Outside!

I couldn't get Bailey out of the room today -- she said "I like my room" -- so I ditched her and went outside myself. (She's feeling much better, by the way. I guess I'd better report that since this blog page is about her!) Oh, my gosh! It's so beautiful out there. I sat in the courtyard by the cafeteria and soaked up some sun, listened to the birds sing, and made eye contact with a squirrel that was standing on his back legs about 4 feet from me. But then when our eyes locked, I began to visualize him attacking me and giving me some kind of disease from infected scratches that would keep me from seeing Bailey . . . Ok. I know what you're thinking. I've gone psychotic in here. Not really - just trying to entertain you a little. I had a wonderful time in my 30 minutes outside. It really was beautiful sitting among the flowers. There was a little boy whose parents were pulling him in a Riley red wagon with his I.V. pole following behind - they put a little kite together and were flying it on the sidewalk. He was just having so much fun. He was fun to watch. It certainly was beautiful outside -- hope you all enjoyed it too!

Bailey now knows that I know what her surprise is. She thinks it is something happening Sunday evening. The nurses were let in on the secret today by one of the doctors who's helping plan the event, and the nurses then decided to go shopping on their lunch hour and give her a birthday present early -- a new outfit. They even got me a new outfit since they say I'm "going through all this too"! That was so sweet. I haven't had a new pair of jeans in I don't know how long. I won't tell you what size they are, but it looks like I might have lost a bit of weight since we've been here. (Don't worry! I'm eating just fine. I think it's from the first two weeks we were here.) Anyway, we now have something to wear tomorrow night. But don't tell her! She still doesn't know it's tomorrow. Dr. T said he's going to pop in around 5:00 tomorrow and tell her she needs to get ready because we're going "on a date". Then he's going to come back at 6:00 to "pick us up". I think that's about all I can safely say for now. Oh, isn't it just eating at you?! Haha!! Of course, if she gets her heart tonight, tomorrow night will be cancelled, but that would be fine too!

Today was Doctor's Day, so Bailey and I made some of those Tiger Bites I gave the recipe for on an earlier posting and set them out for the doctors . . . and nurses . . . and whoever else wanted a taste. Of course they're all gone. That's one thing I like about this place -- people really like to eat!

Todd -- I'm so sorry we missed you this morning!! Thank you for the candy - Bailey shared that with the nurses too - kept the Peppermint Patties, of course. We haven't been going to bed until about 1:00 a.m. (Bailey's choice, not mine!) so we don't see daylight until about 10:00. (And, for all you WFMS people out there, this is causing me to miss the morning show - I haven't heard it since January 27th!!! I miss Jim, Kevin and Debra!! I have figured out - well, Scott helped me - that I can pick the station up if I stick the radio in the window and turn it just right!!) Todd, please do stop in again soon - it would be great to see you!

Well, my next posting should be pretty exciting - I'll be reporting on the big surprise. One other thing I can probably safely tell you: Dr. T asked that Tom and I and Scott and Nancy go on this "date". Then he looked at me sheepishly and said "I hope that's all right. You guys seem to get along." I said "Well, it's a good thing we're all going because we'd have to duke it out to see who got to go along!" Then he lightened up and said, "Now just promise me we won't have any Jerry Springer action going on." He's something else! Laughter is a good thing!

Have a good evening/night/day (depending on when you read this). Talk to you tomorrow!

Love you, Angie

Feeling Better

Today started out as another rough day. Bailey's headache was gone but she still had the nausea and vomiting. Doctors still don't think it's medication. They think either a "bug" or just something that triggered a migraine. But she took a power nap this afternoon and felt pretty good when she woke up and has been feeling better ever since. She even had me order a pizza for dinner . . . and it stayed down, so far. Dr. T is so excited about Bailey's surprise that she doesn't know I know about and that I can't tell anyone about until it's happened. (Did that make sense?) He is just going to blow her away, and he is so excited about that. He's just acting like a kid. Even another doctor here (who will remain nameless for his/her own protection) said he's driving them nuts over this. Haha!! It will be fun. Can't wait to tell you about it. (By the way, any visitors planning to come Thursday night will probably not find us in our room. Sorry for any inconvenience.) Remember a couple weeks ago when we had a really nice, warm, sunny day and Bailey didn't feel good? Since we were not able to enjoy the sunshine, I was hoping to get out on our next warm, sunny day. Well, today was it. And, no, we didn't get out because Bailey wasn't feeling well again. But I hear tomorrow is supposed to be even better. Maybe we'll finally make it outside! Not much more going on for right now. Lots of people out on spring break and half my family (my sisters) is in Florida on spring break. So, I dug out my Florida sweatshirt from last year and am wearing it around the hospital pretending we're there too. I'm also wearing my Jamaica pin from last year and am reading a book about this couple from Toronto that bought a sailboat and took 2 years to sail down through the Carribean Islands. I see a pattern here. I think I need a tropical vacation. In due time, in due time. (By the way, to all my Jamaica buddies out there, this book is called An Embarrassment of Mangoes and there are a lot of references in it that remind me of Jamaica. You might enjoy reading it yourself. It's very light reading, and the author is Ann Vanderhoof . . . in case you might be interested.) Hope all is well with everyone out there. Learning a little more every day about the transplant process. Talked today about how it's a tightly orchestrated process to harvest the organs. Since all the donated organs from a single donor would be going to all different places, all the representative medical teams are there simply waiting in line to get their organ. The heart comes out first, then the lungs, and then the abdominal organs. It still seems all like a dream right now to me. It just seems like we've stepped out of our normal lives momentarily - which, I guess we really have. Only God knows when we'll get back to "normal" and what that "normal" will be. Thank you for all your continued prayers, comments, and cards. Because of you, we don't feel forgotten. And, because of God, we're able to continue our positive thoughts. Thank you all! Talk to you tomorrow. Love, Angie

Migraine Strikes

Poor Bailey! She woke up with a bad headache this morning and it's only gotten worse throughout the day. She's been nauseous all day long and threw up a few times. It could or could not be medication that she's taking. She hasn't eaten anything more than 3/4 of a bagel and that was early this morning. She finally fell asleep about 2 hours ago and will hopefully feel better when she wakes up. Oddly enough, she remembered (as well as I do) that she had her first migraine 2 years ago on Easter Sunday. Isn't that strange, since Easter was just yesterday? Maybe it's a seasonal/weather thing that riggered it. (I also had my first migraine when I was 10 years old. Sorry, Bailey!)

Dr. T's up to something. (Actually, I know what it is, but I can't say right now.) He came in today looking closely at the wheels on the Berlin Heart. He asked how it rolls on carpet. Strange question. Bailey, of course, looked at him like he was an alien. She was probably thinking we've been here two months and he's just now asking how it rolls? Hours later, he called me on the nurse's phone and asked if we'd taken a walk yet today. I said no, and he said, "There's carpet in the atrium. How fast can you get ready? I'll meet you down there." Bailey's Tylenol with codeine was working pretty well on her headache, so we got ready and went for a walk. Dr. T met us down there, took the controls, and rolled it a few feet on the carpet. He then said, "I think we'll be OK." And he went back to work. So, Bailey and I decided he's up to something, but we're (or at least, she's) not quite sure. (I'll let you in on the secret when the coast is clear.)

Oh, I have to go. Bailey woke up and she needs help. See you all tomorrow.

Love, Angie

Happy Easter Everyone!

Hope everyone had a good Easter. We did, but it was strange without Bailey there this morning. But the Easter Bunny found her at the hospital. The nurses even gave her her very own Easter egg hunt. They hid them around the Heart Center and she had to take a walk to gather them up. (Marissa was happy the Easter Bunny found Bailey. When she woke up this morning and discovered only two baskets - one for her and one for Josie - she was afraid he forgot Bailey.)

Bailey had a good weekend with her dad. Pretty uneventful, which is always good.

I'm in the lunch room fixing Bailey a second dinner (I LOVE to see her eat!), and it's nearly done, so I'll make this a short report tonight. But I wanted to thank you, Doris, for your nice note. I can't wait to give you a big hug! And thank you, Eden United Methodist Church (my home town church family) for the card -- it cheered both Bailey and me up to see such friendly names!

Have a good evening, everybody. Love you all!

Angie

Christmas Card Voting Schedule

Every year Riley sells Christmas cards for a fundraising project and they are designed by Riley patients. During Bailey's stay these past 2 months, she was able to submit two design entries for the cards. These entries will be on display in various places around the city and the public can vote on their favorites at these displays. The top 4 are going to be on the Christmas cards. Here is the schedule: Riley Hospital atrium - April 9 - 10:00-1:00 and 4:00-7:00 ArtsGarden - April 7 - 11:00-1:00 Castleton Mall - April 9 - 11:00-1:00 Feel free to stuff the ballot boxes! Haha!! You know you've been in the hospital too long when your daughter asks you to help her go to the restroom and you pull up a chair instead of the bedside toilet! Bailey looked at me like I was an alien. Dinner was good tonight - Bailey ordered 2 lbs. of crab legs and her dad delivered. Mmmm! It was so good. The Easter Bunny (well, I mean the "Holiday Bunny" - it's looked down upon to call it the Easter Bunny here in the hospital) came to visit this morning. Bailey got her picture taken with him and he gave her a little basket. It was cute! The funny thing, though, is that there was a note in the basket that said "Have a happy Easter, from Enterprise Rent-A-Car". So now we've re-named the Easter Bunny to the Enterprise Rent-A-Car Bunny. I was good for a few giggles. They planted purple and yellow pansies in the courtyards here. They're so pretty! But it just makes me realize that we've officially been here for a change of seasons. The trees are budding and everything is looking so green. By "everything", I mean the courtyards because we can't see anything else but brick walls and rooftops out our window. But the flowers are so pretty! I went to the kitchen today to fix Bailey a snack, and there was a very nice Amish man in there. He was opening up two small containers of chocolate ice cream from the freezer. We struck up a conversation because I wondered if he was from the same area my grandparents lived (they knew a lot of Amish people). He's actually from Shipshewana. He told me I really needed to visit the shops and flea markets up there. That would be fun! I think I might have been up there when I was a kid (wasn't I, Mom and Dad?), but I don't remember it. Anyway! He was mixing all sorts of ingredients together with the ice cream and then popped it in the microwave. He said he was making himself a chocolate milk shake. I really have no idea why that struck me as funny, but it did. Probably just another piece of evidence that we've been here too long! Haha!! I'm going home in the morning to cuddle with the rest of my family. I'll be in touch again on Sunday. Hope everyone has a good Easter weekend . . . I mean, Enterprise Rent-A-Car weekend!! Love you, Angie

Thanks To All At the Speedway!

The documentary people came back again today, but this time without the camera and microphones. They came to give Bailey an early birthday present. They gave her an iPod! with an On Stage speaker! She is soooo excited! She spent all afternoon -- and I mean "all" afternoon -- downloading songs. She now has a library of 39 songs -- a few from Keith Urban's albums, I might add. (I'm so proud!) She is so excited and is having an absolute ball. If you guys at the Speedway are reading this, thank you so much!!! I send out my hugs to all of you and hope to come visit soon. I'm just glad you gave it to her early because my gift is going to pale in comparison!! Haha!! Buddy, it was very nice to finally meet you. Thank you for all you've done for us and for the hospital with this documentary. I think it's going to do great things! That pretty much sums up the day! Music Therapy came this afternoon for Bailey's Thursday session and Anne, the music therapist, was so excited she got an iPod that they used their session to loan the program on our/Riley's laptop and download songs. Thank you, Anne. I don't think we could have got it started without you. They're starting another round of IVIG in the next couple days - just continuing to get those antibodies down. It seems to be working. They're all happy with the progress. Physical Therapy came this morning (they haven't been here all week - probably short-staffed due to spring breaks) to work with Bailey's sore arm. The swelling from the PIC line attempts last week has gone down, but she's been babying her arm so much that she could only extend it out to 90 degrees. They showed me how to stretch it out, so we're going to work on that for a while. I think that's about it. This afghan I'm working on is getting to look more like an afghan now as opposed to a scarf! For all you American Idol fans out there . . . McGraw, Out! Haha!!

The Camera Crew Visits Again

You know you've been in the hospital too long when you start stashing styrofoam trays from the hospital meals. Let me explain. These little styrofoam trays (we don't get real ones because they think we're still in isolation . . . never mind - it's really not that important) that get delivered to us come in really handy for certain craft projects or cookie projects that Bailey has been doing. So, I've been saving a few back at a time to pull out when the need arises. Scott saw me tucking one in the corner and accused me of pathetically stealing styrofoam trays from the hospital. It was quite humorous. I have to share a dream I had last night. In my dream, my boss, Sue, offered my sister, Vickie (whom I really work with in real life), a job for the same money and less hours to run her restaurant (that she really doesn't have in real life), and left me behind to handle both mine and Vickie's jobs at the office. Now, I woke up pretty disturbed because I was worried that Vickie and Sue were back at work conspiring against me, but the irony of the whole thing is, and sadly so, that Vickie is currently stuck back at the office doing both her and my jobs while Bailey and I are in the hospital. God bless you, Vickie!! I love you and miss you, and owe you BIG!! The documentary crew came back today to catch up on everything. They interviewed Bailey and filmed her playing the keyboard (they got Smoke on the Water on film! Haha!) They also asked her about the financial agreement they heard she has with Dr. T (you know, he gets a cut from the money she makes from her dad with the nasty medicine), and by the end of the interview, she ends up making money off of Brian, the guy doing the interview, by playing the keyboard! Dr. T found out, and wants a cut of that profit too. These people are nuts. Speaking of Dr. T, he's "the man" again today -- big time!! His nurse practitioner ordered this new blood thinning medication today (since because of being sick over the weekend, her blood is not thin enough and, since she's at risk for clotting because of the Berlin Heart, her blood needs to be thin), and it apparently can only be given via a shot twice a day. Well, you can imagine how that went over. We chased down the nurse practitioner to try to gain some sympathy, but she stood her ground and said it works quickly, which is what we need, and there's no other alternative (the coumadin that she's already on takes too long to adjust). Dr. T came in at the end of the interview with the documentary people, and said that we could just do a heparin drip (meaning, I.V. medication). She was sooooo genuinely grateful -- and so was I! (After Monday night's shot, I was wanting some medication myself for these 2-a-day shots!) Everyone cleared out of the room, and she told me she wanted to give Dr. T a hug. He came back a few minutes later to blab about something, and Bailey called him over to her and she reached up and gave him a hug and said "thank you". You could just see him melt. It was the sweetest thing I've seen since we've been here. I wanted to have a group hug myself!! . . . but I refrained. It was a fun day. Lots of laughing -- Cindy, you would have been proud! And it was good to see the camera crew again. They are always so fun and make Bailey feel quite special. Thanks guys!! Remember the sour-candy-eating contest she and Leslie had yesterday? By the end of the day today, she had everyone that came into her room eating sour "Mega Warheads" -- all the documentary guys, Dr. T, Dr. Darragh, Jennifer Riley (who was innocently visiting) -- I think it might be her new form of entertainment! Hope all is well with everyone out there! Talk to you tomorrow. Angie

Working on Week 8

Today was a good day. Not much going on. Took a walk to both gift shops -- Bailey wanted to spend some of her money that her dad's paying her for taking her nasty medicine. Since Bailey's talked Dr. T into reducing her epogen shot to once a week instead of the 3 times a week, Dr. T is now concerned about that $4 a week they (I say "they" because he has talked himself into believing he's getting a cut of Bailey's profits) are losing as a result. So he threatened to bump her back up to 3 times a week. They're having such a good time together. Bailey's nurse, Leslie, came in and brought some kind of grossly sour candy. She and Bailey were discussing the other day about which one of them could handle the sourest candy. So, in an effort to find out, Leslie and Bailey had a sour-candy-eating contest this afternoon. Leslie announces: "One, Two, Three, Go!" And they both pop the candy in their mouths and just sit there staring at each other with big round eyes! Neither one of them make a facial expression or a comment. Leslie simply says "Well, that wasn't bad at all." Bailey tosses me one, and I decide to try and follow in their footsteps. Well, I failed to do that, unless their footsteps led them directly to the trash can to dump the piece of candy that they had already spit out with much intended force into the palm of their hands! IT WAS AWFUL!!! "Not bad at all?!" They're crazy! They both enjoyed themselves quite heftily on my count. I, then, had to eat a row of Peeps. I'm much better now. Tom and the girls came to visit tonight. Rissy looked so cute in her little capri pants, and Josie is growing like a weed. It's only been 2 days since I've seen them, but it seems like a week already. So this is week 8 (54 days to be exact). I heard that Mimi Pearce said hello to Bailey on the radio today and mentioned that she'd been in here 54 days. I thought I was the only one counting! We calculated this morning, and I've seen (and Bailey, of course, has endured) nearly 100 dressing changes. That is a lot of dressing changes. Hope all is going well at R&L - I miss you guys! Hope all is well at First Christian Church in Shelbyville - I miss you guys too! Bailey's birthday is coming up (April 3 -- 13 years old, can you believe it?!) and we're trying to plan a small party. It's kind of strange since it's quite possible it will be postponed if her heart comes in before then. But we'll just "go with the flow". Her birthdays have always been more of milestones for us than just simple birthday celebrations. And to think that 13 years ago we were here for a month after she was born. It's a little overwhelming to think about the full circle that we've come. Maybe she'll get her heart on her birthday. Wouldn't THAT be cool! I need to go. Pizza will be here any minute. Haha!! Talk to you tomorrow. Angie

Continuing to Feel Much Better

I think we've been here too long -- Bailey taught me how to play Poker today (Scott taught her over the weekend) and now we're watching Orange County Chopper. I'm a little concerned . . .

Bailey's continuing to feel much better. Her left arm is still swollen and really sore from the failed attempts to put her PIC line in, but they're saying it will get better as the swelling goes down.

We had a lot of fun with occupational therapy and Child Life today (listen to me -- I'm saying "we" had fun. I guess it is Bailey's therapy!). Occupational therapy came in and brought ingredients to make treats -- butterscotch haystacks and tiger snacks. Oh my! They're delicious. I think everyone knows how to make butterscotch haystacks, so I thought I'd share the recipe for the tiger snacks:

Tiger Bites:
1 10-oz. pkg regular marshmallows (or 4 cups miniature)
1/4 c. margarine
1/3 c. peanut butter
7 1/2 c. (or 1 10-oz. box) Frosted Flakes

In a 4-quart microwavable bowl melt marshmallows and margarine on high for 3 minutes, stirring halfway through the cooking. Stir in peanut butter until smooth. Add and stir in Frosted Flakes until well coated. Using a buttered spatula scrape mixture from bowl onto waxed paper. Let cool and break into bite sized pieces.

**********

Then Child Life came in and Bailey made a mask and a little puppy out of cast material. I didn't ask where they got the cast material because I didn't want to incriminate them, but I think they stole them from the E.R.

This IVIG stuff (to lower Bailey's antibodies to lessen the rejection of a new heart) must be working really well, because we heard twice today from two different people that "hopefully we'll get things moving here pretty soon". Colin came to visit again today and we were talking about how holidays result in lots of donors due to all the traveling and, therefore, accidents on the roads. I never quite thought of it that way. Maybe that's what they mean by "getting things moving pretty soon" since Easter's coming up. That's really tough to think about. Please continue to pray for the donor's family.

An interesting comment made today by the infectious disease doctor (the sister of the guy at the Speedway responsible for putting the documentary together): I asked how the documentary was going, and she said really good but it's going to be tough to get across how difficult this whole process of the Berlin Heart is because Bailey and Dr. T have made it look so easy. I can't say I'm sorry for that! She also said that Patrick Dempsey has agreed to narrate the documentary. I'm not really sure who that is, but Bailey is pretty excited. She said he was in "Sweet Home Alabama" and the new series "Gray's Anatomy".

Lara - it was good to hear your message today! Unfortunately, our phone ringer wasn't working (Scott called 5 times today and it never rang once), but we have a new ringer now. Please try to call again!! I still miss you!

Good night, everyone. I'll talk to you tomorrow.

Angie

Fever's Gone

Bailey still didn't feel too good yesterday, but her fever went away mid-afternoon, and never came back again. She's feeling back to normal! Dr. T thinks it was the central line going bad that gave her a fever and that's why it went away so fast after they took the line out. So she's being treated with a high-powered antibiotic to get rid of any bacteria. I focused so much on all the stress Friday, that I forgot to report the most exciting thing that happened Friday morning! The new Chief of Police of IPD visited Bailey and appointed her Honorary Chief of Police for the Day. (Dr. T wants her to "not use it yet and save it up" for the next time he gets a ticket. It's all about him!) She received a framed certificate, an "Honorary Chief of Police" IPD T-shirt with her name on it, a cool sports bag, and a brass IPD paperweight. She was so excited! It was really neat. I knew he was coming but it was supposed to be a secret to Bailey, so I was giving her hints and then Tom came in and added to the hints and, by the time he arrived, we had her believing it was going to be Bozo the Clown! She was pleasantly surprised.

I hope you enjoy the pictures I posted over the weekend. I finally figured out how to do it! It's taken many weeks. I just bought myself a digital camera back in November and found that our computer at home wasn't updated enough to run the software package it came with. So I had to "take the long way around the barn", but it worked!

The girls and I brought back eggs tonight for Bailey and the girls to color for Easter, so that kept us all busy for a while!

Hope you all had a good weekend. We did!!

Angie

Spa day for Bailey -- haircut and highlights, manicure, pedicure and make-up 

Crocheting in the atrium with nurse Amanda (left) and the Berlin Heart (middle) 

Bailey doubling up with occupational therapist (left) and music therapist Ann (right) 

Sisters Josie and Marissa 

Bailey with F16 pilots from Terre Haute. 

Bailey with her best friend Paisley. 

Bailey being appointed Honorary Chief for the Day by IPD's new Chief of Police. 

Bailey and her new friend Corbin. 

Bailey's little friend Qudrat (from Afghanistan) 

A surprise morning message left by Bailey's night nurse Dave. 

Bailey and nurse Leslie (pretending Bailey was her dollie!) 

Bailey with cousins Cortney and Tyler before surgery. 

Bailey with cousins Cortney and Tyler before surgery. 

Flowers sent to Bailey by her best friend, Paisley, before her surgery. 

Bailey's slumber party on the Heart Center (L-R: cousin Erica, sister Josie, cousin Melyn, nurse Nancy, and Bailey) 

Dr. Turrentine, Bailey's surgeon, and the one responsible for getting the Berlin Heart over here. 

Bailey's first walk after receiving her Berlin Heart. 

Josie, Erica and Melyn watching video that Brian (the producer of the documentary) filmed the night of the slumber party. 

Me (mom) and Bailey 

The documentary camera crew filming an echo (L-R: Dr. Darragh, nurse Beth (the best nurse in the world!), and Dr. T) 

Bailey and nurse Connie in ICU shortly after surgery to receive her Berlin Heart. 

Scott and Nancy posing with the doctor (middle) who brought the Berlin Heart over for Bailey from Germany 

Bailey at the hospital awaiting surgery - 01-30-05 

Beautiful Outside - Kind of Crummy In Here

Kind of a crummy day for Bailey today. She got sick during the night last night and ran a pretty high fever this morning. Since she's at risk for infection, the surgeons got on the ball right away doing all sorts of labs and cultures. They inspected her VAD site and it's looking really good. They then decided to take out her central line in her right shoulder and replace it with a PIC line in one of her arms. (A PIC line is like an I.V., but it has a catheter that they feed in a vein up her arm around a "corner" and into a central location in her chest area.) To prepare for that, she couldn't have anything to eat or drink, and slept most of the morning since she didn't feel well. The transport team came up around 1:00 and "attempted" to put a PIC line in. They tried twice on both of her arms. She was well sedated with Versed, but she was in a lot of pain. They had a hard time finding her veins and when they did they kept collapsing, so the transport team gave up, and they decided to send her to I.R. (intervention readiology, or something like that) to have one put in under X-ray. I really wish they would have just started with that. They really knew what they were doing (not that the transport team didn't, they just had bad luck). They used a lot smaller tube to poke with and had the equipment to alleviate all the guess work -- an ultrasound to find a vein and X-ray to feed the line in the proper position in the veins. Poor little thing was in a lot of pain again (and her upper arm was swollen from the failed attempts earlier in the day), but they were very quick and gentle as possible. She is continuing to spike a fever every 6 hours or so, but she was able to eat some cereal this evening. Dr. T felt really bad about Bailey having to go through all this today. He was trying to tell her that it won't hurt any more than an I.V. hurts. And it was making sense to us. But after we returned to our room from I.R., Bailey simply says, "I.V., my butt." She's so glad to have everything done (they even took out her central line - just a few snips of stitches) but exhausted from the stress of the day. She's asleep already again. I got a lot accomplished on the afghan I'm knitting! I hear it was a beautiful day outside today - in the 60's and sunshine. Hope you all got to enjoy it! Hopefully we'll be able to take a stroll outside on the next day like today. I'm going home in the morning. I'll talk to you all on Sunday evening! Have a good weekend, everyone. Angie

Happy St. Patrick's Day!

Hope everyone had a good St. Patrick's Day. Bailey and I attended a party in the atrium for the kids. Had a fun time, but Bailey wanted to leave in the middle of it - she was getting some sore muscles. She's been in pain the rest of the day. She seems to have a kink in her shoulder, maybe from sleeping on it funny, and a muscle in her ribs has been acting up today. She's been pretty miserable this afternoon and evening. In fact, she's already asleep! I have to watch Fresh Prince all by myself. Happy March Madness to all you basketball freaks out there. I'm not one of you, but I can appreciate the excitement in the air. Before Bailey started feeling bad today, Dr. T walked in to check on her. I've noticed the last couple days that he's been putting a mask on when he comes in. Finally, Bailey noticed and asked him why he wears a mask when he comes in her room. He said, "Because I have a cold." She said, "Didn't you see the sign on my door?!" She was giving him grief because ever since they've taken away her isolation we've had a sign on the door that says "Do not come in if you are sick." I think she's gonna do just fine with our restrictions when she gets home. Anyway, they went back and forth, he pouted a minute, grabbed a brownie from our snack cabinet (which he discovered last weekend), and left. Bailey's getting another round (4 days) of IVIG to decrease her antibodies which will broaden her window of donor matches. She got a round last week and they said her antibodies "dramatically decreased", which is good! So they're doing another round. Possible reactions to this treatment is low blood pressure, fever, chills, hives, etc., but she didn't have a problem at all last week, so we're hoping that continues. I haven't said this in a while, but thank you so much to all of you for your prayers, cards, gifts, donations, and good thoughts. We truly appreciate each and every one of you!! Love to all, Angie (Hey, R&L, I miss you all!)

This Computer Is Nuts!

I was just in the middle of posting a message when my entry just disappeared. So, I'll try it again:

Today was a good day. Bailey is making good progress in her school work. We finished Bailey's lab and, no, there were no explosions. Everyone on the Heart Center is safe!

Bailey has been getting 3 shots a week of epogen (to boost her blood count) and it's horrible - she hates those. And it's always such a big ordeal. So, when Dr. T popped in today, Bailey cornered him and asked if there was any other form that she could get that medication, like a pill or I.V. After a long discussion between the two of them (and it was so funny - it was like listening to a negotiation between 2 business people), he "agreed " that she only needed to have 1 shot a week. Bailey was so excited! But then Dr. T became concerned about the loss of money she (and he, since he has talked himself into getting a cut!) would incur from her dad since, as part of his plan to help her through taking the nasty medicine by paying her, she was getting $2 per shot. Dr. T came up with a solution - "Ok. Let's just go down to once a week and not tell your dad." Bailey, of course, agreed. Haha!!

Did you guys see the news? The poor little Afghanistan boy, Qudrat, can't go home for a while because he and his dad and the interpreter were exposed to chicken pox yesterday. They were all 3 given vaccines which should make it not as bad if they get it, but they are not allowed to leave the country until the incubation period is over or they are over the illness, if they get it. That's too bad. But at least they got to move to the Ronald McDonald house today. We'll miss him around here. He is so cute and personable.

Bailey's waiting to check her email, so I'd better get off of here. She has given me 15 minutes, and they are up.

Hope all is well with everyone out there!

Love, Angie

Not Much Going On Today

A little on the slow side today. Not much happening. Bailey's having a good time learning the blues on the keyboard. Dr. T and Dr. Gujohnson (or something like that) popped in and noticed how long Bailey's toes are. Dr. Gujohnson (who has probably said 10 words to us the whole time we've been here - he's really really nice, just quiet and serious) made a joke! He told Bailey that if she stood on her tippy toes she'd be 6 feet tall. We had a good time over that. We've had 3 different doctors pop in this evening and ask if Bailey's had the chicken pox. Finally, we asked what's up, and apparently one of the resident doctors in cardiology was diagnosed with chicken pox today and they're going room-to-room questioning the patients as to whether or not their children have had the chicken pox and whether or not they've been innoculated. I think they've got a small mess on their hands. But they're all relieved that Bailey has had them before. Bailey was working on a science lab project (eliptical orbits) and Dr. T said, "Oh, if you can get some . . . [and he realed off a few chemical names] . . . I can show you how to make a little bomb. It's really cool. You can scare the night nurses." I think maybe we've been here too long. Haha!! Well, that's pretty much it for today. See? I told you it was slow. I'll talk to you tomorrow! Angie

Don't Cry Over Spilled Milk!

What a fun day! After Bailey's schoolwork, we were able to go down to the atrium for a painting party. They hung a tarp down from the 2nd floor balcony, and the kids took syringes filled with paint and squirted them on the tarp. It was so fun! But Bailey nearly missed. She came within inches of hitting the stuffed Nemo sitting on the 2nd floor! Then we walked to the library (she even pushed the Berlin Heart herself - it's heavy!) where she did some research on England for a report in social studies. When we returned to Bailey's room, we then had some special visitors. And, Corbin, it was soooo nice to meet you! Bailey really enjoyed your company, and we can't wait to see your farm. Hope to see you again real soon. Then, we got to meet another transplant patient - Taryn is a 20 -year old gymnastics coach from Purdue. She came to visit with her boyfriend, and gave us lots of insight as to what we might expect. She's such a sweetheart, and Bailey really enjoyed meeting with her. We have her phone number and she told us to call whenever we have any other questions or just to talk. Scott ran into Dr. Darragh on his way up this evening, and he said Bailey's antibodies went down. (That's good - that means she's less likely to reject her new heart.) However, Colin and Taryn have both gone through several bouts of rejection, and we've been told we'll go through it too. Most of the time it will just mean a medication adjustment, but, of course, there are different levels of rejection. Colin is just getting through "major" rejection and Taryn said she goes through it about once a year. It used to upset her and she'd cry for hours, but now she's beginning to get used to it. (She was transplanted when she was 12.) It sounds like Qudrat (the little Afghanistan boy) is moving to the Ronald McDonald House tomorrow. He's doing great!! He had his surgery just one week ago. Bailey just spilled milk all over her bed. Gotta go! Angie

Ready for Another Week

Another good weekend! Bailey had a good weekend with her dad and Nancy, and I enjoyed my stay at home with the rest of my family. Tom's planning a surprise for Bailey when she comes home, so I helped work on that a little. Also did some laundry. Tom's doing a great job at home taking care of the house and the girls and never complains about anything. I really am proud of him taking on an additional role in our family and doing a wonderful job! I love you, Sweetie!! Bailey wanted me to bring her guitar in from home, so I brought that back with me and also threw in my mandolin - haven't played it in forever, but now's a good time to pick it up again. Maybe Bailey and I can learn a little bluegrass together. Yee-haw!! Another transplant patient is going to come visit us tomorrow evening - she was transplanted as a teen and now coaches gymnastics at Purdue. She wasn't born with a heart defect but somehow was attacked by a virus which pretty much ruined her heart. So, I hear she went through quite a shock and depression after her transplant, but I really don't expect Bailey to go through anything like that since she's lived with her heart defect her entire life. Some of the major changes we'll be living with after transplant is eating a heart-healthy diet (which will be good for all of us) of low sodium, low cholesterol, low fat, etc. So, I won't be opening nearly as many cans and we won't be eating at nearly as many fast food places. I stopped in Borders today to pick up 3 heart-healthy cookbooks. Can you believe I even found The Healthy Heart Cookbook for Dummies?! Right up my alley. (And, Jim and Susie, it was so good to run into you guys! I miss you all and everyone at church - can't wait to get back!) She'll also be taking medication to decrease her immune system to help alleviate rejection of her new heart, which also means she'll get sick easier. So, we'll be going through hand sanitizer like crazy, and using other precautions to guard against illness. In essence, they've made it very clear that a heart trasplant is not a cure - it's a treatment. I'm beginning to understand that. I'm glad Bailey is anxious to meet this girl from Purdue - I think it will be good for her to get a girl's perspective. And a gymnast even - for those of you who don't know, Bailey was an excellent gymnast before she quit last April due to her heart problems. She was doing a back handspring on the beam, and a back tuck on the floor. We're hoping she'll be able to pick it back up again. But we're not on that low-sodium diet yet! She requested I pick up pickles and buttered popcorn over the weekend and, of course, I delivered! Well, I just found out she didn't get her math homework done over the weekend, so I've gotta go. I need crack the whip! Have a good evening, everyone! Love to all, Angie

43 Days - But Who's Counting?

Not much going on today -- dressing change, school, physical therapy, occupational therapy, child life therapy, homework, etc. Bailey's nurse, Amy, brought us in homemade salmon patties and macaroni and cheese. The salmon patties were made from salmon that her husband caught in northern Michigan. It was very good! Dr. T. stopped in and was complaining that Bailey was eating "high on the hog", because he just had pretzels for lunch. And Bailey's night nurse, Angie, brought us a movie to watch tonight, The Little Rascals. Really, not much more to report. It was a pretty uneventful day - and there's nothing at all wrong with that! I'm going home in the morning to see the rest of my family! I'll talk to you all again Sunday evening. Have a great weekend! Angie

Scott Gets Blindsided!

Bailey woke up this morning to a little surprise -- her night nurse, Dave, left a message in her bedside toilet. She lifted the lid to find "Good Morning - Dave" and a smiley face. That got our day off to a good start and it continued throughout the day. Continuing with school work - she's not mad at me anymore. Through a friend at work, Tom was able to get Bailey an official Ice jersey signed by all the players on the team. It's really neat! And a few days ago, Bailey's Aunt Cindy and Uncle Tim and Craig delivered a basketball signed by I.U.'s Mike Davis and a picture of the team signed by D.J. White. And, Debi, Bailey received your cool surprise today! (a really nice frameable picture of Keith Urban) We both were oohing and aahing over that! Haha! Dr. T came in today giving her grief about all the celebrity stuff she has. I told him we were going to build some shelves in her room to hold all the stuff. He then started snooping around in the cabinets and happened upon our food stash. He was supposed to come back for a chocolate chip cookie, but hasn't made it back yet. It's still early - he doesn't go home until late. One night he popped in on us at 1:00 in the morning - scared our night nurse to death because he was trying to be quiet while checking her I.V. He turns around and there's Dr. T. Haha! We were talking about Bailey's birthday coming up. He said she couldn't have her birthday then because he was going to be out of town - then he smiled and said, "No, I'm not leaving town until I get you taken care of." I just can't tell you guys how he's such a nice guy - he really cares for his patients. I think he makes every patient feel like they're his favorite. We are very well taken care of here. Bailey returned the favor to her night nurse, Dave, and stuck a Tootsie Roll in her bedside toilet and pushed the nurse's call button for him to come and empty her toilet. He was afraid to look in! The little Afghanistan boy made it back to the Heart Center today. He's doing really well! Remember I reported Bailey having a hard time taking her nasty medicine? Well, Scott tried to help matters out and came up with this monetary arrangement for her. He wrote down all her nasty medicine on a chart and said he'd pay her $.50 or $1 (depending on the severity of the nastiness) for every time she took her meds without whining. I thought that was a very noble gesture on his part to help her get over the hump. Since then, she's had to have an epogen shot 3 times a week and that can't go in her IV - it's an actual shot in her arm. So that was added to the chart as $2 each. I believe the total is up to $41 a week now! Bailey says payday is on Saturdays. And, of course, Bailey has not had a problem taking her medicine since the chart was hung on the wall! Haha! Poor Scott! I miss you Tom, I miss you Josie, I miss you Rissy!! Good night everyone, Angie

Just Waiting

Dressing changes are going a little easier - the goopy stuff is clearing up a bit. The infectious disease doctor came in today and announced that we don't have to wear mask and gloves anymore! I was afraid to take mine off. I've lived in mask and gloves for over 5 weeks (you would be amazed at how fast I'm typing right now!). Then we (me, Bailey and her nurse Leslie) just let Scott and then Tom and then Nancy come in all "suited up" in mask and gloves and just looked at them to see if they noticed. It took Scott the longest to figure it out - in fact, he didn't figure it out - we had to tell him. It will be strange to sleep without a mask tonight. My bed is by the window and when it gets cold outside, the window gets cold. The mask helped keep me warm on many a night! I'm still using hand sanitizer like crazy and not smooching all over Bailey - although it's hard to keep from doing that. (Except for right now, though. She's mad at me because I made her do some homework tonight. Maybe she'll forgive me after a good night's sleep.) Had a meeting today to learn more about the transplant process. Pretty amazing stuff. Also had a meeting to learn more about the financial end of this process - wow! That was eye-opening. Bailey has built up some antibodies because of blood trasfusions she's been given in the past, so they're giving her IVIG to lower her antibodies to cut down on the rejection factor after transplant. Apparently it's quite common to get shaky or the hives or some other reactions, but Bailey did just fine with it. They'll give that to her for 4 days. Also, that should allow a wider range of donor matches - we learned today that they already turned down a heart over the weekend because the match wasn't good enough. That just kind of makes us realize that it really could be any time - only God knows. It's really incredible to watch this whole thing with Bailey's heart evolve and know that it's happening exactly as God has planned. Think about it too long and it gets pretty confusing. It's just comforting to know that God is in control of the situation, and we continue to be truly blessed. Hope all is well with everyone out there! I know there are people reading this who we have never met, and just know that we thank you for your prayers too. Hugs to everyone, Angie

First Teen Movie Night

Bailey attended her first Teen Movie Night tonight in he surgery waiting area. Our nurse had to go with us since the Berlin Heart has to be accompanied by a medical person at all times outside of the room. It was kind of funny though. There were 2 boys and Bailey, and the first thing they did was vote on what movie to watch. The choices were a few "chick movies" and "Flight of the Phoenix". Bailey was out-voted 2 to 1 for "Flight of the Phoenix". The boys ended up leaving before the movie was over - one wasn't feeling good and the other found something better to do. And then, they announced a Code Blue in the Heart Center, so we had to go back to the Heart Center so Bailey's nurse could help out with extra hands. (We heard the Code Blue patient was sent to ICU and doing better. There's a certain unusual quietness on the floor now - it's a strange feeling.) Anyway, we had fun at Teen Movie Night. The battery on the Berlin Heart is only good for about 45 minutes, but we found a place to "plug in" so we were set. We got to take the movie back to our room with us and we were able to see the end of the movie. And it was a good movie - kind of weird characters, but it was good. Music Therapy came to visit today. Bailey was playing "Smoke on the Water" for them when Dr. T's nurse walked in. She paged Dr. T and when he called back, she held the phone up for Bailey to play it again. Then Dr. T, who was in ICU, asked in the background if anyone wanted to hear Bailey Hunsberger play "Smoke on the Water" and he had her play it again, but this time on the speaker phone. It was a good laugh! Did you all see Dr. T and Dr. Darragh on the news tonight? They were the 2 sitting in the middle at the press conference talking about the little Afghanistan boy. He, by the way, did very well in surgery today. They were all very pleased. Bailey had a really tough dressing change today. Her sites are seeping a little so they're watching it closely for infection. It was pretty painful cleaning off all the goop. I felt so bad for her. She's such a good patient. We cried together after it was over. Oh, time for another dressing change. I'll catch you all later. Angie

A Slow Day Today

Today didn't seem quite as busy as a normal weekday. I think it's because of spring breaks. We finally got Bailey's science and social studies homework from the last six weeks over the weekend, so now we're beginning work on catching up with school. Colin, the transplant kid we met last week, popped in again today. He and his family are so nice. It's incredible how much he and Bailey have in common - not only their medical history but also their likes and dislikes. They both love crab from Joe's Crab Shack; they both like to pick at themselves (like dry skin, lips, etc.); X-Box games; etc. He saw Bailey's birdhouse she build last week and said "I have about 20 of those at home." He's had about 25 surgeries in his lifetime. They gave us their phone number and they want to be called when Bailey gets her heart. We come away so encouraged after talking with them. We made another 10:00 p.m. run to McDonalds for Apple Dippers - Bailey walked with me this time. She's even standing up straighter when she walks now. She still just seems to be doing better every day. I'm so proud of her. We are truly blessed. Thank you to all of you who want to visit but haven't because of sickness. We really can't afford Bailey getting sick since a heart could come at any time. I also found out that a heart has to be transplanted within 6 hours of being taken from the donor. Wow! That's incredibly fast. They say we'll get a call any time of the day or night saying they found a possible match and they'll take Bailey to surgery where we'll wait on another call after final inspection of the heart saying yes or no to prep her for surgery. What a trip that will be, huh? Colin's dad said transplant surgery only takes 4 or 5 hours. He tells us that going through these last 6 weeks is the hardest part - it only gets easier from here. That's hard to imagine, but I'm thinking positive about it! Well, I don't know about Bailey, but I'm ready for bed! We'll, of course, talk to you tomorrow night. And while you're saying a prayer for Bailey, please also pray for the donor's family - I hope we never find ourselves in their position. Love, Angie

A Good Weekend

Bailey had a good weekend. She had a nurse last night though that she's never had before and I guess it didn't go too well. I hear she woke Bailey up throughout the night and did her dressing change at 12:30 in the morning (it's supposed to be done at 9:00 at night) and she was too rough and caused Bailey unnecessary pain! Then, there's this new rounding doctor that comes in the morning at 7:30 and wakes her up just to listen to her heart. I guess Bailey just had enough because when I returned from my weekend at home, I was met at the door with an explanation of new plans. There's a sign on her door now that says "Please don't wake me up for morning checks - I need my beauty sleep" (a result of one of Bailey's favorite nurses coming to her rescue); I am now going to be taught how to do her dressing change (also encouraged by Dr. T) so she doesn't have to risk another "rough" change (here's my chance to be the nurse I always thought I wanted to be); and we are encouraged to speak up if Bailey wants another nurse (although we've not had any problem with the nurses at all until last night). I had a long talk with the charge nurse tonight - I think they were worried we were having a bad experience here. I fessed up about how I was worried to leave ICU and come to the Heart Center because I thought we might not get the same quality care, but we quickly realized that was't true - these nurses up here have taken incredibly good care of Bailey (and us) and any doubt I ever had has gone quickly by the wayside. I think we're all good now. So, after that "dust settled", I got settled back into my second home here at the hospital. I quickly notice that Scott rearranged things this weekend because I couldn't find stuff I was looking for. I was lost! He must have known what I was thinking because he called and explained why he had to move things around. Although I miss Bailey dearly on the weekends, I am beginning to relax more and more at home. I was still sleeping at 9:30 this morning (!!) when I was woken up by the sweetest little voice: "Mommy, do you want to play Hungry Hungry Hippo with me?" (Thanks, Diane! Haha!!) Of course, I wanted nothing more than to play Hungry Hungry Hippo with little Riss. She beat me every single time - and I was trying! Tom and I were supposed to have a date night last night to celebrate his belated birthday, but he let me take a nap and I slept for 2 1/2 hours - right into our date night. But we had a good time watching a Black Jack tournament on TV and eating ham sandwiches. Not the date night I had envisioned, but very nice nonetheless. Hope all is well with everyone! And, Tom Hayden, it's good to hear from you!! Climbed any trees lately? Haha! Love, Angie

Officially Listed This Morning

We woke up to the news that they listed Bailey for a trasplant this morning. So, the waiting begins. Please don't think I'm awful, but in a very bizarre way, there's a kind of excitement about the whole looking-for-a-heart process. Now, before you shut down your computer, let me go on. Last night Bailey's night nurse said he had a transplant patient across the hall who was in for an overnight stay and asked Bailey if she wanted to talk to him. Amazingly enough, she said yes. So, Colin and his family (mom, dad and sis) came over last night at 11:30 (yeah, I used to go to bed at 9 pm, but Bailey has changed all that!) and they talked with us for a while. He's a cute kid. He's 19 and was transplanted 2 years ago. He's grown 9 inches in those 2 years. He said he used to be small and thin like Bailey but he has felt so good since his transplant. Unfortunately, he doesn't do a great job at taking his medication and that's why he was in here overnight - to get some I.V. meds to "tune him up". We really enjoyed our talk. They're a great family. Bailey and he have a lot in common too. They were both born with a defect and had heart issues off and on their entire lives; he was on a VAD (not the Berlin Heart) for 2 weeks (although he didn't do so well on it - they kept him in a drug-induced coma the whole time) hoping for his heart to recover; and then was listed for transplant. It only took him 3 days to get his heart. Dr. T turned down 5 other hearts before he found the "perfect one" for Colin. I'm sure he'll do the same for Bailey. Before Colin went home today, he dropped off a gift for Bailey and a card with his address and email address so she can contact him whenever she wants someone to talk to. He is such a neat guy. It was good for Bailey to meet him, too, because he looks like a normal stylish kid. He had his hair highlighted and spiky, wore his jeans a little baggy, and just looked like a normal "in" kind of guy. He plays basketball for fun and really is not limited in the things he can do except for no contact sports. I don't think that's up Bailey's alley anyway! WFMS came this morning to interview Bailey for the telethon they're doing for Riley in June. I hope I didn't offend Vickie Murphy (another well-known radio personality). I met her at the door and said "Isn't Mimi here?" But Vickie was very nice and Bailey liked her a lot too. Especially when she talked about Keith Urban and how she's a huge fan too!! Of course, Bailey showed her the autographed picture. Bailey was pampered like crazy this afternoon. A very nice lady named "Dusty" came and cut Bailey's hair and gave her highlights, gave her a manicure, a pedicure, styled her hair and put make-up on her. She also left behind some goodies for Bailey's make-up collection. She had so much fun! The doctors and nurses kept peeking in her window wanting to get in line for their turn. Dr. T came by and couldn't believe all the "girlie stuff" that was going on in here. He's concerned that Bailey's having so much fun that she won't want to leave the hospital! We're waiting on cousing Mallery to come spend the night with us. Bailey's already ordered homemade lasagna from her dad for dinner, and she's requested 10:00 p.m. pizza from Pappa John's. So, the night's already planned out for us! Last night about 8:00 she was hammering a birdhouse together and started painting it today. We have all sorts of stuff going on in this room. When the doctors explained to us that Bailey's situation is unprecedented, I don't think they had the carpentry and "girlie stuff" in mind too! Dinner's here, so I'll sign off now. I get to go home in the morning for the weekend, so I'll report back on Sunday evening. Hope all is well, and thank you for your continued prayers! Love, Angie

It Looks Like a Transplant

HAPPY BIRTHDAY CODY!!!! The cath went well today. Bailey tolerated the procedure very well. It took longer then we expected - about 4 hours - but they did a lot of testing things. These past 2 weeks they haven't been able to really find anything that would rule out either of our options (her own heart recovering or a transplant) and Bailey's condition isn't anything they can research since it's "unchartered territory". But the cath today showed something that makes them believe that Bailey's heart is unlikely to recover fully for long-term. So they're going to talk at their "round table" in the morning and Dr. Darragh is going to recommend a transplant. They say it could take anywhere from a few days to a few months to get a heart. They also say they haven't completely closed the door on her own heart. If we end up waiting for a month or months and they find that her heart is continuing to recover, they aren't opposed to reviewing things again. But they want to go ahead and list her so we don't miss out on any opportunities for a match. With that said, we're doing pretty good. Bailey handled the news much better than I expected. The word "transplant" has really scared her in the past but she seems OK with it now. We talked about how what the doctors don't want to happen is to send her home with her own heart and we find out down the road that her heart can't tolerate things, the pressure goes up again, and we end up back here in this situation again - or maybe worse. They are very pleased how Bailey has done on the Berlin Heart. In fact, they used the word "remarkable". But the longer she's on it, the great the risk becomes for infection or stroke, so I think they're ready to move on. And we're ready to move on as well. Just knowing which direction we're headed is a relief. We don't know a whole lot about trasplant, so now we have to get educated on that, but it's a whole lot better than a heart/lung transplant (which is where we would be if the Berlin Heart hadn't allowed her pressures to come down) and it's a whole lot better than where we were 6 weeks ago with Bailey's failing heart. So, for now, we'll just hang out here and wait on Bailey's incredible gift. Now that we see a little light at the end of the tunnel, we can focus on things to do once we're out of here - like summer vacation, riding Bailey's newly-adopted horse, getting back to gymnastics, etc. The nurses have already set up a manicure and pedicure for Bailey tomorrow afternoon. Cousin Mallery is spending the night tomorrow night. That will be fun! She always makes Bailey feel special. Thank you for your continued prayers. We love you all! Angie

It's Me, Bailey!

I just wanted to say hi to everyone! Thank you those of you who have sent me or brought me gifts or food requests. I enjoyed them all very much. Tomorrow is my cath and I was a little upset when I first found out, but I am feeling much better about it. At least it won't be anything like my surgery where I hav e to stay asleep for five days. They said it should be a short procedure so that made me feel a little better. Today I went downstairs to the Atrium where they were having this small party for Read Across America Day. Also known as Dr.Seuss's birthday. I got to make a bunch of crafts and I got a few books off the donation cart. Well, that's all for today! I'll write soon. Love, Bailey

Cath Tomorrow

They're doing a heart catheterization tomorrow (Thurs.). They're hoping to be able to make a call as to which direction we're headed - transplant or not. They are also going to cardiovert again to get Bailey's heart back into rhythm. Supposed to happen late morning, so I'll let you know what we find out. Today was a fun day. We went downstairs to the atrium to attend the "Read Across America" party. Picked up a few books, made some bookmarks, got a really cool Dr. Seuss-type hat, and picked up a little McDonalds while we were down there. Bailey finished up her entry for the Riley Christmas card contest. (Glitter all over the floor!! but it's pretty!) Voting takes place later this month - nurses are saying they're going to stuff the ballot boxes for Bailey. Haha! Thank you, Cindy, for the brownies! It was really cool to find them when we woke up. It was like Santa had been here! Bailey's had 2; Dr. T has had 2; Dr. Darragh had 1; Scott had a lot; and I won't say how many I had. Thank you!! Hope all is well with everyone out there!! Love, Angie

Happy Birthday, Tom!

HAPPY BIRTHDAY, TOM - We love you! Boy, it must have been cold outside today. I sleep next to the window, and nearly froze last night. Bailey said she got hot, so I think I'll start un-layering her bedding tonight! Dr. T stuck his head in the door today and said, "Am I your best friend Bailey? . . . Because, if I am, I'm gonna reduce some of your [nasty] medicine." Bailey said, "Oh, you're the MAN!" So he pranced around in the halls saying "I'm the man. I'm the man." They are so funny together! So, reducing medications still to see what her heart does on its own. Music therapy came around today and Bailey is going to try and write a song now. She's having a little trouble thinking of ideas, but I'm sure she'll come up with something. Maybe Keith Urban will record it. Ha!! We went on a shopping trip to the gift shop for Tom's birthday today. Bailey, of course, walked. She's doing so well and feeling really good. Last night we walked down to McDonalds for an evening snack. I'm thinking we'll be doing the same thing tonight. School work is going well, but for some reason we haven't received any instructions from the school re: science or social studies. I don't quite understand that . . . hm . . . Speaking of school work, we've got to get some homework done. I'll keep in touch! Love, Angie

Bailey Says: "Keith Urban Rocks!" (Haha!!)

What a busy day. Weekdays are always busy with all the medical people coming and going in streams. But one highlight - we got to meet Mimi Pearce. She's such a sweetheart - I really enjoyed visiting with her. And she brought Bailey an autographed picture of Keith Urban! It says, "To Bailey, [and he drew a little heart here] Keith". It's so neat. I told her I was going to scratch out "Bailey" and put "Angie" on it!! He's touring in Australia right now, so it came all the way from the other side of the world. Isn't that neat?! Thank you again, Mimi - Bailey's been showing all her doctors and nurses. If they weren't country fans before, they are now! Haha!! It must have been a busy day too for the cardiologists and surgeons. They didn't get to the echo until about 3:30 (they usually get here between 9:00 and 10:00 in the morning). A bunch of Channel 13 people were up here today interviewing the people from Afghanistan - they might have been busy with all that. Also, the Heart Center here seems full now, so I think they are busier in general. Anyway, no more delay, Bailey's pressure stayed the same for this echo too. (Her PA pressure is around 45 to 50.) They're still not ready to make a decision yet about a transplant. Now they want to take her off of some medications she's on (that help lower the PA pressure) to see if the medications are having that much affect on her or if her heart is just doing that much better after the removal of scar tissue. They say they're hoping to find something that jumps out at them to help them make a decision, but right now it's just gray area. But that's a good thing - I think - because that just means her heart is doing much better than they had anticipated. Once again, it's just a matter of time. Hi to everyone at R&L! I miss you all and look forward to coming back sometime soon. And Hi to everyone at church in Shelbyville! I miss you all too and look forward to seeing you all soon. Thank you to the kids who signed Bailey's banner. It's hanging in our room right in front of us and we see it every day! Thank you for the encouragement! We love you. In a way, I can't believe we've been here a month already. But in other ways, it seems longer. Bailey's having a difficult time suddenly taking some of her nasty-tasting medication. The nurses say that's very common for patients who have been in the hospital this long - for some reason they just get tired of tasting the nasty stuff all the time and they finally just had enough. But we've tried what we do at home with antibiotics - Junior Mints. It works wonderfully! Hopefully it will help get her over this hump. Bailey says hello to everyone. She's not ready yet to type her own message. She says she "doesn't know what to say". I told her that I don't either - I just blab on and on. She laughed at me. Have a good evening! Talk to you tomorrow. Angie