactly what to say to help get us through the day. God has truly blessed us by orchestrating our paths to cross.

Thank you for all your prayers out there! Our day will come.

Love, Angie

Sunday, May 29, 2005

Feeling Much Better

Oh, what a stressful few days. Thankfully, after checking in on Bailey yesterday, Dr. T gave the orders to wean her off the prostacyclin, the drug that was making her so sick. They couldn't just stop it, because that would have caused more problems, so they began weaning yesterday afternoon and just finished this evening at 8:00. So, she's officially off the drug. Yeah!!! That was nasty stuff. She was vomiting and had diarrhea so badly. I felt so bad for her. That's the worst I've felt emotionally in a long time. They thought they were going to have to put an NG tube in her nose to get her medication in her, but she figured out that if she took it immediately after she vomited, it would stay down. Those 2 pieces of toast I reported on Friday evening (when I was hoping she was getting used to the drug) was the only food she'd eaten in 48 hours. So far, she's only lost 2 pounds in the ordeal though. She didn't want me to leave her yesterday morning, but I had to. We didn't get much sleep at all Friday night, and I was beginning to feel the stress. I left with a headache that just kept getting worse by the minute. So I went home and took a nap. Much better now. There's still no word as to whether the medication had any effect on her lung pressures. They did an echo yesterday morning and this morning, but it was done by a technician and they, of course, can't tell the patient the results. At this point, we're just glad to be off the medication.

Did you all enjoy the race today? Danica almost did it, didn't she?! We were rooting for Jeff Bucknum, since he's the one who took Marissa's birdhouse home that she painted, but had a great time listening to the race anyway. I wanted to get to the hospital today before the race was over so I wouldn't run into any traffic, so we left the house at 2:30. We were sitting in the hospital garage listening on the radio, and only decided to make a run for it to Bailey's room when the yellow came out with about 15 or so laps to go. What an exciting race. That was fun.

Dr. T went to the race today and it must have really worn him out, because he hasn't come in to visit us today. Don't worry about us!

I'm sitting in here in the kitchen typing this update, and Bailey just sneaked up on me waving her arm in the air - the one she just got unhooked from the "sick" medicine. She's so excited! It's the first walk she's taken since Thursday when she got her second PIC line in. She's looking over my shoulder right now, and says "hi" to everyone.

Marissa and Josie are spending the night with us tonight. The girls have played hair salon, X-Box, Trouble, needlepoint, hook rug, and just about anything else you can think of. When I just left the room, they were reading and Marissa was sacked out in my bed.

Time to go. Bailey wants to use the computer to check her e-mails. Hope you all had a great weekend, and have a wonderful holiday tomorrow! I imagine you'll all be cooking out. Have fun!

Love to all,
Angie (and Bailey)

Saturday, May 28, 2005

Patrick Dempsey a/k/a "Dr. Sheperd" (from Gray's Anatomy) visits Bailey . . . Posted by Hello

. . . Can you believe it?! Posted by Hello

Truly a sweetheart. Posted by Hello

Bailey serenades Patrick Dempsey. Posted by Hello

Who wouldn't want to be Bailey?! Posted by Hello

(L-R:) Nancy (Bailey's step-mom), Bailey and me with Patrick Dempsey. Posted by Hello

Dr. Turrentine and "Dr. Sheperd". Posted by Hello

Friday, May 27, 2005

Patrick Dempsey Visits

First of all, Bailey's day started out rough. They started the new medication at 7:00 this morning; did an echo at 10:00; increased the medication; and did another echo later in the day. It's making her sick. She was vomiting this morning and had a pounding headache all day. They say her body should get used to the medication and the symptoms will wear off. I'm hoping it's already happening because she just ate a piece of toast and that's the first she's had to eat all day. She slept a lot today, too. What better thing is there to do than sleep when you don't feel good?

Late this morning, I received a call from my niece, Mallery. She was so excited to tell me that her dad, Brian, my brother-in-law, called to tell her he was sitting across from Patrick Dempsey at the track in the suites. Brian introduced himself to him as Bailey's uncle. He knew right away who he was talking about. Then! She said she and Debbie, my sister, got to talk to him on the phone. It's my understanding that Mallery nearly hyperventilated and couldn't even speak - that's when she handed the phone to Debbie. He told Brian that he was going to come by and meet Bailey tonight after the track closed. So, Mallery called us to let us know for sure when he was coming. Isn't that amazing? On the busiest day at the track, my brother-in-law runs in to Patrick Dempsey. So, we begin to tell everyone here at the hospital that he'll be here tonight. But then . . .

Dr. T calls me on a nurse's phone in the hallway around 1:00. He said Patrick isn't coming tonight, he's coming at 3:30 this afternoon. Dr. T has been scheming all along to trick Bailey. (Isn't he ornery?!) Anyway, Dr. T said the camera guys are going to come by and we are to tell Bailey that they are going to film a field trip on the train before Patrick gets here tonight. As she's interviewing with the camera guys, the plan is for Dr. T to bust in the door and tell her to hurry up, we don't have all day, etc., etc., etc., and Patrick Dempsey is going to be following him in (like any other resident does) in complete doctor garb, and he's going to see how long it takes for Bailey to notice who it is. I was a little concerned that it might not work too well since she's feeling sick, but we decide to go for it anyway. So, I tell Bailey the "scoop".

So, 3:00 or so rolls around and Brian (from the camera team) comes in Bailey's room and takes me in the hallway. He says, "He's here. You wanna come meet him?" So, we turn the corner down a hallway, and there's Patrick Dempsey standing at the end of it. He was such a nice guy, and in on the secret, and ready to pull one over on Bailey. So, he starts getting dressed in scrubs, surgery hat, etc., and I go back to Bailey's room so I won't look too suspicious. Boy! It reminded me of trying to keep the Pacer's game a secret! It was tough!! And it was tough not to smile the whole time too!!

The camera crew comes in about 10 minutes later to film "the field trip" but they want an interview first, so they interview Bailey about what's been happening this month of May while they've been at the track. After 10 minutes or so of interview, here comes Dr. T. He busts through the door, "Come on! Let's go! We don't have all day! Let's take a field trip!" [Patrick following him in and quickly turns to the other side of Bailey's bed and has his back turned to her - he happens to be staring at all the pictures she printed off the internet of him from his past movies.] Bailey yips at Dr. T, "I can't go anywhere now!" He yips back, "Why not?" "Because I'm hooked up to that thing!", as she points to her new IV medication - all in a not-too-happy-with-you tone. They bicker for a minute, and then Patrick points to the pictures - still with his back to her - and says, "Who's that?" She turns around and says, "Patrick Dempsey", in a you-idiot-who-do-you-think type of tone. Then he turns around and takes off his mask. I was so excited! I was squeezing Brian's arm and jumping up and down like a true Hoosier! It hits her who he is, and she turns around to me and Dr. T with a huge smile on her red face and says, "You guys are mean!" So, we all have a GREAT laugh over that, and the cameras get them talking together about the Berlin Heart, and she plays him a song on the piano [while he sits on her bedside toilet as a chair!]. Then, after a little while, the cameras leave to give us some time to talk with him alone. He's such a nice guy. He seemed genuinely excited to meet us and Bailey. We talked a bit about his show, "Gray's Anatomy", and about the documentary and how excited he is to be involved in it. Before he left, he laid in Bailey's bed next to her so I could take their picture together. Then Brian told me and Nancy to "hop in" beside them, so we HAD to get our picture taken with him too! He autographed a picture for Bailey, and said he'd be back to visit again before he left town. Then he went off to talk to Dr. T for a while and give an interview with those two together. Dr. T later said that Patrick seemed genuinely excited to be here. And Dr. T was SO proud of himself - as he should be - for pulling it off. He did a great job. Anything he can do to mess with Bailey, he's willing to try it. Haha!! I got lots of good pictures of his visit and will try to post them this weekend.

I'm going to try to go home in the morning and return Sunday, like usual, unless Bailey has a hard time throughout the night with this new medication, but I'm hopeful she's alreading starting to adjust to it. After the second echo, they decided to keep her on the medication at least over the weekend and continue with daily echos to see how her pressures are doing. Ironically, the second echo they took today was immediately after Patrick's visit, and her cardiologist said her pressures were even higher than they were in the morning. Hopefully it was just Patrick-induced and will be better tomorrow.

I'm sorry, Robin, Brittany and Lindsey, for the chaos today. But at least you got to see Patrick Dempsey, so it wasn't a completely wasted trip, huh?!

Well, I feel like I could write all night about the day, but that pretty much sums it up. Hope everyone has a great 3-day weekend and holiday, and I'll catch you again Sunday evening!


Thursday, May 26, 2005

2nd PIC Line

Today was a long day. Bailey had a bad headache when she woke up, and it lasted pretty much all day. She got sick to her stomach and vomited. In the midst of all that, they delivered the news that she had to get a second PIC line put in today, because they want to try a new medication that will hopefully bring her PA pressures down even more. This medication has to have its own uninterruped line, so that's why she needed a second one. So, she had all day to not eat anything (because of the anesthesia) and to worry. We finally went down to IR (interventional radiology) around 4:00. They gave her versed (to calm her and to make her forget everything) and some other medication that does pretty much more of the same thing. Well, she remembers everything . . . and it wasn't pretty. She was so scared. If you remember, the first PIC line was awful. The transport team came up and tried 4 times to get one started that day, but finally gave up. Her arm was so injured that she had to go through physical therapy to regain movement. So, when she heard "PCI line", she was thinking of that day. Fortunately, this time we skipped the transport team and went straight to IR where everything went very smoothly. She was just scared to death and cried out the whole time. Beth, Dr. T's nurse, went with us and was standing at Bailey's head trying to talk to her and calm her. Beth put her hands on both sides of Bailey's head and said, "Bailey, listen. Bailey, Bailey. Listen to me, Bailey." Bailey immediately stopped crying, took a deep breath, and forced out, "I can't. Your hands are over my ears!" We all started laughing! That's the Bailey we all love! I think she was more worried about the two stitches holding the PIC line in than the PIC line itself. She kept asking when he was going to stitch it, and he finally said, "I'm not going to stitch it. We have this new device that just locks it into place and it sticks to your arm like tape." She started giggling, she was so happy. We got back to the room and she ate a little dinner, and took nearly a 2-hour nap. I, of course, took advantage of that too and laid down myself. (Sorry, Sue and Larry, for missing your visit! Thank you for the goodies!) She's feeling better, but still has a pretty bad headache.

So, I'm not really sure what's behind this new medication (prostecycline - sp?), because I haven't had the chance to talk to Dr. T about it. What I think is going on, is they are going to test the medication in the morning to see if her pressures react to it and, if they do, they are going to use it after transplant to help speed recovery. I don't think it's something they're going to hook up right now and keep going. And, also, I don't know if they're worried about her pressures. Her cardiologist said the pressures are the same as in past echos, so I think they're just ideally wanting them to come down a little more. I will hopefully clarify all this with Dr. T tomorrow. He stopped in before we went down for the PIC line, and he did say that this medication might help her recover quicker and go home quicker after transplant . . . "but not until after she sells all her jewelry" [because he still wants his cut]. We're trying to talk him into buying his mother a necklace, but he says his mother doesn't like jewelry. What women doesn't like jewelry?

So, that was our day. Pretty stressful and tiring. I'll let you know how everything goes tomorrow, of course. Thanks for checking in!

Have a good night,

Wednesday, May 25, 2005

Another Echo Today

Another echo today - this one more in-depth - but all still seems well. I think the cardiologists and the surgeons are in the midst of discussions regarding whether or not Bailey benefits from the increase in VAD rate. They turned the rate up to 120 beats per minute and extra beats started again. So they turned it back down to the 100 beats per minute that it's been on since the weekend. It's really strange to watch the echo screen and see her heart beating at 60-some beats per minute but the Berlin Heart pumping twice that rate. It's an incredible thing what they're doing here. I am constantly in awe of the medical staff's abilities. But even beyond that, their ability to emotionally take care of us is incredibly impressive. Definitely the best I've ever seen or heard of. Thank you, Riley!!

I got to leave for a couple hours today to see Josie's awards ceremony at school. I'm so proud of her! She got lots of awards - honor roll, super citizen, outstanding student, art, music, and lots of others I can't even remember at the moment. I think the only one she didn't get was perfect attendance. Way to go, Josie!!

Marissa had a softball game tonight. I didn't get to go, but she said she didn't bat again (she's too scared). But she had fun! She fielded a ball and threw it to first base. She was very proud of herself . . . and so am I!

Dr. T tried to come in our room today when the curtain was drawn and Bailey was sitting at her bedside toilet. There was lots of commotion going on, so I met him at the door when he was asking if she was about done. I told him, "No, I think she needs a magazine." [Of course, Bailey was yelling at me in the background for saying that.] After we stopped laughing, he said, "Well, I can't wait around for THAT. I have work to do." So he left and came back a couple hours later to cycle her machine. (That simply means he logs in the computer, confirms the settings, and logs back off.) When he walked in, she said, "Can I do it today?" (She's only seen it . . . let's see . . . about 100 times. In fact, one of Dr. T's people came in over the weekend to do something with the machine, and he didn't remember the password. Bailey informed him what it was. He simply said, "Oh, thanks.") Anyway, he stood behind her while she cycled it herself. He said, "Good. Now I don't have to come in on the weekends."

All is going well. Just hanging out waiting on a heart. It's good to hear from everyone! Thank you for keeping in touch and praying for us. It will happen when the time is right.

Catch you later,

(P.S. Hey, Bubba, CONGRATULATIONS!!!! I am incredibly excited for you guys! Big, big hugs to both you and Stacey!! - And I laughed hysterically at your comment. I miss you, man.)

Tuesday, May 24, 2005

Echo Was Fine . . . I Guess

Bailey had her echo today. They were only in there about 5 minutes - unusually quick - but they didn't make any adjustments to her pump. It's still set at 100 beats per minute. She still has some extra beats on occasion (about once in the night and once during the day), but they still don't seem to be concerned. She's feeling fine, though. Yesterday she thought she could feel her heart jumping around, but, for the most part, she can't really tell when it happens.

Bailey pointed out this marble-sized lump I have on my forearm yesterday. Thanks to her, it's bugging me now, too. We tried to get Dr. T to "take care of it", but no go. It's the least he could do for us, don't you think? Haha! (I truly am kidding.) I guess I have to call my doctor now. Gee whiz! Now I'm a little self-conscious about it. Bailey says it looks nasty. Isn't that nice? All I've done for her, and she has to be grossed out by me.

I hear through the grapevine that Patrick Dempsey is coming to meet Bailey any time between Thursday and Monday. We were teasing Bailey tonight that she's going to have to clean up every single day, just in case! (She tends to wear the same clothes for days at a time. Must be that teen thing.) I also heard that he wants to spend quite a bit of time with Dr. T while he's here. We were teasing Dr. T earlier today about it. He doesn't even watch his show, Gray's Anatomy. We're filling him in all about the show so he can get excited about his visit. I don't know if it'll work . . . we'll see. He's fun to mess with. The nurses all seem to be a little intimidated by him. What's nice is he can't fire us! (At least until Bailey starts working with him in about 10 years.)

Went to Teen Movie Night tonight. Saw "Are We There Yet". It was a cute movie. Then came back just in time to catch American Idol. Go Bo! Will someone bring me his CD whenever he makes one and it's on the store shelves? - We might still be here. Saw another interesting article today. Can't remember what magazine - Woman's World, or something like that? This lady developed cardiomyopathy during her pregnancy. Immediately after they did her C-section (6 weeks before her due date), they took her into surgery and put a heart pump in her. She was in the hospital for 11 months waiting on a transplant. She went home 2 days before her baby's 1st birthday. Wow! Hope we're not here THAT long. I love this place, but . . .

Hope everyone's doing well. I changed the set-up of this blog page to allow "anyone" to post a comment, as opposed to "a registered user" only. Hope that makes it easier for people to comment. Even if we don't know you, I would love to hear from all of you who are reading this. I'd like to know where you're from, too, if you don't mind. It's interesting to hear about all the people keeping posted on Bailey. I don't know though. On second thought, I might get really scared to write anymore if I know that very many people are reading. Remember? I nearly vomited in speech class! Haha! I'll try to keep it going.

Love you all,

Monday, May 23, 2005

Some More Extra Beats

We were supposed to have an echo done today to see of Bailey's PA pressures have come down since the increased beats per minute, but it turned into a pretty stressful day for the cardiology department (for some reason), so we didn't get that done. We started walking down the hall to get some lunch, and we were stopped by Bailey's nurse because she was having some more extra beats. She had called Dr. Brown (another one of her CV surgeons - Dr. T was in surgery) and Dr. T's nurse practitioner and assistant to review her strips. After about 30 minutes, we were released to go to lunch. Dr. Brown wasn't too worried about them since the Berlin heart is supporting her heart. Bailey was a little worried there for a little bit, but we talked through it and the rest of the day went well.

We got to watch a movie, work on some math homework, play some computer games, and make some jewelry. We tried to eat lunch outside in the courtyard, but it was too windy! It blew my piece of chocolate cake upside down! I still ate it, of course.

I don't even have a Dr. T story for you today. He stopped in a couple of times, but he was pretty busy in the surgery room today. Any day that we are NOT the reason for them having a tough day is a good day for us. They say that 3-day holiday weekends are good for organ donations - unfortunately for the general public, there are lots of traffic accidents during those times. (Please drive carefully, everyone!) We have personally met 3 transplant patients who were transplanted on Memorial or Labor Day weekends. Wouldn't that be something if we got one this weekend? We'll just have to wait and see.

I wasn't here this weekend and heard this story second-hand, but its worth passing on. There was a teenage boy here who had a surgery done to push his chest cavity out because it had sunk in putting pressure on his heart. Apparently, he was very concerned about his physical appearance after his surgery and whether he would look noticeably different. He thought he would find out for himself, so after surgery, when he was on a high-powered pain-killer drip (one that makes one a little . . . cuckoo), he took off his shirt and started walking down the hall asking everyone he came in contact with how his chest looked and if his "pecs" looked good, as he flexed his muscles. Poor guy! I hope he doesn't remember anything that happened when he was on that pain medication! But I wish I could have been here for that . . . that would have been one to remember. He must have been doing very well, though, because he was sent home before I came back yesterday.

We'll see you tomorrow. Good night!


Sunday, May 22, 2005

An Irregular Heartbeat

Well, I go away for about 36 hours, and look what happens. Dr. T came back into town (yeah!!) yesterday, and increased the heart rate on Bailey's pump from 90 to 115 beats per minute. Apparently, the echo they did last week showed that her PA pressure had plateaued, and they wanted to see if taking more load off her heart would bring it down even further. But the increase caused her heart to beat irregularly. They gave her some magnesium and backed off to 100 beats per minute, and it has been beating fine all day today. They didn't seem to be worried about anything. Since she has a history in the past of irregular heartbeat, they weren't too surprised. At least, that's what I understand second-handed. I haven't talked to any doctor directly since I was home for the weekend.

And it was a beautiful weekend! I even mowed the grass for the first time this year. And, oh, my back is aching. I'm out of shape. We had a fire in our outdoor fireplace last night, and then I took a nice long, relaxing bath. Last week was a hard week. Probably a combination of several things, but Bailey and I just didn't seem to be on the same wavelength. I think we were both dealing with our own emotions and just got a little out of whack. I'm feeling better about this week. I think it will be better. She did an incredible job on her homework tonight. She's been working on it for about 2 hours now. Science is done; Social Studies is done; English/Grammar is just two spelling tests short of being done; and all we have left this week is math. This is exactly where we wanted to be. Hopefully we'll get math done this week. Michelle, her teacher here at Riley, is coming at 10:00 in the morning this week and staying until noon so we can get math cleared up - she normally comes at 11:00 for only an hour. We'll both be very excited when school is over.

Marissa and Josie have started playing softball. I don't know what Marissa's league is called, but they don't count any outs (everyone bats and hits), and they don't play any positions (everyone lines up in the infield). She had her first game last week, but still hasn't generated enough nerve to bat - she doesn't like anyone watching her. I hope she can work through her fear, though, because she really is a very good hitter. Josie's first game last week was rained out. I hope I get to go to a game or two!

We had fun on Saturday. Tom worked, so I took the girls to the park (where I was talking on the phone with Scott and swallowed a bug!! Ugghhhh!!! I could never do Fear Factor), then we went for ice cream, and then we played with crawdads in a little stream. Josie about wet her pants when she poked one of them with a stick and it darted off as quick as lightning. Haha!! We had a really fun time. The girls were filthy dirty at the end of the day - that ALWAYS means they had a great day.

Colin came to visit today with his dad and his friend, Brandon. Brandon became paralyzed as a result of a wrestling accident in high school and is now in a wheelchair. The two of them are nuts! They're such nice boys. We had a good time visiting with them. They were both pointing out shells and beads that Bailey can use to make them necklaces and bracelets.

I don't think there's too much more to report on. It's good to be back. People are like family here. We're gonna miss them when we go home!

Have a great week everyone!

Love, Angie

This is Bailey's attempt to take a picture of herself. Nice! Posted by Hello

Bailey helps hand out Magnet-status (a very high national honor) pins to some Heart Center nurses. Posted by Hello

The two race-car drivers (Mishael Abbott and Jeff Bucknum) who took home Bailey's (far left) and Marissa's (middle) birdhouses. Posted by Hello

Bailey just got drenched by Dr. T ... again! Posted by Hello

Bailey, Marissa and I with some of the Indy 500 Princesses (notice, Bailey is still drenched). Posted by Hello

Bailey and Marissa playing with a Matchbox race car (Bailey's holding her Berlin Heart line up off the floor with her toes). Posted by Hello

Josie doing Marissa's hair; Marissa doing Leslie's hair; Leslie taking a well-deserved breather. Posted by Hello

(L-R): Mary (charge nurse on days) and Jennifer (one of Bailey's favorite nurses). Posted by Hello

(L-R): Debbie (our transplant coordinator) and Shondra (our Child Life specialist a/k/a our play buddy). Posted by Hello

Bailey and Shondra making "Shrink-a-dinks". (They're not sure they're not going to start a fire!) Posted by Hello

Bailey posing with some of the 1000 paper cranes her class at school made for her. Aren't they beautiful? Posted by Hello

Here's one-half of the room. (I sleep on the bench underneath these cranes and it makes it feel like a little island getaway.) Posted by Hello

Bailey drawing her own blood for labs . . . Posted by Hello

. . . and flushing her PIC line. Posted by Hello

Josie swings Marissa . . . Posted by Hello

. . . and Marissa trying her hardest to swing Josie. Posted by Hello

Friday, May 20, 2005

A Big Day of Homework

Today was mostly taken up by a science report on rocks. We went down to the library, and Bailey did some research and gathered information for her report. We then tried to get a cheeseburger at her favorite grill in the cafeteria, but they were already closing down at 10 minutes before 2:00. Bummer!! We were truly disappointed. So, we fell back on the old McDonalds. Marissa didn't seem to mind.

I tried to take a nap this afternoon because I was up 'til 2:00 this morning. Bailey fell asleep at 9:00 last night but woke up at 10:30 for her dressing change and was up for the night. I think she fell asleep shortly after I did. But she got a lot of homework done. She's now seeing how close she is to getting it all done for the year, so she's really putting a lot of effort into it. I think she sees the light at the end of the tunnel . . . for school, that is. It's hard telling still how long we'll be here at the hospital. The transplant coordinator told us today that Dr. T is considering going back to crossmatching again. To be quite honest, I'm not sure how that affects getting a heart. When they did away with the crossmatching about a month ago, they thought that would speed things up a bit, but it doesn't appear to have done that. Once again, I firmly believe that she'll get a heart when it's time - whether a crossmatch has anything to do with it or not. It's all in God's plan.

Circumstances called for Marissa to go home tonight (she has softball pictures early in the morning), and Josie came and is spending the night. Marissa wasn't too happy about that. She didn't understand why Josie got to stay but she had to go. I even pointed out that she's been able to spend several nights here without Josie because Josie had to go to school, but she didn't much care to hear that explanation. She was trying really, really hard not to cry.

I tried to get a picture of our pigeon-friend who lives across the way from our window in a cubby near the Lifeline helipad. We've been staring at each other for over 3 months now. I think he's getting used to us because he'll fly over to our rooftop and just look at us. He has the deepest red eyes. (Actually, I guess he might be a she because there's probably a nest somewhere over there. But I still like calling her a him.) I don't think my picture came out, though. I think it blurred.

See! When Dr. T leaves town, I start talking to the birds. Come back, Dr. T, come back!!

Dr. Hart (who is watching us while Dr. T is out of town) tried to fix Bailey's PIC line stitch tonight that broke loose last week. She was so upset, though, that he didn't want to pursue it any further. They only got the numbing cream on the site and she was done with it. She asked if I was mad at her for not getting it done. I said absolutely not. People have their own fears. Her fear is needles. She's had a million shots since we've been here but hasn't had a great experience with arterial lines, central lines, IV's or PIC lines. She's perfectly entitled to have something that she's afraid of. (My fear is spiders. I scream at the smallest, harriest little beings.) So, he's coming back in the morning with some valium. Hopefully he'll bring some for me, too.

Dr. T would be proud of us! It stormed yesterday and we didn't even take the Berlin Heart out in the lightning. Aren't we good? (He's not even here and we're still harassing him.)

I'm going home in the morning. I'll try to post some more pictures this weekend. But I'm also going to try and get some spring flowers planted. Physical labor might be good for me to keep my mind from wandering - I tend to do that when I'm away from the hospital.

Please keep praying for the donor's family. When the time comes, it will truly be monumental moments for both families.

Have a great weekend, everyone!

Hugs to you all,


A Thousand Paper Cranes

Wow. Did you guys see the Pacers-Detroit game tonight? Reggie Miller is done. That was really moving at the end of the game. Bailey got to meet Reggie the day before Christmas Eve when we met with the doctors here at Riley to discuss the plan for Bailey. The whole team came here to visit the patients. Bailey got to walk around with Reggie and he held her hand the whole time. He talked to her about school and just really made her feel special. Thank you, Reggie, for taking the time to visit the kids here at Riley, for taking care of Bailey during your visit here, and for entertaining Indiana for the past 18 years. You will be missed.

We had lots of visitors today. Thank you to each and every one of you for taking some time out of your schedule to visit with us. You made the day fly by. One special visitor was Bailey's art teacher from school, Miss Mayes. Bailey's 7th grade art class at school was very busy working on their latest project -- they made 1,000 paper cranes, all different bright beautiful colors -- and Miss Mayes brought them in today and hung them all from Bailey's ceiling while I distracted her by taking her out of the room for a while. There is a Japanese legend that when 1,000 cranes are given to someone sick, good health will follow. Bailey and I were so touched by the efforts of her class at school. Each art class had their picture taken and signed a card for Bailey. It was so nice to see all their faces and good wishes specially for Bailey. Kids, thank you SO MUCH for giving Bailey the gift of 1,000 paper cranes. I wish I could give each of you a hug, but please know that you touched our hearts today. Have a great last week of school and a wonderful summer. Bailey will see you in 8th grade!
Marissa gets to spend the night with us tonight. I'm a little lonely, though - both she and Bailey are asleep already! What's up with that?

Dr. T's out of town, so I don't have any store about him today. He's somewhere in Texas participating in a clinical trial of some sort. And, Uncle Harlan, when he returns, I'll be sure and tell him that you have flown an old Bonanza V-Tail. (Did I get that right?) He'll be impressed! Can't wait to see you in June.

Have a good one, everybody!

Love to all, Angie

Thursday, May 19, 2005

We Get to Meet Nolan

Not much going on today, really, except school. Dr. T came in right before school time and was ready to take Bailey and me on another field trip to Methodist, but we couldn't go since her teacher was coming soon. He couldn't wait until the afternoon because he's going out of town. Yes!! You read correctly. He's leaving us again. Not for as long this time though. He's gone until either Saturday or Sunday - depending on whether he visits some Berlin people in Hershey, PA, for a day before he returns. I told him I was disappointed in his decision. He didn't seem to mind a whole lot. Bailey started badgering him - like normal - and I said, "Be careful what you say to him, Bailey, because when you grow up and start working for him he'll be able to fire you." He rolled his eyes again. I don't think he's liking that idea.

Dr. Cox came in to check on us. She's one of the doctors who took us to the Pacers game. We were talking about how we're going to miss everyone here when we leave - whenever that might be. She assured us that we wouldn't lose touch with everyone here. She said Dr. T's too attached now. Technically, we'll only see him for one surgery follow-up visit after our dischcharge, because we'll be followed closely by her cardiologist, Dr. Darragh. We'll have to keep in touch, because we'll go home and suffer withdrawal from all the excitement around here!

(I don't know what Bailey's doing, but I'm sitting out in the hallway typing this update, and she has rolled herself out of her room and is now hovering behind me. It's only 1/2 hour until bedtime, so she'd better roll herself back in there!)

We got a visit today from Jennifer and her son, Nolan. He's a 4-year old who had a transplant when he was 8 months old. It was nice to talk to her about stuff after transplant. She made me feel better that it won't be quite as overwhelming as I'm probably expecting. She also has 2 other children, so there were similarities there too. She was also pointing out some things in which Nolan had to have special care. Ultimately, though, she said he's a bundle of energy and you would not know by looking at him that he had a transplant. He is such a cutie! (Thank you, Jennifer, for taking the time to meet us and talk with us. We enjoyed our time together. Did Nolan [I'm sorry if I'm misspelling his name] solve the puzzle yet?)

There's an article in this month's Family Circle magazine about a 13 year old girl whose organs were donated and saved the life of 5 people and the vision of 2 people. It was a really neat story. Bailey wanted to read it, and really liked it. If you get a chance, pick it up. It's a good story.

Keith Urban won two awards last night on the ACM's -- BEST ALBUM OF THE YEAR, and BEST MALE VOCALIST OF THE YEAR. (Just wanted to let everyone know that.) Congrats, Keith!!

I hear it's supposed to rain and maybe storm tomorrow. I guess we won't be eating outside in the courtyard, but we'll still enjoy the day! Hope you all do, too.

Talk to you soon,

Tuesday, May 17, 2005

Pizza Hut Talk

Bailey woke up at 10:00 this morning because she was asked to talk to a room full of Pizza Hut employees about her stay here at Riley and her brief medical history. Pizza Hut is getting ready to do a fundraiser for Riley Hospital, so they had some patients talk to them for motivation. Bailey did a GREAT job. The view of the room was blocked right up to the doorway leading in to the room, and we immediately walked in to a room full of about 40 or 50 people all staring at us. I heard Bailey actually wimper from behind her mask, and I nearly fainted because I thought I was going to have to talk to these people (I don't do well talking to more than about 3 people at a time!), but they were very nice and welcoming people and asked Bailey lots of easy questions. We were only in there about 5 minutes, but I was very proud of her. She explained everything better than anyone else would be able to (with the exception of maybe Dr. T, but he would have been too boring - haha!!).

When we got back to the room, we were talking about how well she did explaining everything, and I asked her if she was going to go into the medical field when she grew up. She said yes, and then I asked whose job she would like to have out of all the people here we know and have met recently. She said she wanted to be a nurse right here on the Heart Center. I said, "Cool! You could be working with Dr. T some day." She said, "Hardly! He'd be like 80." We both laughed about that for a while. Then Dr. T came in and we had to tell him about our conversation. I said to him, "Wouldn't you like to work with Bailey?" And he rolled his eyes and mumbled something about early retirement. He would love it and he knows it!

Bailey woke up with a terrible headache this morning. She somehow managed to make it through the Pizza Hut talk but when we got back up to the room, it was back for a short time again. Luckily it went away very quickly and hasn't come back since. We're thinking it was lingering effects of the IVIG she had last Friday - nausea and/or headache seem to come and go for 3 or 4 days out.

In our emotional breakdown yesterday, I don't think I reported that they did an echo on Bailey yesterday. It was just to take another look to make sure nothing in her heart has changed to where they would re-think transplant. We haven't heard anything about the results, so we're fairly certainly that means no change.

Got a lot of science homework done today - got some more jewelry orders in today. There was a litte girl next door (10 years old) who was discharged and sent home this afternoon, but before she left her mom came over and said her daughter would love to have a piece of jewelry from Bailey, so Bailey whipped her up a bracelet. She was so happy to get it - she just smiled and waved good-bye on the way out the door.

We had an incredible lunch outside in the courtyard again today. It was sooooooo beautiful outside!

The nurses are going to try and help me get Bailey to bed earlier. They're doing her dressing change at 10am and 10pm so they can be out of the way for an 11:00 bedtime. We'll see how that works tonight. She was already whining about it earlier this evening, so maybe all the whining is out of the way. (I know! I'm not holding my breath.)

Thank you, guys, for all your comments out there. They are so nice to ready - like electronic greeting cards of encouragement and support. Thank you all for taking the time to lift our spirits. We look forward to reading them every evening. We love you all!

Have a good night and a great day tomorrow.

Love, Angie

Day 109

Today was an emotionally difficult day for both me and Bailey. Thank goodness for good staff. Dr. T's staff caught drift of our difficulties today and took care of us. His nurse practitioner, Beth, came by offering us moral support, and then Dr. T came up and asked if we wanted to go over to Methodist with him while he did his rounds over there. So we went for another train ride over to Methodist - Beth went with us for medical (and emotional) support. While he was rounding, he sent us to the gift shop . . . but he wouldn't give us his credit card - and I asked, too! Beth was a sweetheart - she took Marissa in the gift shop to buy her something, and Marissa picked out what Beth thought was Play Dough. She had Bailey pick something out too, and we went to the lobby area to wait for Dr. T. Marissa opened her "play dough" and it turned out to be noise putty. If you don't know what that is, it makes a terrible noise of . . . passing gas. Beth was soooooooo embarassed. She apologized to me at least 5 times on our trip back to Riley. She was so embarassed, yet she was scheming with Marissa to walk up behind Dr. T and "let it rip". There's quite a walk involved in going back to the train and then to Riley, and Marissa was hovering around Dr. T the whole time, "letting it rip" about every 10 steps or so. He was a good sport! She was so adorable - belly laughing when she'd rip a good one! Haha!! When we got off the train at Riley and walking down the long cat walk back to the hospital, Dr. T was pushing the machine and he was getting faster and faster and actually started jogging with it. Of course, Bailey is attached to it by a 6-foot cord and had no alternative but to jog right along with him. He enjoyed that! I think he just has to prove to himself on occasion that he still has power over her. (I wonder if that's a first - a patient on a Berlin Heart jogging?)

We got back to the room to find Colin and his dad waiting on us. Colin came for a follow-up appointment today - his heart is looking better and he's feeling great. It was good to see them - they really are like family now. Marissa and Josie had a good time visiting with him too. Marissa was having so much fun, she didn't even cry when she left to go home! She whispered to me before she left, "Mommy, I think Colin and I are getting to be good friends." And Josie has a crush on him. I don't know if I can handle motherhood!

We're still chopping away at homework. She's only about 1 day away from finishing up science and social studies for the year. Really the only subject she's working hard on is math, and she's got an A- in that so far. She's doing very well, and will be very excited for summer break. The teachers here at Riley take the summer off too, so that will be nice and relaxing not to have to worry about homework.

Looking forward to a good night's sleep for both me and Bailey. I'm really trying to get her to move to an earlier bedtime (like before midnight - preferably 11:00), but it's difficult. Lots of things to work in at night like dressing change, medicines, homework, etc. It just seems like it's midnight before we know it. But I'm still working on it! She was very difficult to wake up this morning at 11:00 when her teacher came, which started the whole day off on the wrong foot. Hopefully tomorrow will be better.

Wish me luck! and a prayer would be helpful too!

Love to all,


P.S. - Hey, David - Congratulations on your new job! We're all very proud of you!!

Monday, May 16, 2005

So Many Things To Be Grateful For

It gets harder and harder to leave on weekends. The walking out of the door and the 12 hours leading up to that do get easier, but as soon as I get home, my impatience and anxiety seem to grow wild. I guess it just goes back to being separated from Bailey . . . and the fact that we've been here a very long time . . . and God really is the only one who knows how much longer we'll be here. Maybe, just maybe, it's starting to get to me a little.

The big picture really is amazing. Bailey's got a machine from half-way across the world keeping her heart pumping. Back in December and January, she was in heart failure and growing sicker every day. Watching her body accumulate more fluid as the days went by was such a sickening, panicky thing to go through. With our faith in God, and everything we've learned reading Max Lucado's "It's Not About Me", we are able to find peace and a place where we can remain positive. The incredible fear and hopelessness that can easily and quickly creep in is so very destructive. We've been able to take every opportunity to laugh and every opportunity to be positive, and every opportunity to give thanks to God for keeping us strong. The friendships that we're building here with doctors and nurses and other staff is incredibly rewarding. I'm so grateful Riley is in our backyard, because I know these friendships will continue to thrive after we go home. Just so many things to be grateful for - all of you guys out there for reading these little updates which really are simply my journal entries. I'm glad that this blog page has somehow reached so many people, and I hope you find nothing but positive things here. This truly is an experience that I hope no one else needs to go through, but it is incredible to see the medical team working together with God to make Bailey better so we can go home. I really wish this documentary they're putting together could be about 10 hours long - instead of one hour - because I think it will take about that much time to get an accurate picture of this whole experience with the Berlin Heart. The guys at IMS volunteering their expertise and time in creating this documentary is an incredibe honor in itself. The narrator wanting to meet Bailey so he can get to know our family and become a part of our experience strikes me as such a grand gesture on his part. It's fun to giggle over his coming to Indy and meeting him, but the bottom line is that he wants to get to know Bailey and try to begin to get a feel for what she's going through. He's already gained my respect as a fellow human being trying to help a child in need (and many other kids in the future).

See?! I TOLD you it must be starting to get to me! Haha!! Really, don't worry about me. I'm not falling apart - just reflecting on the past 6 months and on the future 6 months - wherever they might lead us.

I'm glad to be back with Bailey. I enjoyed my time at home - had a GREAT time, in fact. I'm really anxious to have us all together again under one roof. Marissa's here spending the night with us tonight. I think she's going to be spending the rest of the week at Kindercare to see her friends who she's been talking about since January! She misses them so much. And thanks, Kindercare, for being so good to all of my girls these last 10-plus years. You guys are the absolute BEST!! - every single one of you!!

I'm going to try and get Bailey in bed by midnight tonight (wish me luck - I'll need it!!), so I'd better go.

Good night, everyone. Sleep well!


Saturday, May 14, 2005

Yet Another Water Fight!

The day started with Rissy crawling into bed with me. It was so nice to wake up to a hug from my little one! When Bailey was doing her schoolwork, Marissa and I walked to the IUPUI bookstore, then over to University Place for lunch (Bailey had a lunch date with her nurse, Leslie), and then we took a ride on the train to Methodist and back. She loved the train! She wanted to ride again, but we came back to Bailey's room just in time to join her for lunch outside in the courtyard. It was so beautiful out! We sat at a little table under an umbrella and absolutely enjoyed the outdoors.

Then several members of her medical team met with us today to see what they could be doing different/better to make our stay here more enjoyable or easier. We didn't really come up with anything. We are being kept very busy with different activities - there's not really a chance to get bored here. I think maybe they're starting to feel sorry for us. I don't know if I was supposed to say this, but I told them we were having a pretty good time here (as you can see from all the stories). They just laughed. We're really low-maintenance people. Our expectations and demands are very low - I think they have to be to get through a situation like this. We just live day-to-day, trying our best to enjoy every moment possible. The staff helps tremendously. I've seen signs ever since we've been here saying that the nurses here at Riley (maybe all of Clarian) have attained Magnet status. I just learned yesterday that only 3% of the nurses in the United States earn Magnet status. Apparently it's very difficult to get, and our nurses have done it! They had a pin ceremony yesterday to hand out pins, and they asked Bailey if she wanted to participate in handing them out. She did, of course, and the boss of the nurses (I've never seen here around here before - she must be the "big boss") told them how proud of them she was and that they should be proud of themselves. Then Bailey and I told them that we were proud of them too, and they said that coming from a patient, that meant even more. They are really incredibly gifted people around here. I would like to take them all home with us when we leave.

The 500 Princesses came to visit Riley today, and they had to wait outside Bailey's room while the nurse finished up her dressing change. While they were waiting outside the door, Dr. T comes in and we exchange griefs for a few minutes. Then Bailey tells him that Nancee (her nurse) ran over her Berlin Heart cord with "the cart" (meaning, the 180-pound-or-so big blue box with wheels). He misunderstood her and he thought she said "car". He was obviously quite alarmed and concerned (we couldn't figure out why he would be so upset because we weren't aware yet of the miscommunitation), walked around to the cord and said, "Ok, where did the car run over the cord?" We all busted out laughing!! "Not car, cart!" After he calms down, a huge flash of lightning lights the sky, and he says, "And you know you should never be outside with the Berlin Heart when it's lightning." We all look at him - again, like he is an alien. I have no idea where he thinks we go with this Berlin Heart that we would get hit by lightning!!! or a car would run over the cord!!!

After the laughter died down a bit, he started to walk out of the room, and Bailey flicks him with water. Ya know, she just never, ever learns. He says, "Oh! Oh! You wanna do that?!" as he's walking over to the squirt guns by the sink. He grabs one and just stands at the door and pummels Bailey until the entire thing is emptied. She tried to run, but with the Berlin Heart, she didn't get very far! And we didn't wait on her!! Her nurse and I (holding Marissa) ran for the door and took cover. When he's finished (keep in mind, Bailey is sopping wet!) he simply turns around, sees the Princesses and that they saw the whole thing, hands the nurse the squirt gun, and walks away as if nothing happened. So Bailey gets her picture taken with these beautifully-dressed and made-up, pink, crowned princesses, while she is soaking wet. It's an interesting picture. I'm not sure what kind of picture that painted for the Princesses though . . .

Josie came tonight to spend the night with us - we're having a slumber party!! Rissy's already asleep, and we're watching the movie "Sweet Home Alabama" to get geered up for Patrick Dempsey's visit!

They didn't do anything with her PIC line today. Not sure why - I just don't think "our people" could get in touch with "their people" - I just think the timing was off. I guess it's not a big concern for anyone.

Bailey's getting some more IVIG tonight (to reduce her antibodies). She might be a bit nauseous and a headache in the morning.

Going home tomorrow - catch you Sunday evening. Have a great weekend everyone!

Love, Angie

Friday, May 13, 2005

A Bit More Freedom to Move Around

Wow! Dr. T gave us permission to move about the hospital without a nurse escort. That means we can just pick up and go wherever we want, as long as the nurse knows where we're going. We have to take a phone and the Heart Center number with us, in case we would need it. We had to be trained on the hand-pump for safety reasons, but I've seen all the other nurses get trained on it, so I already knew anyway. It's been fun! Bailey and I found a jigsaw puzzle on the two computers in the parent lounge, and we've been racing to put them together. That's been fun too!

Even though Dr. T told us yesterday that we could go places by ourselves without a nurse, the nurses couldn't let us do that yet because they didn't have a written order from him. So he popped in early this afternoon and we asked him for an order. He asked if I knew how to work the pump and I said yes, that they officially showed me last night. He then asked if I hooked it up and practiced! (That, of course, means that we unhook her hose from the Berlin Heart computer and manually pumped the machine!) I looked at him like he was crazy, and said "No! No one else has done that! And I would rather not!" Then I was asking him, if all you have to do is pull the hose straight out, how does it stay in there? He responds with, "I don't know. I don't know how to work it." I gave him so much grief. I said, "So I've had a false sense of security in you for the last 3 months?!" He just laughed at me. Then he discovered the dark chocolate peanut M&M's that Vickie brought earlier today - and he stands there sucking those down. (Thank you, Vickie. You made his day!) He came up after a very complicated surgery and he must have needed the sugar.

They had a party in the atrium this afternoon to welcome spring. Bailey made a lamb out of cotton balls. It's so cute!

Josie and Marissa are coming over tomorrow night for a slumber party. Marissa's coming in the morning to spend the day, and Josie's coming over later. That will be a fun girly time!

Bailey is getting her PIC line stitches fixed tomorrow. Hopefully that won't be any big deal, but she's a little nervous. You might say an extra prayer for her.

I think that just about covers today. Not as action-packed as yesterday, but we've been having fun moving about by ourselves.

Hope everyone's been having a good week. I'll check in again tomorrow.


Wednesday, May 11, 2005

Clinic and People Mover

Dr. T is the BEST! He's the MAN!! (I had to start out with that because he just found out today that Bailey has a web page, and he might be reading this now. So . . .) He's just the best darned guy THERE EVER WAS!

Now, with that out of the way . . . we had a fun day today! We started out by teasing Dr. T about being so excited to ride the People Mover, and Bailey let it out that she already knew he changed his mind - she just wanted him to suffer a little bit. Then, of course, he drags me into the whole thing and tells her that I'm the one who didn't approve of riding the train. Anyway, believe it or not, we end up riding it today! . . . but I'll get to that later.

He invites Bailey to come see him in clinic today - not as a patient but as something to do to get us out of the room. So, we did. We sat in a conference room where doctors and nurses were stepping in and out. He even put her to work for a little while - he would dictate instructions for patients and she would write it down on a sheet of paper for him. She really had fun doing that. He tried to tell us that since we've been here so long we needed to start earning our keep. Then we tried to talk him into taking us on another outing - we mentioned boating, jet skiing, landscaping his yard, a trip to Chicago or Las Vegas, etc. etc. etc. We were getting a little crazy in our ideas, but had a good time. Somewhere during our brainstorming, Bailey even called him "woosy-man" (or however you spell that - Bill, I've always had trouble spelling that word!). I don't get what all the eye-rolling was about -- I thought they sounded like very legitimate suggestions! Anyway, we (or should I say, Bailey - because I would never!) finally beat him down so much that he took us a ride on the train. I'll have to say that I was quite nervous - I made him push it onto the train and then he stood next to it and guarded it, but everything went very smoothly. We rode it over to Methodist and back. It was much smoother than I had envisioned - we've heard lots of stories about it that were not always positive. Dr. T has two adults over at Methodist who are on a VAD, and he said he might let us visit with them once they start feeling better. That would be really neat!

We get to go visit pre-op next week to see what they do over there. Who knows? Bailey might end up working in the medical field one day. It was fun visiting clinic today. To see the doctors at work seeing patients was interesting - we didn't get to see or talk to patients (that would probably be some violation of some sort), but it was fun to talk to the cardiologists and surgeons on a social level. Bailey had a really good time hanging out with Dr. T - she thinks the world of him, and rightly so.

We got a visit today from Dane, a little 1 year old boy who was born with aortic stenosis (the same defect Bailey was born with). He's going to be having surgery this summer - hopefully a repair that will fix him right up. It was very nice to meet you and your parents, Dane. Good luck with everything coming up. I hope we're not still here when you have your surgery but, if we are, it will be nice to have a little buddy around! We'll be praying for you.

Only two more weeks of school left! It will be nice to get that out of the way. That's really the only thing Bailey doesn't look forward to on a daily basis. But we'll miss Michelle, her teacher here at Riley. She's a sweetheart.

Hope everyone is safe out there, and enjoy your friends and family. We are!

Love, Angie

We Meet the Race Car Drivers

Dr. T woke Bailey up this morning at 10:00 because he "was bored". He had a surgery to do but they apparently weren't ready for him yet, so he decided to come up and "get some M&M's". (Hey, Vickie, he LOVES those dark M&M's. Can you bring some more?) He started heaping blankets, pillows, sweatshirts and anything else he could find on top of her. Bailey was pretending to be sleeping . . . then the pile of stuff started jumping because she was laughing underneath there. Dr. T got a kick out of that. Then he ran out of here to do his surgery.

He came back early in the afternoon and asked Bailey if she wanted to take a ride on the People Mover (it's the tram that goes over to Methodist). He got her all excited, and he said he'd go over and check it out. He came back and said he couldn't do it today because he was going into a surgery but we could do it tomorrow. Then, when Bailey was down in the gift shop, he comes in and says he's changed his mind about it because it's too rough a ride and not a flat ride. I asked him who was gonna tell her, and he said, "Well, I told her we couldn't do it until tomorrow, so I bought myself a day." He smiled, and literally ran out of the room. What a baby! So I told Bailey when she got back that he changed his mind, but she's going to pretend that I didn't tell her and really play it up tomorrow and be really excited about the ride on the tram . . . just so he has to tell her. Haha!! This will be fun.

Brian from the documentary team called Bailey today and told her that Patrick Dempsey called again to ask about her. He also said that he would bring him over Memorial Day weekend to meet her. She's all excited . . . and so are all the nurses.

We got to meet the race car drivers who received Bailey's and Marissa's birdhouses - Marissa's went to Jeff Bucknum and Bailey's went to Mishael Abbott. That was fun. There were about 9 drivers that showed up tonight in the atrium to hand out autographs, hats, posters etc., to the kids. They were, of course, all very nice. It was a good time.

Marissa went home tonight after spending two nights with us. She cried and told us she'd miss us, but I think we're both doing a little better at the good-byes. It's still hard, but hopefully we'll be home soon.

I hear it's going to be near 90 tomorrow. There are some advantages to being stuck inside!

Talk to you soon.
Love, Angie

Tuesday, May 10, 2005

Scabs and PIC Line Cause a Little Trouble

Bailey had kind of a rough day. Dr. T came up for her dressing change and took off some scabs around her canulas to expose a little bit of "goo", as the technical term is around here. The scabs were acting as a cap over the skin and weren't allowing the cleanser to clean the site. Hopefully it will clear up now that the hydrogen peroxide and cleanser can get down in there. He wanted to remove more, but Bailey wouldn't have any of it. She was so scared. He's such a sensitive guy - I asked him if he was going to remove ones that he was investigating a few minutes earlier, and he said he didn't want to upset her any more. He might do it another day after she's had some Versed.

He's on my bad side now, though! He saw some dresses that I bought Bailey over the weekend and he held them up and said, "Whose are these?" I said, "They're her mother's day present." He must have missed the "her" part because he then looks at me and says, "You can't fit in those!" Now, if you know anything about women, that's one thing you NEVER say under any circumstances and in any situation. Right, girls?! He then walks over to Marissa to talk to her for a little while and she walks away after she gets bored. He says, "I have that effect on all women." I quickly jump in with, "No! Really?! After that dress comment, I can't really understand that!" We were harassing him pretty good.

Earlier tonight, Bailey accidentally yanked on her PIC line and absolutely freaked when she thought it slid out. She did tug on it hard enough to pull one of the stitches out and the line looks like it might have pulled out a tiny bit, but no bleeding. There is a tiny balloon on the end of the PIC line that also keeps it in place, so it would be pretty tough to do some damage, I think. But, we have to show the doctors tomorrow so they can determine whether or not to re-stitch it. Maybe that will be a good time for some Versed for both of us.

Marissa and my dentist appointments went good, in case you laid awake last night wondering. I have no cavities and no need for a return visit. Yeah!!! And Marissa let them count her teeth. Yeah!!! She has 20. She wouldn't let them "brush" them, but letting them count them is huge improvement over last time.

Five race car drivers (not sure which ones) are visiting Riley tomorrow (Tues.) evening. Child Life came around and had Bailey and Marissa each paint a birdhouse for them to give to the drivers. They asked 5 kids in the hospital to paint one and Bailey and Marissa were 2 of those 5. Marissa had fun, but she got mad when she didn't like where she signed her name and tried to cover up the permanent marker. It didn't work too well, so we had to take a walk and calm down. Bailey had a great time. Her birdhouse had a black and white checkered roof. So cute! She's been busy making jewelry pretty much all day. She's got quite the little business going. I helped her with one little necklace tonight. I do have to say that I did a pretty good job! But Bailey had to deal with the clasps - I didn't have the patience for that.

Thanks, Mallery, for giving me a haircut tonight! Nothing like making house calls, huh?! You're the best!

Anita, a friend of my sister, Debbie, and her little girl, Becca, came to visit today. Becca has been on the Heart Center before and was returning today for a doctor's appointment. They might be sending her to St. Louis for a lung transplant - they don't do those here at Riley. Please keep her and her family in your prayers, too.

Just think. One morning you'll wake up and open this blog page and it will read "Bailey Gets a New Heart". Won't that be something?

Good night to all.

Monday, May 09, 2005

Happy Mother's Day!!

Happy Mother's Day, everyone! I hope every single mother out there feels special today. There's nothing like being a mother, huh?! Motherhood is filled with extremes -- extreme happiness, extreme pride, extreme worry, extreme wonder, extreme prayer, extreme confusion, extreme laughter, extreme love, extreme play, extreme homework, extreme cleaning . . . did I forget anything? Nothing quite like it - and I love it! I have the best 3 girls in the world. Did you guys know that? Each is so different in their very own special way, and each one loves me so much. I am the most blessed mom in the world!

I left here Saturday and went straight to Josie's Folk Dance celebration. 33 schools attended, and all the kids danced these international folk dances together in the middle of the floor. It was so neat! It really was a very beautiful sight. They were all having so much fun. Some professional dancers from Mexico entertained during the break and the women were all dressed in big, bright, flowy, twirly dresses and the men had their big sombreras, puffy shirts and black, jingly pants. It was really something. So colorful. We were very proud of Josie - she did a great job!

Speaking of blessed, I have to go to the dentist tomorrow. (That was sarcasm.) Marissa and I both have appointments. I cancelled them about 2 months ago, but Bailey is willing to let us go this time. Wish me luck! Marissa's only been twice, and both times were very, very . . . let's say . . . unproductive. She ordered her own lunch today at Steak N Shake for the very first time! Maybe she'll let them look at her teeth tomorrow.

Bailey had a nice weekend. She decorated a clay pot for me for Mother's Day. She talked Dr. T into doing her dressing change only once a day now . . . until Monday (tomorrow). Then he's going to actually be here for the dressing change and re-evaluate. There are some scabby things on the canulas that have been there for weeks now. They haven't fallen off by themselves, and he mentioned maybe removing them. Of course, Bailey is worried about that. But I really don't think they're on her skin - I think they're just on the canulas.

I don't know if I've mentioned this before, but Dr. T is a pilot and owns his own plane - a Bonanza single engine. Bailey finally asked him if he would give us a ride in his plane when we get out of here, and he said yes. How fun!

Hope you enjoyed the new pictures. I don't know what's in store for this week - I guess none of us really know what's in store for us, huh? I hope we all have a great week. I'll catch you all tomorrow!

Love, Angie

Sunday, May 08, 2005

Bailey, Colin and Lance (Colin's dad) taking a stroll to X-ray. Posted by Hello

Nurse Amanda reading a book to Marissa. Posted by Hello