Saturday, April 30, 2005

Back From Camp

What a fun time at camp! It was a little stressful being away from Bailey for 2 1/2 days, out in the woods with only a cell phone to rely on for communication. So, in case my cell phone stopped working, I gathered two other cell phone numbers from a camp counselor and another chaperone parent and passed those numbers on to Tom. So, I think I had it covered, although I was still a little uncomfortable. Ok, I was down-right stressed Wednesday night, but I was better yesterday. But, turns out Bailey had a great time with her Dad and Nancy (as I knew she would) and all was well back here at the hospital. Camp was so nice. The weather wasn't bad at all. Very cool and overcast, but didn't really rain, and the dogwood and red bud trees were all in bloom. Sooooooooo beautiful looking across a perfectly still pond at the pink and white blossoms hanging over the glassy water. Josie and I both touched a snake. It had been captured by one of the camp counselors behind our cabin a few weeks earlier. It was a black rat snake, and only after he said they had a very sweet, calm temperament did I touch it. Josie had a great time too. I was really expecting it to be more of a bonding time with Josie since I haven't been home much at all since January, but she spent most of the time with her friends and only came to me when she needed me to hold her coat! That's fine. It was nice to see her having fun with her friends. She had a crush on one of the camp counselors - a 19 year-old from England. I didn't like that much! I was driving to camp early Wednesday morning AND I FINALLY HEARD PART OF THE WFMS MORNING SHOW!! I heard Mimi's traffic report and I squealed [to myself, since no one else was in the van with me] and said "That's my friend!" It was so fun to hear you on the radio, Mimi! I've been listening to you for many years, but it was so much more fun now. Haha! And Vickie told me you were talking about Bailey and me today being Keith Urban fans. I wish I could have heard that! I dreamed we went to the Keith Urban concert together and, Mimi, you had front row seats and Bailey and I were waaaaaaaaayyyyyyyyyyy up in the nosebleed section and could only see part of Keith's hair on the top left of his crown. I think I've lost my mind! Haha!

I came back to the hospital today to find a note on Bailey's door that said, "Mom - I'm in the classroom where we had my birthday party." She was working on a poster for the nurses. The nurses from each of the centers here at Riley were to submit a poster with the theme "Many roles, one profession . . . ". So, they put Bailey on the job. She did the whole thing herself today and I helped her with cutting and pasting. They were all very pleased with the result, so we took it up to the display area and voted . . . yes, stuffed the ballot box again. (No, we haven't heard anything about the Christmas card contest yet. I'll let you know.)

Dr. T gave Bailey a Thunderbirds hat. He gave me one too after I told him how much I liked it! He told me that they figured out a way to list her on the transplant list to where she might get a heart quicker . . . something that has to do with not having to do a crossmatch (testing Bailey's blood with the donor's) but just listing the antigens that she has so they can be compared to the donor's. I didn't really follow it . . . probably because when Dr. T was telling me about it he started mumbling and said, " . . . and we don't really need to get into the technical right now . . . because I don't really understand the medical stuff anyway." He's so funny. I don't know if he didn't want to make Bailey uncomfortable (which she sometimes gets when he talks technical) or if he really didn't need to get technical with me (which is fine because I didn't follow it anyway), but he simply said that it was good news and we might get more calls with possible matches. Hope it works! In God's time.

I want to thank everyone who has sent cards and posted comments. Those cards and comments and prayers keep us going. It's easy to feel removed from all of our friends and family right now, but you all have continued to love us and pray for us and kept us part of your lives. May God bless each and every one of you, may God bless the donor's family, and may God bless Bailey with a new heart. God has already blessed me and continues to bless me daily.

I'm not going home until Sunday, and only for the day, so I'll catch you again tomorrow night. I'll try to post more photos this weekend too!

Love you all,


Tuesday, April 26, 2005

Rowdie Comes to Visit

I was woken up this morning at 9:15 by Bailey's nurse, Amanda, whispering: "Angie, Rowdie's [the Indianapolis Indians mascot] downstairs in the atrium and he came only to see Bailey. Do you want me to wake her up?" I couldn't believe it! I thought for sure she wasn't gonna be interested in such an early visit, but I told her to just wake Bailey up and ask her. She jumped right out of bed, brushed her teeth and her hair, and was ready for Rowdie. He was cute, although we decided he's a girl. He had an awful lot of feminine body movements. "He" gave her a nice baseball jersey and signed his baseball card. That was a lot of fun! Thanks, Duke!

Last night was fun too . . . and long. Colin came over and we played Sorry, Scrabble, and Monopoly. Then I insisted on making my bed - it was 12:30. Thinking they would wrap up the night too, I turned my back and they start putting together a model of a car! We had a good time visiting. He was discharged today but hung around to play a few mean rounds of Yahtzee and Sorry before taking off. He's coming back next week for a biopsy and said he'd stop by. We'll definitely miss him, but it will be nice to get a little more sleep!

Yesterday when Dr. T was re-evaluating all of Bailey's medicines, he kept popping his head in several times reporting on each medicine they had just evaluated. Bailey finally said, "How many times are you gonna come in here today?!" So, as a result, he calls Bailey's room today instead of coming in (although he came up later to re-cycle the machine) since he "is no longer welcome". He's such a baby! The phone rang while he was in our room and I was going to just ignore it, but he decided to answer it himself by saying, "Bailey's assistant." We're supposed to get a new machine tomorrow, but haven't heard yet whether it has arrived.

No order tonight to not eat or drink, so I guess I'm taking off in the morning for 4th grade camp! It's gonna be cold and wet, but we'll have a lot of fun. Rest assured, I am leaving my cell phone number behind, Tom's cell phone number, our home number, and the camp's emergency number, in case Bailey gets a heart. It's only about a 30 minute drive, so I should be able to make it back in plenty of time should anything happen. (I'm hoping to get to bed early tonight - I have to get up at 7:15 in the morning! Haven't gotten up that early in over 3 months.)

Thanks R&L for my Administrative Assistants' Day goodie bag! So nice to be thought of. I miss everyone incredibly, and hope to be back very soon. (I know I've been saying that for a while now, but I really do mean it!)

Assuming nothing happens between now and when I return from camp, I will post again Friday night. Hope all is well with everyone, and talk to you soon.

Love, Angie

Monday, April 25, 2005

Medicines Overhauled

Today's project was to take a look at all of Bailey's medicines to see what they could get ride of, what they could reduce, etc., to maybe let the coumadin (blood thinner) work more effectively. They think some of the medicine might have been interfering with it. So, they got rid of quite a bit and rearranged others. She had to get another heprin shot tonight though, along with her epogen . . . so she got two shots! Lucky Bailey. Or should I say . . . lucky Amanda (her nurse). She was very brave, but the heprin shot was very painful.

Bailey had a nose bleed today that lasted a couple hours. Had to call in the "big wigs" to tell her to shove cotton up her nose and apply pressure. She did, and it worked. Nose bleeds while on a blood thinner can be a little tricky, but still nothing really to alarm anyone -- except Marissa. She whispered to me, "Mommy, I think I'm gonna puke if I look at Bailey right now." Haha!! She was so cute. I guess she doesn't like the sight of blood. Marissa spent the day with us and was such a good little girl, again. Although she did enjoy messing with Aunt Vickie when she came to visit. Sorry Vickie!

Colin was given the OK to move about the hospital this afternoon. He went with us when we walked down to X-ray and then to the library, so Bailey got to visit with him finally. He's not getting discharged until at least tomorrow, so he's coming down tonight to play some games and give Bailey a little grief over whatever he chooses. They have fun bantering each other.

Continuing to hack away at homework. We're down in the library right now while Bailey types up a quick writing assignment. Then back upstairs for math, science and social studies. Scott must have seen my blog posting from yesterday because he called this afternoon and said, "I didn't know Bailey had any homework this weekend!" Seems Bailey might have been a little misleading. Hm. Those teens! Either that, or she's got her dad wrapped around her little finger. Haha!

Geez. I don't know where the day went. We've been busy all day - can't believe it's evening already. They finally filled the water back up in the atrium over the weekend. They drained it just right when we got here back in January and it's been empty ever since. So glad to hear the sound of a fountain. And they started the fire out in the courtyard also. I love the sound of water fountains and the peacefulness of a fire at night. So I'm happy!

Bailey's got more energy than ever. She's pushing the Berlin Heart around by herself now. Hasn't been nauseous or a headache in a while now either. Yeah!

Talk to you tomorrow, and please keep praying for the donor and his/her family.

Love, Angie

Sunday, April 24, 2005

Where'd Spring Go?

Had a nice weekend . . . but, boy! it's cold out there. I liked last weekend better. But had a good time at home with my girls. Tom worked, so didn't see him much. Did some "camp" shopping with Josie. Josie's going to 4th grade camp this Wednesday, and I'm signed up to go as chaperone. (Back in January when I signed up, I thought we'd be home by now.) I talked to the teacher organizing the trip and he said I could go ahead and plan to go but if I couldn't go even if it was last-minute (i.e., Bailey gets a heart), I can just call him and back out of the trip. I was glad my attending could be so wishy-washy, because I really want to go with Josie since I haven't been able to spend much time with her since January. So! This will be a good week - - either I get to go to camp with Josie for a few days and have some fun, or Bailey will get a heart which will be awesome! I'm all packed and ready to go with Josie. I'll leave the hospital Wednesday morning and return around noon on Friday . . . unless we get an emergency call while there that Bailey's getting a heart. Then, of course, we'll cut the trip short.

Marissa's spending the night with us again tonight. She has a good time doing little tasks for the nurses. She's such a good little helper! She visited Colin with me - - donning mask and gloves since he's still in strict isolation. He and Bailey still can't visit. But he said if he gets discharged tomorrow, he's going to hang out with Bailey for a while before he leaves. He's such a thoughtful kid.

Bailey had to get a heprin shot again yesterday. That's the shot that hurts pretty bad. They're still having trouble getting her blood to be as consistently thin as they want. But if that's all they're working on at the moment, I think things are pretty good! Right now, she's taking a nap. Must have been worn out today. She didn't get any homework done over the weekend, so we'll be doing that about midnight tonight, I presume.

Have a good week, everyone! Talk to you tomorrow.


Saturday, April 23, 2005

Day 85

Thank goodness, no water fights to report today.

Marissa crawled in bed with me at 9:15 this morning when Tom dropped her off. It was so nice to cuddle with her. She spent the day with us today -- helped one of the nurses, Leslie, out a bit. Leslie took her to X-ray with her and she pushed all the buttons to open the doors on the way there and back. She also helped put a little baby back in her crib. She's had a busy day! We took a trip to the gift shop, of course, and had to purchase a few goodies. She was such a good girl today . . . as she always is.

Dr. T popped in about the time the tornadoe warnings were issued. I told him he couldn't leave until after the tornadoes had passed so he could protect us and his Berlin Heart. He said, "Bailey's not going anywhere - the Berlin Heart will hold her down." (That thing weighs about 150 pounds, I hear.) And he didn't seem to be too worried about the rest of us. But he did hang around a little bit. Knowing him, he actually was worried about the thought of a tornadoe. Marissa hadn't yet talked to Dr. T as of this afternoon, despite several attempts by him in the past weeks to get her to do so. So he gave her a nickname today . . . Teller. Have you heard of Penn and Teller? They're a comedy team and I guess Teller is the guy that doesn't speak. Then, a few hours after he established the nickname, he walked through our door, looked straight at Marissa, and said, "Hello!" And she said, "Hello!" He stopped in his tracks. "Did that come out of your mouth?" Now I guess he has to call her Penn. Haha! So, they then had quite the little conversation going. When she wasn't talking to him, I told him not to worry too much about it because, if he remembered, he made Bailey cry the first 3 times he spoke to her. At least Marissa wasn't crying!

Tom brought Josie by tonight and she and Marissa are spending the night. We're having a little slumber party. We've got our beds made and are going to fix popcorn here in a minute. Colin still can't have visitors, but he and Bailey have been passing notes (delivered by the nurses, parents, or whoever they can flag down) all day long. Bailey made him a necklace. It's really cool. Very manly looking.

The plan is to switch Bailey's Berlin Heart out on Wednesday of next week. Just a new computer and big blue box - no surgery involved. I understand it's just a matter of unplugging from the old and plugging into the new. (The one she now has is going on 5000 running hours and is due for maintenance.)

I'm going home in the morning, so I'll catch you again Sunday evening. Hope everyone has a wonderful weekend! I hear it's going to be cold.

Love, Angie

Friday, April 22, 2005

More Water Fights

Boy! Today was filled with all sorts of excitement. The day started when I walked into our bathroom to take a shower and I nearly tripped over a shopping bag. In the shopping bag was a Super Splash water gun, believe it or not, from one of the doctors! The note attached said something like "Dr. T started it so we have to finish it! [Your nurse] said to aim sharply and DON'T hit the VAD!" Oh, geez! I thought the water fight was over, but I do believe it has just begun . . . and so it had. I did convince Bailey, however, to not fill it up with water but to just scare Dr. T with it. That worked well, but when he saw the water gun, he smiled a big smile and calmly walked over to pick up one of Bailey's portable toilet bowls (a clean one!) and was ready to fill it the moment Bailey shot him. So Bailey, fearful of getting dumped on, started yelling in a panic, "There's no water in it! There's no water in it!" There is never a dull moment with those two, that's for sure.

The camera crew showed up again today to get caught up. They interviewed Bailey to see what they had missed the last couple months. They interviewed me to see what were the highs and lows of our stay, etc. I told them that they were my buddies now and it would not be nice to make me cry. And Brian, the interviewer, did very well. When he saw I was beginning to lose it, he quickly went on to another question. He truly is my buddy! We got them to play a mean game of Sorry with us. That was a lot of fun. Bailey made them coasters out of the mosaic tiles, and they seemed to like those quite a bit. They're going to Japan next week to film a race and said they'd bring Bailey back something. I'm hoping they'll show up when they get back and play Bailey in poker - no beer and cigars, though. This is a children's hospital.

Just when I thought the water problems were behind us, Dr. Cox, the doctor who got Bailey the Super Splash water gun, came in and filled it with water and went after Dr. T. They somehow ended up back in our room and had it out! Water was flying everywhere. He started aiming at me and I hid behind Amanda, the nurse, in complete and utter shock! I'm the innocent mother, people!! Dr. Cox did get Dr. T pretty good. His white coat was pretty wet. And the floor was completely soaked! Believe it or not, not even a drop on the Berlin Heart. I don't know how that happened!!

Colin still isn't able to leave his room, so they started passing letters back and forth. Just before the incoming phones turned off at 9:00, they got on the phone with each other and are still playing Battleship. I'm glad they can at least communicate. Bailey offered him some Twizzlers, but he told the nurse he had to be in the mood for it and he just wasn't in the mood for it right now. Bailey accused him of being "high maintenance, dude!" It was funny.

They're having a Code Blue right now on the Heart Center. It's a strange feeling. There's not a nurse to be found outside of the huge huddle in the one room. About every 15 minutes, someone comes around and checks to make sure the rest of the patients are ok. Lots of times I think I really would like to work here as a nurse, but at times like this, I get a stomach ache at the thought. All sorts of alarms and beeps and bells going off. Yucky feeling.

Marissa gets to spend the day with us tomorrow and Josie is coming over tomorrow evening and they're both spending the night. We're going to have a little slumber party! Popcorn, movies, cookies, lots of caffeine, little sleep - what could be better?!

Oh, Brian, the documentary guy (who's buddies with Patrick Dempsey) said Patrick Dempsey called him over the weekend to see how the documentary was going and how Bailey is doing. I asked if he asked about me, but I don't think he did. Hm.

I'd better get back to the room. I'm on the computer in the kitchen since Bailey is hogging the phone and the laptop is a dial-up connection to the internet. Hope she's done playing with Colin, I'm a little bored!

Talk to you all tomorrow night!
Love you all, Angie

Thursday, April 21, 2005

Water Fight

Yep! They had a water fight today, just as I suspected. Bailey emptied the water out of Dr. T's syringe that he hung on the wall as his "lethal weapon" and filled the squirt guns that his nurse practitioner, Beth, brought in for her this morning. She was ready! Shortly after noon, Dana, Bailey's nurse, banged on our window and pointed to our door. The door creeps open and an arm reaches inside the door and feels along the wall for the syringe. Bailey shoots the arm with water. The arm disappears and reappears very soon thereafter with 2 very large syringes filled with water and Dr. T BLASTS Bailey with water!! It was like a fire hose. Her bed, shirt and hair were soaked! And to think that I lectured Bailey before-hand about shooting AWAY from the Berlin Heart. She obeyed very nicely. Dr. T, on the other hand, was standing at the door just firing away like a crazy man! As he had Bailey hunched behind a blanket shielding herself, he sneaked up on her and took away her guns; retreated back to the door; and began firing at her with her own guns. And, of course, mom had to clean up the mess!! (I had a flashback of cleaning up after the silly string fight.) So Dr. T got to claim his crown and glory in the water fight. But he asked who supplied her the water guns. She ratted out Beth and he went down the hall holding a water gun in firing position looking for Beth. She managed to avoid him the rest of the day.

He came back later to actually do a little work, and Bailey handed him a coaster made out of mosaic tile that she made for him. He looked at her like, "What's the catch?" He realized she was sincere, and he was very touched. He had her sign the back.

Colin did really well with his treatment to wipe his immune system out today. They said he'd feel really tired and sick, but he didn't at all. But they won't let Bailey and Colin be in the same room together today. They said they'd decide on a day-by-day basis as to whether they can visit at the end of the day - depending how well each of them are doing. So we'll see if he can come over tomorrow. Bailey waved to him through his window. They are so much alike - they really seem like brother and sister. It's comforting to see Bailey have a strong bond with another transpant patient. I think it will be good for both of them to have such a bright spot in their hospital experiences. I am very, very grateful for him. I hope he gets to feeling better soon so he can go back home, but it is nice to have him here.

Today's been pretty laid-back. I've been gathering heart-healthy recipes for when we get home, since my cooking skills consisted primarily of opening cans and boxes most of the time. It will be an adjustment, but it will definitely be for the better for all of us.

They did an echo on Bailey today just to see where her pressures were nearly 3 months after surgery. Turns out, they are pretty much where they were when they did her cath before they made the decision to list her. They even gave her some isopryl to increase her heart rate to 130 and her PA pressure went up, just like it did in the cath lab. So, no plans to change the course at this time. We continue to wait on a heart. Don't know how her white count is doing - they didn't test it this morning.

Kind of a funny story about the heart we almost had Monday night. They called at 7:00 pm to give the order to stop eating and drinking. After that order is given, the patient usually knows in 2 to 4 hours if it's a match or not. We went to bed at 12:30 am with still no word. Dave, Bailey's nurse, said that it's pretty unusual to not have heard anything yet, but that he would give it at least 8 hours before trying to contact the doctor. When he said that, I joked, "Dr. T is probably at home sleeping and he just forgot to call us." We found out yesterday that that was, in fact, the case! Well, partially. He was sleeping - he went to bed at 9:30 pm in case he had to stay awake throughout the night performing a transplant. But the donor organization would normally call him at the point they determine whether or not it's a match, at which time he would call us and let us know. Well, there were new people at the donor organization, and they didn't bother to call Dr. T back. He woke up on his own at 3:00 am, called the donor place to find there was no match, then called up here. I gave him a little grief today, saying that I heard he got some sleep Monday night. He was obviously irritated at the mix-up, so I didn't press it too much.

I hear it's supposed to get cold again soon. Hope everyone enjoyed the spring! I did.

Talk to you tomorrow.


Wednesday, April 20, 2005

My Birthday Today

Fun-filled day! So we didn't get a heart and that's all right. We found out that Luke, the 14-year old boy down the hall that needs a kidney and a heart, was up for this heart too. But he didn't get it either. That's ok - our time will come.

So, today is my birthday. It was so nice. Bailey told me she needed to "go somewhere" at noon and that I needed to "take a walk" for about a half hour. So, she disappeared (with her nurse, of course), and they came to get me about 45 minutes later. I was led into a conference room where Bailey was sitting at a table with an incredibly wonderful lunch for two -- lasagna, breadsticks, salad, chocolate eclaire cake, and drinks [not wine or anything!], with a flower centerpiece. It was so sweet! It was the best lunch I've ever had!! Bailey schemed with Debbie Murphy, the transplant coordinator, and Jorie, the social services lady, and they made and brought in the food, and Bailey set it all up and iced the cake. It was so heart-warming. She was so proud, and so was I. Thank you, Bailey, for the best lunch I've ever had! I love you!

Then, they decide to put Bailey back in isolation because of her white count being down really low, so they took the flowers away from us. At least they're sitting right outside our window so we can still see them. We still get to keep the fish in our room though. And, yes, he's still alive. I almost killed him, though. Last Friday, I decided to change his water and used the water from the tap. He lost his color - turned from blue/green into a grayish color - and was pretty much motionless all day. He perked up a little over the weekend, then found out yesterday that he was supposed to have distilled or sterile water, so the nurses gave me two bottles of sterile water. (Don't tell the authorities!) I changed his water again last night, and OH MY GOSH!!! he looks so much better. He's got his color back and he's swimming around and so pretty. He's so happy! I think it was a close call. Bailey was already calling me a "fish killer". I didn't appreciate that much - just because I thought I really was!

Dr. T came in today and spilled a cup of water all over the floor by Bailey's chair. Bailey says, "Oh, THAT'S real good! . . . YOU'RE cleaning that up!" And he actually got down on his hands and knees to clean it up. But, I tell you, he must be a crappy housekeeper because he cleaned up only about half of it and said, "That's good enough." So they fought a little bit more; he shoved some paper towell down the back of her shirt; and he walked out and returned with a HUGE syringe filled with fake lethal liquid something and taped it on the wall with a sign that says "*Caution* Lethal weapon, Do not touch!" One of the nurses is going to bring in a huge splash water gun and hang it up next to his "little" syringe with a sign that says "Bailey's lethal weapon". I have a feeling we'll be seeing a water fight soon.

Yesterday, some friends from my work came to see me for my birthday and brought in lunch. It was so wonderful! Thanks guys! It was so nice to see you all. I miss you all!! And tonight the rest of my family came to see me and brought presents and cake. It was a nice birthday. Didn't think back in January that I'd be celebrating it here at the hospital, but that's ok. It was wonderful!

Colin, Bailey's transplant friend she met here ealier this year, is back in the hospital with rejection again. Bailey gave him a dreamcatcher that she made and he hung it up on the ceiling above his bed. His parents left for the night, so he's down in our room right now playing poker with Bailey. I'm not sure who's winning - it's a little early yet. He's such a good guy and very sweet! His immune system is going to be wiped out tomorrow, so he's visiting while he can. Since Bailey's white count is down, they both have to wear masks when they visit, but they don't seem to mind a bit. I'm bummed he's back in the hospital, but it's nice to see him and his family again. And Bailey said, "It's nice to have a friend here."

I mentioned Bailey's back in isolation, but she's feeling fine. The sores in her mouth are a lot better today too. (I'm not sure if I mentioned those yesterday or not.) They expect her isolation to last only a few days.

I guess that does it for now. Oh! I finished the afghan I was knitting. Oh, it's nice to have that done. Now I can read a book! I figured out that I spent about 70-some hours knitting it. The next one is definitely going to be crochetted - it's a LOT faster!!

Take care, and I'll catch you tomorrow!

Love, Angie

Tuesday, April 19, 2005

It wasn't a match

It wasn't a match.

Another Order to Not Eat or Drink

The day started out entertaining. Dr. T walked in at 10:00 and Bailey wasn't awake yet - of course. I said, "Go ahead and wake her up - better you than me!" So he starts clapping his hands and saying "Wake up, sunshine! Time to wake up!" Bailey doesn't even move but musters up a growl and a "Go away!" Dr. T does his stunned-and-amazed routine for a little while. Bailey still doesn't wake up. Then he walks out the door and Bailey says, "But I still love you!" We didn't even think he heard her, so we go about our business. Later, a surgery technician comes in and says, "So, I hear you love Dr. Turrentine. He's down there telling everyone how you said you still loved him." Geez! He's such a boy. Later this afternoon, he walks silently through the door, posts a paper on our wall that says, "'GO AWAY! . . . but I still love you' Bailey Hunsberger, 18 Apr 05, 1002 hrs", and he walks silently back out the door. I guess he just wanted it documented. I think he just needs a hug.

Then, some friends of ours come to visit tonight and Julie [Norris] hands Bailey a large envelope. She looks in it and pulls out three autographed pictures of Orlando Bloom and a handwritten note from his mom. It was so cool! He wrote "For dear Bailey, Thinking of you, Be brave, Lots of love, Orlando Bloom". The note from his mom says that he's filming on a remote island when he signed this. Isn't that neat?! Orlando Bloom is Bailey's favorite movie star. (He was in Pirates of the Caribbean.) So, we had fun with that and I ran out in the hall to show her nurses, and they met me with "Dr. Turrentine just called and she has orders not to eat or drink again" [which means they're looking at a possible match and we'll find out in a "couple hours"]. So, I decided not to tell Bailey until after our visitors left because I didn't know how she would react - she was pretty upset a couple weeks ago when we had a close call. But we had a very nice visit, they left, and Bailey took the news well. She called her dad and Nancy, though, to come sit with us. So, it's now 10:01 and we still haven't heard yet whether it's a "go" or not. Luckily, Bailey had just eaten two hotdogs right before her orders to not eat or drink came, so she's not starving . . . yet. But she did mention to Dave, her night nurse, that she was hungry, and he said, "Do you want a cheeseburger? Sorry!" I think he said that because she just filled her bedside toilet and he had to empty it! Haha!!

So, now we wait. Don't know where we'll be in the next 12 hours -- could be here just waking up for the day or could be downstairs in ICU. Such a strange feeling. Kind of like getting the carpet yanked out from underneath of you. There's just no time to prepare. That would be pretty cool to get Bailey's heart for my birthday!

I'll keep you posted!

Love, Angie

Sunday, April 17, 2005

Enjoy Each Day

What a gorgeous weekend! I got to work out in my flower beds. Man! - they needed the help! Bailey had a good weekend. Her grandparents from Pennsylvania visited. She always enjoys their visits.

I just spoke with a mom of another patient here. In fact, she's the mom of the boy who has "Post Cardiac Transplant Precautions" posted on his door. Turns out, he was transplanted as an infant (he's 14 now) and he's waiting on his second one together with a kidney transplant. His antibodies are elevated, too, like Bailey's were and they tried the IVIG on him, but it's not working. They tried a few other things, but they didn't work either. The doctors here are consulting with other professionals across the country, and no one knows why these treatments aren't lowering his antibodies. We talked a few minutes about how this stuff messes with your head and emotions, and his mom simply said, "We just enjoy each day with him." So, I started crying, gave her a hug, and had to walk away. But that's the key to everyone's life. Just enjoy each and every day because we never know what the future brings for anyone.

On that note, I'll let you all go. I love you all, and hope to give you all a hug very soon.

Love, Angie

Friday, April 15, 2005

Little Qudrat Passes Away

It's just been a sad day around here. We were just playing with little Qudrat a few weeks ago while he was holding his little stuffed baseball and football. It was so sad to hear the news this morning. The whole Heart Center here was just silent all day long. There was definitely not the normal traffic in and out of our room today and not nearly as much laughing and playing. Dr. T is quite upset. He came in today with the longest face. It hurts even more to see someone else hurting. Qudrat touched a lot of lives and his purpose must have been fulfilled. We'll not forget his little happy face for quite some time.

Marissa spent the day with us again and is even spending the night now. Tom took Josie to a Pacer's game tonight and they were going to pick Marissa up after the game, but we just decided to have a slumber party. I've already got the bed laid out for her and she's cuddling with my pillow already. I have a feeling she'll be out pretty soon. Then I just have to get Bailey to sleep and I'm home free! Oh well. Only 4 more hours before that happens.

Dr. T informed us today that Bailey is getting a replacement pump next week. There's no surgery or anything involved. They're just switching out the big blue box and computer. I've been staring at this little sticker on the side of it that has the maintenance schedule on it, and it must be that time. They say they think it's just a matter of unplugging the one she has and plugging it into the new pump, but they've never done it before since Bailey's the first to be on the Berlin Heart here this long. I know I'll be a little anxious about it, but it will hopefully be very uneventful.

Sue, those are the BEST strawberries I've ever had. Thanks, Larry, for leaving them for us! You guys are the best!

I'm not sure what this computer screen is doing, but it's about to black out on me, so I'd better hurry and finish this.

I get to go home in the morning, so I'll catch up with you Sunday evening.

Have a good weekend everyone!

Love, Angie

Dr. T is back!

Dr. T's back!! All is well again. Bailey showed him her wad of cash she has stashed away, and they started literally playing tug-o-war with it. Dr. T was actually leaning over her bed reaching for her hand behind her back when he said, "Give it up! You can't win! I'm more mobile than you are!" At least they're entertaining. He loved his lava lamp. He really thought it was cool. But then he was eyeing Bailey's glitter lamp (like a lava lamp but there's little squares of glitter instead of lava floating around in there) - I told him that wasn't manly enough for a bachelor pad. I think he was disappointed. I have Bailey's picture she got taken with Reggie Miller (2 days before Christmas when we came to talk to the doctors about this whole thing) sitting next to her glitter lamp. Dr. T says, "Oh, I see Reggie made it by. Good." I said, "No, that was taken back in December." There he goes mumbling again. He said, "Oh, well never mind . . . [and it got worse and worse]." Bailey was preoccupied at the moment speaking with her nurse Beth, thank goodness. I guess he's trying to get Reggie to come and see her. I just laughed and said "You know, I actually understood every word you just mumbled." We had a good laugh over that one. Bailey made her opinion known to Dr. T about the doctor that was supposed to be checking in on her and recycling the Berlin Heart while he was in California. (We only saw him twice during Dr. T's absence.) Dr. T walks in today and Bailey says, "Boy, you really picked a good one to recycle my pump while you were gone!" I think Bailey's running this place.

Marissa gets to spend the day with us again tomorrow. We had such a good time yesterday. We played games and colored and watched movies and ate McDonalds for lunch and for dinner! Thank goodness for their salads.

There's a little boy about Bailey's age two doors down who must have just gotten a transplant. There's a sign on his door that says "Post Cardiac Transplant Precautions . . .". I wanna have that sign and I want it now!! . . . Whew!! I feel better now. Just had to let it all out.

Bailey's fish is still alive! I'm so proud.

Bailey felt great today. She woke up without nausea and without a headache! I did talk to Child Psych today about the girls not getting along too well with Bailey right now. They said they see that a lot in families of cancer patients who are in the hospital for months at a time, so they were not surprised at all that our family is experiencing the same kind of thing. She is going to look into a psychological explanation but she made me feel much better - that it's perfectly normal and will not take any time at all to return to normal once we get home. I pretty much expected that. It's just weird - our family has always been really close and its so strange and a little depressing that this is happening.

We were getting ready to go to bed last night - or this morning - at 12:30 a.m., and Bailey perks up and says, "Can we go get a Big Mac?!" Like I'm supposed to say no to that! She just reached 60 pounds again 2 nights ago! We're so excited - we celebrated a little. (She weighed in at 70 pounds when we were admitted back in January; lost 15 pounds right away after surgery from loss of all the fluid; and has been trying to work her way back up. We're getting there!)

Good night, everyone. I miss you all.

Love, Angie

P.S. - Hey, Julie [Norris]! Yes, Bailey would love to get a visit from the guitar player!

Thursday, April 14, 2005

Marissa Spends the Day With Us

Marissa spent the day with us today. She walked in about 9:00 this morning and crawled into bed with me and we cuddled together for a little while. It was sooooo nice! She's such a sweetie. She's been spending the days with her twin cousins, Emily and Lyndie, since we've been in the hospital. Thank you, Jim and Robin, for taking care of her while Tom's at work. She loves coming over - even when they fight like sisters!

Bailey woke up without a fever but with pretty bad nausea. It passed by lunch time. Due to the fever she had last night, they came in to check out her Berlin Heart sites and her PIC line site to make sure there was no sign of infection. They also did a chest X-ray and looked in her ears - all for the same reason. They didn't find anything, which is really good! It probably means it's all from the IVIG medication. So, great there's no infection, but bummer since she'll be getting the IVIG at least twice a week.

Bailey's doing great on her homework. She finally got assignments in all her classes from school, and she's been working hard on getting those done. I'm really proud of her. So she has difficulty sometimes being motivated to do homework - who doesn't?

I think I'm going to talk with the Child Psych people tomorrow about Bailey and her relationship (or lack thereof) with her sisters during her extended hospital stay. Whenever the girls visit, she clams up and pretty much snaps at them when they try to talk to her. And at the same time, Josie, at first, was overwhelmed with all the hospital stuff and didn't really know what to say to Bailey or how to act, but now that she's getting used to it, she doesn't really want to talk to Bailey for fear of getting snapped at. It's not bad, it's just obviously not the relationship they had at home. And it probably won't take any time for it to get back to normal after we get home, but it just saddens me to see them uncomfortable around each other. Tom says it might be because Bailey has me to herself all day long and gets a little territorial when the other girls show up. I just want everybody to be happy, darn it!

Dr. T is supposed to be flying in tonight. I tell ya, it's not the same around here without him to push around. Haha! We picked him up a lava lamp for his "bachelor pad". Will Smith's character in Shark Tale says every bachelor needs one, and that's the part of the movie he was watching when he tracked us down on the Hollywood Movie showing of Shark Tale last week. He said he didn't have one, so he has one now! At least we got him a blue one and not a pink one - he should be grateful.

We've been here 76 days today. Don't have any idea how much longer we'll be here. Please continue to pray for the donor and his/her family.

Catch you tomorrow!


Tuesday, April 12, 2005

Running a Fever

Had a pretty good day. Bailey woke up with a headache and nausea this morning. We now think her IVIG (I.V. medication to lower her antibodies) causes this. And they just told us this afternoon they're going to increase the frequency - couple times a week instead of once a week. Oh, that won't be fun.

We went to Teen Movie Night tonight and saw Finding Neverland. It was really good. But Bailey started running a fever during the movie. Now she's nauseous again. I just hate it when she doesn't feel good. I wish I could make her feel better.

Dr. T is due back late tomorrow evening (Wed.). Can't wait til he gets back - people are kind of cranky around here without him. I guess that probably includes us, too. Haha!

Marissa is coming to spend the day with me and Bailey tomorrow. That will be fun! It will be nice to hang out with her for the day.

Peace and joy to all. Talk to you tomorrow!


Monday, April 11, 2005

A Staff Birthday Party

Bailey had another birthday party today. This time, the staff gave her a luncheon party. It was really nice. They ordered Subway sandwiches and had an ice cream cake. They gave Bailey a Beta fish in a big glass vase with a plant sticking out the top. It's really neat! Bailey's really not supposed to have live things in her room, but they said she can have it in her room if she promises not to touch it. So guess who gets to clean the bowl?! . . . Scott!! Haha! It's really nice, though, and she likes having a pet here. She named him Li'l Bit.

We found out today that we can't text page Dr. T on the nationwide pager, so we just gave him a message when he called in today to check on Bailey. We simply said, "You're done. Come on home." Funny, he's not back yet.

Bailey's mad at me right now for making her do her math homework. We turned off the TV for this! She's sitting over on her bed with her head resting in her hand, pounding on the calculator. Yep, we're in the teen years. Haha!

I guess there really isn't much more to talk about. I guess with Dr. T out of town, things are a little slow. That's all right. We'll take slow.

Hope everyone out there had a good day today. Talk to you tomorrow!

Love you all, Angie

What a Beautiful Weekend

What a beautiful weekend! I was welcomed home by some incredibly beautiful blossoming trees. Next weekend, our weeping cherry should be in full bloom. Our daffodils and grape hyacinths were beaming in the sunshine. It was just gorgeous. The girls and I played some tennis - so now I have sore muscles - and we walked some trails at the park and played on the playground. We had a good time.

I panicked a bit last night when I couldn't get ahold of Bailey at the hospital. I kept calling and it was busy and busy and busy. Then, after 9:00, the message said the phones were turned off after 9:00. I woke up this morning and tried calling again and it was still busy. I called the Heart Center desk and no one answered the phone. When I ran to Tom with my concerns, he said to just call Scott on his cell phone. Oh. I didn't think of that. Turns out, Bailey found a Family Feud game to play on the internet and was playing it all night and all morning. Hm. I felt like an idiot. But all is well at the hospital. Scott brought Bailey's dogs to the hospital and Bailey walked outside to visit them. She really enjoyed that visit.

Dr. T called to check on Bailey over the weekend. We're going to try to text page him tomorrow with "Are you done yet?" He's not coming back until late Wednesday night. It'll be a long week!

I'm not sure if it was the close call we had Wednesday, but I had a little rougher time this weekend than I normally do. I hardly slept at all last night; and the slight panic I felt when I couldn't phone Bailey; and I was just feeling really heavy-hearted thinking that we'll be here forever. It was pretty tough. But once I walked in her room tonight, I felt better. When I'm here with her, I'm OK. But when I'm away, it's much easier for me to think about the big picture and get a little overwhelmed. I find that very strange - I would think it would be the other way around.

Well, let's see what this week brings! Hope it's a good one for everyone!!

Love, Angie

Saturday, April 09, 2005

Dr. T Left Town

After all my whining and complaining, Dr. T still left town - he'll be back Wednesday. Can you believe it? But I managed to get his pager number before he left. That gives me some comfort. He came by with his group of people earlier today to give them his last instructions. He popped in again late this afternoon before he left to assure us everything would be fine and that anyone can contact him at any time, and that he can get back very quickly if needed. He must have seen the fear in my eyes, because he patted me on the back and said we'd be fine. After he left, he called back up here to talk to our nurse. He probably just made it as far as the parking garage. I told the nurse to tell him one more thing before he hung up -- "Tell him to come back because he's been gone long enough." His message to me after accusing me of having major separation anxiety issues was "a little less caffeine and a little more tequila". I think I'll stick to the caffeine. It works just fine for me. Haha!

We went to "Lunch Buddies" today. It's a lunch every Friday for teens. We had Fazoli's and played Outburst. That was a lot of fun! Then we came back and played a mean game of Sorry. Bailey and Shondra, the Child Life specialist, ganged up on me. My own daughter! After everything I've done for her.

I'm going home in the morning to see my other family. It's going to be weird when we finally do leave here. Everyone is like family around here.

Have a good weekend everyone! Talk to you Sunday.


Thursday, April 07, 2005

A Day of Recoupment

After yesterday, today was a day of rest. Hollywood Video came to show a movie (Shark Tale) so Bailey and I went down to watch it. We're huge Will Smith fans since we watch Fresh Prince every night. (And, thanks, Scott [Andrews], but every time I see Carlton, I see you!)

Bailey got beads and necklace material for her birthday. So she started making jewelry today. I'm wearing one of her necklaces and she made a bracelet for her nurse, Amanda. But Amanda came back in the room with a pocket full of beads. Her bracelet broke and the beads scattered all over the hallway. (She just needs to tweek her skills a bit.)

After yesterday's emotional rollercoaster, Dr. T popped in to see how we were doing. Bailey wouldn't even look at him -- she later explained that she was afraid he had more bad news - "bad" being going into surgery soon. We told him how scary it was and that it caught us off-guard after just hanging out here for 2 months. He's such a sweetie. He tried to make us feel better by telling us it just wasn't the perfect heart and that the perfect heart would come and hopefully soon. The longer he talked, the lower his head fell and the more he mumbled. (He's not very good at these situations, but he tries.) He finally said, "Well, today just wasn't meant to be, and if it's not meant to be, it just isn't meant to be." Bailey and I looked at each other and just busted out laughing! He realized what he said and laughed with us. He's a good guy. He accomplished what he set out to do - make us feel better. It just wasn't exactly how he planned.

Then he told us he might be going out of town for the weekend to California for a conference and, coincidentally, the documentary team is going to be in the same area covering a race. We accused him of just going out there to party with the guys. He said he would have a nationwide pager with him and that if a heart became available he could jet back and take care of us. I told him that I vote he stay here this weekend. I'm sure he'll take that into consideration, don't you think?

Unfortunately, we're really struggling with getting homework from school. There's a bottleneck somewhere with science and social studies. That's pretty frustrating when we're trying to catch up with all the other students but can't seem to get the work from the school. Not sure what's going on there, but hopefully will get that straightened out soon. I would hate for Bailey to be left behind just because they didn't keep us updated.

I'll catch up with you again tomorrow.

Hugs to all, Angie

Wednesday, April 06, 2005

We Almost Had One

Bailey woke up this morning, took a bite of a birthday cookie and a sip of Dr. Pepper [that was just to get her medicine down - that wasn't her breakfast!], and was then instructed by the nurse that Dr. T called and said not to eat or drink anything for a while. We didn't know what that meant, but Bailey knew that when that happens, it involves anesthesia. I had two thoughts: either they're doing a cath (because they did an echo yesterday) but I didn't really know why they would be doing a cath; or they were looking at a heart. But I didn't really think this was it either since they say it usually happens at night and I didn't really want to get my hopes and anxieties up. Bailey was worried. About an hour later, Dr. T comes in and says they are looking at a heart and would know in the next couple hours if it's a good match.

Wow. Here we are. We may or may not be having surgery within the next few hours. Bailey may or may not be getting her heart today. We may or may not be going home in 3 weeks or so. A lot to think about. A lot to be anxious about. Bailey became quite upset and scared of the whole thing. She did want it to be her heart but she didn't want it either. She was scared but she was excited. We had a talk about all the mixed emotions we were both feeling. We decided that this could be it, or it could also just be the first of several days like this. Either way, it's going to happen when God says it's going to happen. God's timing is perfect.

Then our friends from the documentary show up (without cameras - but I'm sure they had them with them somewhere) because Dr. T called them to be prepared. It was good to see them. They're such nice guys. Oh, and Brian opened his cell phone and showed me Patrick Dempsey's phone number - "He's a buddy of mine," he says. I asked if it was true he's narrating Bailey's documentary, and he said yes. I also asked if we get to meet him, and he said "absolutely". Sorry, girls, I don't have a photographic memory and didn't get his phone number! Haha!!

About 2:00, Bailey's nurse, Sandy, came in and said she could go ahead and eat. So, that was it. I guess it turns out it wasn't the perfect match. I felt, for a split second, like falling to my knees and just crying, but Bailey instantly bugged her eyes out and said, "Will you go get me McDonalds?!" She was more relieved that she could finally eat. But now we know what it will be like when it happens. It'll be a surprise and it will be fast. It will be exciting and it will be scary. And it will happen when the time is right.

Love you all,

Christmas Card Voting

Hi everybody! Christmas card voting took place today in the atrium. Of course, we took a walk downstairs so we could cast our votes. (We also stepped outside - it's beautiful!) The ballots had 5 lines on them and you just picked your 5 favorite entries. Bailey's entries were Nos. 21 and 24. So, my ballot showed, "21, 24, 21, 24 and 21". (They said we could do that.) And then we "plugged in" [the Berlin Heart into an outlet] and hung out in the atrium for a while and watched people voting. We did not, I repeat, we did not shout at all the doctors and nurses we knew to vote for numbers 21 and 24. We wouldn't do that. No way, huh-uh. (Where's the smiley face on this laptop?!) After Dr. T popped in today, we informed him of the voting going on downstairs and that Bailey's numbers were 21 and 24. He popped his head in again about 2 hours later . . . "Now, what did you say Bailey's numbers were?" An "informant" later told us that Dr. T's ballot showed "21, 21, 21, 21, and 21". He's such a good guy!

Bailey and I were playing a mean game of SkipBo this afternoon, minding our own business, when the phone rang. It was Bailey's nurse, Amanda (who happened to be peering in the window from the hallway), and she said, "Hey, Bailey, the monitor says you're dead." Believe it or not, it was a hilarious moment. (I think that's additional proof we've been here too long.) When the monitor shows a flat line, that just means one or more of her leads fell off her chest. I guess we're able to joke about things like that because obviously she's not. She's doing incredibly well on the Berlin Heart. I hear there are 3 of them in the United States right now, and Bailey's one of them. I also hear that Dr. T's name was in the Doylestown (PA) Intelligencer newspaper recently regarding the Berlin Heart. That's pretty cool!

In case you're in the area and get a chance, the Christmas card voting is going to be at the Artsgarden at Circle Centre Mall Thursday from 11:00 to 1:00, and at Castleton Mall on Saturday from 11:00 to 1:00.

Hope everyone enjoyed the day today. It was beautiful! There's a magnificent Star Magnolia tree blooming in the library courtyard here. It is truly peaceful. I love nature -- it's God's gift of his amazing artwork to all of us. And it's just the beginning of spring - lots more color and beauty to come!

We looked up the internet site for the downtown Indianapolis peregrin falcon web cam - http:\\\falconblog. It's really interesting. There's a huge pigeon roosting across the rooftop from our window and we've named him Perry -- we're pretending he's our peregrin falcon. He's not nearly as pretty, but he's still fun to watch.

Enjoy the Spring, everybody! Talk to you tomorrow.


Tuesday, April 05, 2005

Silly String Fight

Boy, I'm hoping to get to be "early" tonight (i.e., midnight) . . . I think Bailey's a little tired today. She's had a big birthday weekend. We woke her up at 10:00 this morning to take 8:00 medication, and shortly thereafter Child Life surprised her with a bombardment of silly string and gifts. So, being the teen that she now is, she saved the silly string and got Dr. T when he came in today. All the nurses were crowded around the window looking in and, after Bailey got Dr. T, he ran to the window, pulled the curtain across the room so there were no witnesses, stole Bailey's silly string, and got her back! And, of course, Mom was left to clean up the mess. We got one little string on the Berlin Heart -- I have no idea how it escaped.

We gave Dr. T a copy of the picture of him and Bailey at the Pacer's game. He really liked it -- but he tried to set himself up as the "victim" in their relationship. Yeah, whatever! Then he ran and stood just outside of the door of our room, looked in and said - with his hands on his hips - "I bet you can't get me now [with the silly string]!" I think he was quite safe since Bailey's attached with a 6-foot tubing to a 200 lb. box. Kids!

I hope everyone out there is having a good week, good spring break, or whatever the case may be. Travel safely! Don't forget about us in here - we've been here 67 days.

Talk to you tomorrow!


Monday, April 04, 2005

Happy Birthday, Bailey!!

Happy birthday to you, Happy birthday to you, Happy birthday, dear Bailey, Happy birthday to you !!!!

Wow! A teenager!! Can you believe it? I can't!

Bailey's had such a fun day. We had a nice family party in a conference room down the hall that has an outside deck attached to it. It was warm enough that the kids spent most of the time playing out on the deck. It was a beautiful day! I even got to spend some time working in my flower gardens at home . . . and, of course, now my back hurts.

And, R & L, thank you so much for all the goodies for Bailey's birthday. You have made her feel very special today. And she got so many girlie things!! She's having a ball going through all of it. Thank you so much for being there for us!

Well, I hope everyone has a great week! And, who knows, maybe Bailey will get her heart this week. Talk to you tomorrow! Hope you enjoyed the pictures!

Love and hugs to everyone, Angie

Saturday, April 02, 2005

Bailey's "swollen feet" - April Fool's!! Posted by Hello

Bailey getting ready for the Pacers game - she just doesn't know yet that's where she's going Posted by Hello

Bailey's transport team - Joe (drove the ambulance) and Ann (kept Bailey safe on the ride to Conseco and back) Posted by Hello

The profusionists (experts in equipment/Berlin Heart) who accompanied us to the Pacers game. Posted by Hello

This is Josie at the Pacers game . . . Posted by Hello

. . . and this is Marissa at the Pacers game. Posted by Hello

Bailey with her Berlin Heart and hand sanitizer at the Pacers game Posted by Hello

Bailey and Dr. T spending quality time at the Pacers game! Posted by Hello

Josie, Bailey and Marissa in the Pacers suite Posted by Hello

Coach Carlisle and Germaine O'Neal visit with Bailey before the game Posted by Hello

Donnie Walsh handing Bailey a basketball signed by Larry Bird Posted by Hello

Quinn Buckner Posted by Hello

Dr. Nobiel (Coach Carlisle's wife), Dr. T, and Dr. Cox - the three who organized the entire Pacers field trip Posted by Hello

Bailey's mask she made from cast material Posted by Hello

Bailey and Dr. Turrentine "checking out the carpet" in the atrium Posted by Hello

Party in Bailey's room! (L-R: Nancee, Beth, Jorie, Katie and Shondra) Posted by Hello

The night shift nurses - (L-R) Jenny, Angie and Dave Posted by Hello

April Fool's Day

Don't worry. After last night, I'm too tired to play any April Fool's joke here, so don't worry about that. Bailey didn't go to sleep last night until 2:30 a.m. We got back from the game at 11:30 and she was so wired and excited, she was just not going to go to sleep. Then, Dave, her night nurse, came in at 2:30 and I said . . . well, actually, I begged, "Dave, make her go to beeeeeeeed." He said, "Bailey, go to bed," and left. She did! I had to wake her up at 10:30 this morning to take her 8:00 medicine.

Shondra, the Child Life specialist, brought Bailey a pair of blow-up clown feet. So, Bailey's trick for April Fool's Day was to tell everyone that came in that her feet were a little "swollen". (We wanted to think of something that wouldn't give people a heart attack, which weeded out a lot of tricks.) She did it to Dr. T when he walked in, and he grabbed them and threatened to clobber her with them. We had some fun with that. Then at about 7:45 this evening, I laid down in bed with Bailey to help her with her homework and pretty much fell asleep immediately. A nurse knocked on the door telling me her leads fell off (the stickies on her chest that leads to the monitor that reads her heartbeat and respiratory rate). It was then that I discovered Bailey asleep too! So we fixed her leads and slept until 10:00. Now we're watching a movie. While we were asleep, the transport team from last night's game came up to give Bailey copies of the pictures they took in the suite. We didn't even hear them come in!

Did you guys see the article in this last week's People magazine about transplants? It was about whether or not transplant patients "inherit" a trait or two of the donor (i.e., craving for the donor's favorite food; attraction to the donor's favorite music, etc.). They say there's really no scientific evidence, although cells do have "memory" and it would kind of make sense. But in the article, they interview some transplant patients who say they have experienced sudden strange changes like that and find out that the donor liked those things. It's very interesting. That's one thing that the transplant coordinator here told us -- that people on the street might ask questions like "Do you crave the donor's favorite food," etc. -- and she told us that it's not true. I guess we'll find out!

I'm going home in the morning. I'll try to post Pacer game pictures and I'll talk to you Sunday evening. Thank you for reading and keeping updated on Bailey. We love you!!


P.S. Happy Birthday, Jim!!

Friday, April 01, 2005

Go Pacers!

You guessed it -- Dr. T took Bailey to the Pacers game! What a night! I'll warn you now, this is going to be a long post.

I tried all day to get Bailey to wash her hair - she's just not in to it. Dr. T busts in the door at 3:00 while she's working on a craft and says, "What are you doing?! You don't have time to be doing that! You have to be ready to go by 6:00!" They go back and forth, with Bailey saying "Are you serious?!" about 3 or 4 times. He says, "So, there's good news and bad news. The good news is you're going out to night. The bad news is . . . " And Bailey cuts in and says, "What, you're going too?" We bust out laughing and the poor guy's looking at us like "Did you hear that?!" I'm thinking, "Oh, Bailey! Just wait until you find out!" (The bad news was that her blood isn't thin enough again and, since she can't be hooked up to an I.V. because "we have plans and that would screw them up", she had to get a shot of heparin in her arm. But she took the news well - but the shot did end up hurting her quite a bit, it stung really bad, but she got through it.) So he leaves the room, and she says, "We have to wash my hair!"

So he comes back at 6:00 with his nurse practitioner and all the emergency medical supplies packed up and he leads us all (Scott and Nancy, and Tom and the girls, and me and Bailey) down the hall. She still doesn't know where she's going but all the nurses are waving and saying, "Bye! Have fun!" We get all the way down to the exit doors by E.R. and one of the transport people, Ann, introduces herself to Bailey and says, "My daughter was so jealous to find out you were going to the Pacer's game tonight!" The whole crowd busts out laughing. We were all just DYING for the moment that she was told what was going on. It was priceless. Ann's face turned beet red, of course, and Bailey's eyes were HUGE! Dr. T just laughed. So we climbed on the ambulance (Bailey, me, the transport team, and two profusionists (equipment/Berlin Heart experts - along for the ride, we find out later, because Dr. T is "just paranoid"). Scott and Tom each take off with their VIP parking passes and meet us over at Conseco Fieldhouse. The ambulance gets to drive underneath the Fieldhouse where all the players, coaches, and other important people park (boy! there are some nice cars down there!). Bailey just gets lowered out of the ambulance when three really important-looking guys walk up to her. Once of them introduces himself to her and Dr. T leans over to her and explains that they are the referees. They tell Bailey not to yell at them too loud during the game. They were very nice and all tell Bailey how nice it was to meet her.

Then we make it to the suite -- the "Pacers Sports & Entertainment Suite" -- and the coaches wife, Donna, is there to meet us. We actually met her yesterday here at Riley. She's a doctor here, but goes by another name. When they took me out in the hall yesterday to talk about final plans and explained to me who she was, I couldn't go back into the room and tell Bailey because that would have given away the surprise! So that made it even harder to keep the secret, but I did! Anyway, she made sure we were comfortable, and then Coach Carlisle walks in with Germaine O'Neal! They introduce themselves to Bailey and talk to us for a few minutes. They were very nice! (Boy, does Germaine have some BLING!!) Then, Donnie Walsh walks in a little while later carrying a basketball signed by Larry Bird. He talks to Bailey -- very nice man -- and Dr. T then tells him that his $25,000 donation went toward Bailey's Berlin Heart. He was very grateful to hear that and said how nice it was to see what his donation is doing. AND THEN, Quinn Buckner comes in and talks to Bailey. What an evening. Bailey eats a hot dog, cotton candy, a snow cone, and a huge pile of nachos. Now, how am I supposed to record that on her calorie count sheet?! Donna, the coach's wife, sat down by the bench the first half, but spent the rest of the game with us. She was such a sweetie. (Vickie, she reminded me so much of Juanita!) Dr. T made it very clear to Bailey before the game that we can all leave whenever she gets tired. So, just as the game goes into overtime, Bailey turns to Dr. T and says, as an "early April Fool's Day" trick, that she's ready to go. Dr. T, being the sweet man that he is, says, "OK. We can go." Bailey blurts out "April Fool's Day!" and then they bicker back and forth for a while. We thoroughly enjoyed the rest of the game (Pacers won, 114 to 108), waited around a little while after the game to let the crowd and triffic clear out a bit, boarded the ambulance, and came back "home".

I got some good pictures. I'll try to post them at home this weekend.

We had such a good time! And Bailey was so surprised, and on Cloud 9 the entire evening! We didn't even take a wheelchair with us - she walked the entire way herself. I'm sure Dr. T would have carried her if he needed to. The entire medical team was just simply at Bailey's service tonight. They treated us all like royalty. Truly a night we will remember for the rest of our lives.

We got back about 11:30, and all the nurses run down to Bailey's room and wanted to hear all about it!! Such a fun evening!

And Dave, Bailey's night nurse, even taped Survivor for us tonight. They are so good to us!

Unfortunately, I am pretty tired (It's really 1:30 a.m. but I'm posting this as 11:45 so it will keep the March 31 date) but I'm afraid Bailey is far from going to bed. So, pray for me! Haha!!

Wish you all could have been there with us -- it was one big party!

Love, Angie