Happy Halloween!

Still on the nitric. Bailey slept great last night and had a great day of eating and peeing. That's ALWAYS good. I didn't sleep too well and woke up with a big headache. Every time the door would open throughout the night, I thought they were going to whisk us away to ICU. So not much rest, but it was SO GOOD to see Bailey feeling so good today. She did, however, go into flutter again today around 4:00 or so. BUT, it's her normal flutter this time -- not any of that 170 heart rate stuff or everyone running in thinking she was in flutter when she says she isn't. This is her normal stuff. So much less dramatic today . . . much easier to take. Bailey did get a little mad for a minute and said she just wanted to go home, but she didn't let it keep her down. Dr. Hubbard came up to confirm the flutter and tried to pace her out of it, but that didn't work . . . and it hasn't worked on any of her other normal flutters she's had so we weren't surprised by that. Dr. D came up and said she'll be cardioverted in the O.R. tomorrow and he'll be the one doing it. That also made her less anxious about it. Dr. D says we'll be here through the weekend, at least. Unfortunately, all the fluid has returned. She really is back to her pre-procedure weight -- we were hoping the 100-year-old scales down in ICU were off by about 10 pounds, but just not the case.

We're hoping for another restful night for Bailey, and hoping to get some rest myself.

Josie and Rissy are trick-or-treating right now. We wish we were there with them. The hospital set up stations on all the different units for patients here to trick-or-treat -- it was so cute to see all the little costumes. Bailey couldn't participate because of the nitric oxide machine -- not portable -- so they brought the trick-or-treating to her. "Our people" are so thoughtful.

And to the Regulators, thank you so much for helping take care of us. We are truly speechless at your thoughtfulness and generosity. We are extremely touched and thank you from the bottom of our hearts. Maybe we can meet you all some day and give each one of you our own hugs.

Don't eat too much candy, everybody! Happy Halloween!

Angie

These Days Are Just Difficult

Bailey woke up feeling good this morning after a pretty good night's sleep to see that the nitric oxide was down to 3 (weaning from 10). They were really trying to get her up to the Heart Center and, we did finally get here! We're in the heart center. That wasn't the end of it, though. By far.

She was nauseous and vomiting all day. We got up to the heart center about 2:00 or so (maybe 3:00 or so, I have recently lost all comprehension of days and time) and she was so miserably tired and worn out from vomiting that she finally asked for the combination of morphine and adavan that knocked her out for about 6 hours last week some time. She said all she wanted to do was sleep. Dr. D came up and stood with us for a while directing our nurse on what to give her and she ended up getting that combination. We were hoping she'd go to sleep and rest for the rest of the afternoon/evening, but that wasn't to be. They thought she was in flutter, so doctors and nurses started scurrying around. Even doctors we have never seen before came hurriedly in our room. We were getting scared. One of them asked something to the effect of, "Why are we here?" That did it. I went into mom mode protecting her young, and said, "I don't know. Why ARE you here? You guys are scaring Bailey." We since learned that that was normal procedure around here when someone goes into flutter (or at least that's what they said to make us feel better). So I explained to Bailey that (except for these past few days in ICU) we have always been at home when she went into flutter, so this was something new to us. But fortunately, the end result of everyone coming running, was that Dr. Hubbard and Dr. Darragh also came running, and they got things under control. They discovered Bailey wasn't in flutter (and she kept telling them she wasn't or at least didn't feel like she was) but her heart rate was in the 130's (her norm is high 80's to 90's). Something definitely was going on, but not flutter. They think a combination of her being exhausted, drugs, and her anxiety just made her heart flip out for a little while. So I went downstairs to make a few phone calls while Scott stayed with Bailey (he stopped by after work), and came back up to find everyone in our room again. Her heart rate had jumped up to 170's and stayed there. Dr. Hubbard was able to hook her pacemaker up to a machine that enabled her to "pace" her back to a normal rate. Gee whiz. So Bailey went to sleep seemingly comfortably. I went downstairs to meet my sister Cindy and my brother-in-law David, who brought me dinner, and had a nice dinner in the cafeteria with them. Bailey wanted them to come say hi before they left, so we went up to the room, and, would you believe it, there were about 6 people gathered in her room and Scott was waving me down the hallway. He said, "They want to send her back down to ICU." He was quite upset, Bailey was quite upset, but we had good, good people there (Chrissy namely - she's absolutely wonderful and helped see us through the night with her first flutter in ICU last weekend) and it was so nice to have my sister with me. She speaks the medical language (cardiology even!) and was a great calming force for myself and for Bailey and for Scott, I think, too. Anyway, Chrissy explained that she really needed to be in nitric oxide and they don't do that anywhere but ICU, but she would try to make it happen anyway. She made it happen. She said she can't promise that we'll stay out of ICU, if Bailey's numbers don't do better on the nitric, but she got the machine up here and Bailey felt immediately better on it. I knew she was feeling better when she said, what is that over there that Aunt Vickie brought? Vickie delivered the package a few hours earlier just before this all happened, when Bailey was feeling just awful. Then, she went through the basket picking out the fruit she would keep and the fruit that the nurses could have. She ate an orange - the first food she's eaten today that she kept down. Our nurse also gave her a nausea medication that they use with cancer patients, and that (maybe in combo with the nitric) made a huge difference. She was sitting up in bed watching Dancing with the Stars. (We're shocked, by the way, that Sebrina went home.)

I am just so competely grateful for my family, for all the doctors and nurses and various other staff members who help us on a daily basis here. It is obvious that they love Bailey and will do anything in their power to make her feel as good as she possibly can. We are so so so grateful.

And, thank you R&L for also taking such good care of us. It is a tough, tough time right now, and you will ever, ever know how grateful I am for you guys and for everything you do for us. "Thank you" is not enough, but since it's all I can muster right now . . . Thank you from the bottom of my heart.

We are at home on the Heart Center and hope to stay here.

Have a good night, everyone. I am praying that we do the same.

Angie

Cardioversion #22

Yep. Believe it or not, flutter again last night. They put her back on a heprin drip (blood thinner to avoid clots) and the blood came back in her urine (don't think I told you that little detail before). They think the foley cath might have done some slight trauma when they put it in for the procedure last Friday. It cleared up after Saturday's cardioversion when they stopped the heprin, but started up again today. They stopped it again after today's cardioversion and is already looking much better, but it freaked Bailey out. She got nauseous every time she peed and I think it was just seeing the blood. There was quite a bit there - not just pink tinged. We were both up a lot last night. Her heart rate was bouncing from 120 up to 160, back and forth all night. She's not had that high of a heart rate with flutter before (well, until Friday night) and she couldn't sleep because of it pounding. Finally, she got really scared at 2:30 a.m. and had me step out and page Debbie, our very own personal nurse. Debbie is so wonderful to us. I felt awful calling her in the middle of the night, but she told me I did the right thing, and I really think I did. It was only after I talked to Debbie that Bailey and I could get any wink of sleep.

They took her back for cardioversion around 10:00. They had some trouble. The first 2 times, she went right back into flutter. They paged Dr. D and he came up and made some changes to her pacemaker setting and tried a third time, and it worked. That was so scary. These last 2 flutters haven't been like any of the other 20, so it's easy, especially in the midst of the ICU constant happenings, to get pretty scared. But she had a good afternoon and evening, and I'm sure she's waiting on me to get back down there. She's now timing my absences, giving me exactly the amount of time she thinks I need to accomplish my errand, whether it be a shower, phone calls, or blog pages. Ha! She's funny. I love her to pieces. And speaking of loving to pieces, Tom, Josie and Riss came to visit tonight. Tom's doing an incredible job of keeping them going - halloween costume is complete. I hear Riss is going to be a hippie. Tom better take pictures! Josie is going to be Hannah Montana - but she's not happy with her outfit. If we miss halloween, Bailey still wants to carve her pumpkin, so we'll be doing that a little late, but it will get done!

Love you all. Thanks Debbie for the basket! It's all wonderful and perfect! Thanks for not using Brian's radishes. (Thanks a lot, Brian!) And Bailey LOVED the black olives. They are the first thing she opened after cardioversion. The doctors were standing around watching her eat black olives, in disbelief. Ha!

And, Beal? You're right. He doesn't blink. Ha! Love you guys too - it was good to see you.

Hopefully a good night for all . . . including us.
Angie

A Fairly Uneventful Day

We both slept better last night. I woke up several times to glance at all the numbers in all sorts of pretty colors on the monitor and they looked pretty good throughout the night. She had a pretty good morning, although she did throw up once. They weighed her early this afternoon -- they had to track down a scale. They must not weigh very much in ICU. Our nurse found a really old kind that they had at the doctor's offices before the digital ones - the kind that slides. Believe it or not . . . because we didn't believe it really . . . she weighed 111, which is what she weighed the day she had her procedure. Oh, we were so disappointed. We're hoping the scale is just so old that it's off by about 10 lbs. The chest x-ray this morning looked better than yesterday morning, although she still has some fluid in her lungs. She's still on nitric oxide, although they're weaning her down every 6 hours. At that rate, we'll still be in ICU tomorrow. I'm hoping Dr. D will come in and speed things up a bit. Bailey really doesn't like being in ICU. Everything is so much more intense - as it really should be since it's ICU. But it is very different from the comfort of the heart center.

She had a good afternoon visiting aunts, uncles and cousins. She got her foley cath out and was a new person. She can now move around much easier and is sitting up more - that makes it much easier for her to breathe. She'll breathe short and shallow at times, but her BP today has been pretty good.

Well, as seems to be our thing, we don't know what's in store for us short-term or long-term. We're hoping to be home by halloween. If we are, Bailey has decided to go trick-or-treating as a hospital patient. Ha! That will be an easy costume to create. Tom's at home helping Riss with her costume - they were supposed to go to K-Mart tonight to pick it out. Sometimes she has the attitude of, "Oh, I don't know what I want to be. Just forget it." Hopefully Tom and J0sie can help her out. Tom's already purchased the halloween candy, so he's doing a good job of keeping the household running.

I gotta get back to Bailey. She has sent me off to make her some popcorn (low sodium, of course). I'm sure she's tapping her fingers on her bedside table by now. Ha!

Love you all.

Angie

Very Long Night and Day

Bailey went into flutter last night at 9:00. Well, poo. They immediately stopped the drain line to her belly, and put her on a face mask of nitric oxide. She scared me. She was laying there just fine and she lifted her head with big round eyes and said, "What's going on?!" Right then the monitors started going off as her heart rate jumped up to 180. Of course our staff started paging Dr. T, Dr. Hubbard and Dr. Darragh. Dr. Hubbard (the on-call cardiologist - she's wonderful too) ended up spending the night here to keep an eye on her rhythm strips. I guess her heart was doing some kind of beats that she's never done before, and I can't even begin to remember the name. Her blood pressure was dropping and other numbers were out of whack. How scary. It meant another cardioversion (#21), but in the midst of ICU and all the machines and lines that are already hooked up to her and the fact that she's inside the first 24 hours of a procedure, things were pretty heavy for a while. Finally, at 4:00 am, Bailey asked that I call her dad. She was getting pretty scared. All the all-night attention was pretty intimidating, but they were pretty concerned. They cardioverted this morning about 9:00 and, thank God, it was quick and smooth.

We were hoping that was the end of the drama for the day, but Dr. T wanted to try to drain just a little bit more off so they started the drain back up moving very slowly this time, and they took her off the nitric oxide at the same time. That didn't work. The nurse just walked normally into the room, as she had been all day long, and took out this dopler box thing which is apparently a definitive blood pressure reading. (Her art line reading and her cuff reading were not matching, so they wanted a true BP.) She couldn't find the pulse, so she asked another nurse to help. She found it right away and we all laughed, but we didn't laugh very long. Her BP was 48, and Bailey suddenly felt like she was really, really weak and couldn't move. Well, let me tell you. It was a time for prayer and I certainly did that. She paged Dr. T and Dr. Hubbard and they both instructed her to stop the drain and put her back on nitric oxide. They were finished with the drain. And she started feeling much better immediately back on the nitric oxide. So that's where we're staying for the night. We're still in ICU of course.

So T came back just a little while ago to check on her, and he decided to take out the drain cathether in her belly. She was, of course, scared to do that, but he did it, was very gentle, and it didn't hurt Bailey too badly. But now, the fluid is still coming out of the hole and keeps saturating the dressings. Bailey's feeling fine but she's grossed out because the saturated dressing starts to allow drippings down her side. She doesn't like that. They are going to note the time it takes to fill a dressing and then call Dr. T.

Hopefully our night will be completely and utterly uneventful. I'm hoping we can all get some sleep tonight.

Talk to you tomorrow,
Angie

Dr. T Sums It Up: "It's a good day, Bailey."

Today started out rough. Our nurse woke us up at 6:30 to tell us she needed another I.V. and, even worse, they had to move so quickly that she couldn't wait the 15 minutes or so for numbing cream. So, it was another tough time getting it in, but we got it in and Bailey was, once again, incredible. We, of course, never got back to sleep, and her INR number was down a lot from last night but not enough still for the procedure, so they gave her 2 more units of PFF. They pre-treated her this time with Benadryl so no scary reactions. But she did get nauseous and sick earlier in the day. Her INR was low enough to do the procedure to draw off fluid and put in a central line (so she won't have to get stuck anymore . . . at least this visit) but not to do the lung biopsy. So Dr. T took her back about 2:30 and at 4:00 we were called to recovery where she was already feeling great. She said, "Look, Mom, I'm laying on my back and I can breathe." He took 2.5 litres off of her in surgery, and after they got her to ICU they hooked up the pump and I can't even begin to tell you how much more fluid has come off, but lots. Her tummy looks SO much better already and, the best part . . . ready for this? . . . she's peeing a BUNCH on her own . . . yes, that's WITHOUT diuretic. We're so happy. Dr. T and she have been going at it, of course. He keeps messing with her foley cath . . . amazed at how much she's peeing on her own . . . and he says, "That's impressive." She simply responds with, "I know I am." Ha! It's such a joy to see her happy and feisty and so good to see him happy and feisty. They are a pair.

I'd better get back up there. I'm on the heart center posting but she's in ICU. Scott's with her so I need to get back. Dr. T said she tolerated the 2.5 litres coming off great. There's always a risk of her B.P. dropping too low as all this fluid comes off - they're watching that closely. So far, so good.

Gotta go!

Angie

A Not-Quite-As-Bad Day

Well, we didn't get the procedure in today because Bailey's blood was too thin (INR 10 - normal for her is 2 to 3) . . . actually WAYYYYYY too thin. At first they thought the blood test was wrong, but they did another one and it was 9.6. So, they spent the day (and still spending the night) trying to get her blood to thicken up. They gave her 2 units of FFP (fresh frozen plasma) and then some Vitamin K. They are testing her blood right now and we should hear within the hour the new number. They might have to give her 1 or 2 more units of FFP. The first unit of FFP went fine. The second unit was almost all the way in (they run it through an IV pump) and she felt a tickle in her throat. Hm. Didn't think much of it. Then, she started scratching and her ears and eyelids were itching. Then, in the next 2 minutes, she said, "Mom! My lips and throat are swelling up!" Oh my. That was quite scary. I have to get across to anyone who might be reading this entry, that Bailey is an incredible young lady. She was so scared and thought her throat was going to close up so she wouldn't be able to breathe, but we talked through those few minutes together and she stayed completely calm even though the tears were streaming down her cheeks. She was able to tell us that her lips were getting bigger and it was getting hard to swallow but she could still breathe. Her lips kept getting bigger but, fortunately, a million thanks be to God, her throat didn't swell anymore. She got bumps (hives, I guess?) on her eyelids and inside her mouth and throat and a rash on her chest and back and ears. Our wonderful nurse Amanda (whose birthday is today - Happy Birthday Amanda!) ran out to page everyone she could think of and ran back in to give her Benedryl in her IV. It's amazing how quickly that stuff made a difference. The itching and rash were gone in about 2 minutes. It took a little while longer (30 to 60 minutes) for the hives to go away and her throat to feel better, but at least it didn't get any worse. They say it was just a reaction to the FFP, which is fairly common. We were just grateful that she didn't have any of the other reactions we were warned about like fever, back pain, and other not-so-fun things.

Just before the plasma issue, in order to run the plasma, they had to give Bailey a second IV. They tried 3 times before they finally got it. Oh, it's awful to hold your child while they're crying and saying, "Mom, it hurts! It hurts!" But I would rather be no where else in the world than right there with her.

So, we just found out about an hour ago that her first I.V. started leaking and went bad. So, if she has to get more FFP (depending on the results of the blood test we're waiting on), she'll have to get another I.V. tonight. I just hope and pray that her blood gets thick enough to do the procedure tomorrow and Dr. T can put in a central line. That way, she won't have to get stuck anymore. You should see her arms. They have bruises and I.V. sticks all over her forearms and hands. She's really packing on the pounds in additional fluid too (weighed in at 110 this a.m. - her base weight is 85 - or at least I think it still is - she hasn't seen that since last December). They've had to give her fluid because of all the vomiting she did yesterday and, today, the FFP gave her additional volume. She's peeing ok, but it is not as much as they'd like, even with the diuretic. They say that should be better after they get some fluid drained.

She woke up this morning really scared about the procedure but, after all of today's challenges, I think she's ready for it now. Still nervous, of course, but ready.

Thank you all for taking the time to write back to us. You are giving us so much encouragement, strength, and love, that we can't even begin to return it. But we're glad to take it right now. It's very comforting. Thank you.

Love you all,
Angie

A Pretty Difficult Day

Bailey had a pretty yucky day. It started out good (although she was up 2 lbs this a.m. - probably due to IV fluids) - she woke up hungry and ate her breakfast. It just didn't stay down too long. Then the vomiting caused lots of pain in her sides - probably because of all the fluid pulling, tugging and smashing everything - so they gave her morphine for her pain. Between that and a different nausea medication, she was pretty well out of it all day. She opened her eyes and sat up only to vomit. So, so hard to see her sick. One reason the last several months have been even tolerable us that she has felt pretty good besides the discomfort of all the extra fluid. But to see her so miserable, weak and pretty much out of it - completely not herself - is so hard and stressful on me. She would wake up enough to ask me questions throughout the day, "Mom, why do I feel this way?" "Mom, I don't want morphine anymore - I don't like this." "Why am I so weak?" Just made me want to cry. Well, in fact, I did have a small break down this morning. It was funny . . . I just got showered and dressed and could feel it welling up inside. I decided I needed to talk to Debbie. Not knowing where she was in the hospital, I paged her. I was just walking out of Bailey's room when I paged her because Bailey was still sleeping and didn't really want her to see or hear me cry, and I say, "Hi Debbie. Where are you?" And she says, "I'm standing right here looking at you." And I look up to see her standing about 10 feet away. Hours later, it was pretty funny, but at the time, I just walked up to her and fell apart. She and Dr. D took me aside and had a very nice conversation just basically reiterating everything and assuring me that this wasn't happening because her heart was getting worse. They made me feel better, but I knew I would be in trouble when I walked back in Bailey's room. She was instantly be afraid of why I was crying. She's been around me enough to see my minor breakdowns and wasn't too surprised to see this one.

The liver doctor came to see Bailey today and they did an ultrasound of her liver. And the thyroid doctor came to check that out. Haven't heard any results of anything really, so don't think they found much there. But Dr. D and Dr. T have consulted (and the liver doctor also) and they decided to drain some of the fluid off of Bailey's belly. So probably tomorrow afternoon they'll get her in. They're not going to just draw it out with a syringe, they are hooking her up to a line that will be controlled by a pump that will draw the fluid out over a 24 or 48 hour period. This will hopefully avoid any issues with dropping blood pressure. They're also doing a lung biopsy while they're in there and giving her a central line (an I.V. that can potentially stay in for weeks/months - maybe she can avoid all these I.V. sticks). We might have to spend the night in ICU - depending on how well things go. But hopefully she will feel much, much better afterwards. Procedures all have their risks, so Bailey and I are both a little nervous, but looking forward to feeling better.

Well, unfortunately, I've developed a blind spot in my left eye and now squigglies which only means a migraine coming on. I was so looking forward to a good night's sleep tonight. Oh well. Ugh!! I don't want a migraine. At leave I have some medicine with me. I'd better go take it.

Have a great day, everybody, and I'll keep you posted.

Angie

Admitted Today

Bailey had a pretty rough night with nausea and vomiting. She's still in rhythm, but she wasn't able to keep her morning medication down. No fever or other flu-like symptoms. We went in for I.V. nausea medication and ended up staying at least overnight. I'm home at the moment staying with Josie and Marissa while Tom works, but I'll be able to return to Bailey within the hour. Scott's there with her and Jenny is her nurse tonight, so she's in good hands.

I'll keep you posted.

Angie

Another Cardioversion (#20)

We had a great afternoon at the orchard yesterday picking out our pumpkins, drinking cider slushies, and driving through the hills to see the beautiful colors of the trees. It was a very nice and relaxing afternoon. Then, last night at 11:00, Bailey walks in my bedroom and says, "I'm out of rhythm again, Mom." Bummer! She was so nervous going into today's cardioversion after the difficulty they had on Saturday. But Dr. Darragh was the one doing it today and it went very smoothly -- it only took one shock to get her back into rhythm. We were so relieved. She's still recovering from muscle soreness from Saturday, but otherwise feels pretty good.

So, hopefully we're set for a while.

Have a wonderful week everybody! We're really enjoying the rain -- we've had so little of it this year on our side of town.

Angie

Cardioversion #19

The week was a little eventful for us, but have managed to avoid any overnight stays at the hospital. We went to see Dr. Darragh on Wednesday because Bailey woke up and had gained 2 pounds. She was pretty scared because we've seen that things can change very quickly sometimes. So, fully expecting to get admitted, we packed all our bags for a 5-day-or-so stay. They took labs and did an echo, and Dr. D said that Bailey's heart function was actually improving. Her PA pressure is in the 50's (which is not normal but good for her) and, the most exciting news, her left ventricle is working too good to give up on right now. So he's still not ready to list her for a transplant. We have decided that we will be very grateful for that option if we get there but, for now, we'd like to avoid it. He mentioned again the possibility of an open-heart surgery to repair a leaky mitral valve and possibly remove some scar tissue left from the Berlin Heart cannulas. So, we kind of feel like a whole new world of possibilities opened back up for us. And, her createnine (???) (kidneys) level was back down. That's good! (That kidney thing scared us pretty good.) He changed some medications around and told us that he was comfortable with sending us home and dealing with the fluid at home. However, and this is what I love about Dr. D, he gave Bailey the option of going home or staying for some IV diuretic. He said that if she was too scared to go home and it would make her feel better to stay, he would do that. Just hearing him say he was comfortable sending us home made Bailey feel a lot better. And, I have to say, it made me feel better too. I think I was envisioning in the back of my mind the kidney thing happening again - that happened when she was up to 110 pounds and she's 106 now. We left there just looking at each other and saying things like, "Well, I think I feel a lot better after that visit", "Well, that was good news, wasn't it?", etc. So, we went home and unpacked everything. Ha!

Then, Friday night Bailey took her blood pressure, like she does every night, and it was normal and her heart rate was 85 (which is normal). But for some reason, she took it again, and her BP was good but her heart rate jumped to 104. So she took it a 3rd time, and it was back to 84. All within the span of about 45 seconds. We looked at each other, and just went on with the night. At 2:00 a.m., Bailey wakes me up and says, "Mom, I'm pretty sure I'm out of rhythm." So, I told her to take her BP (to get her heart rate, which is usually a tell-all sign) and it was 114. I told her to go back to bed and we'd call Debbie (our very own personal nurse) in the morning. We end up getting to the hospital for cardioversion #19 at about 11:30. We finally get in behind an emergency surgery at 4:30. (She's not happy - she can't eat anything all day.) But this time they had a tricky time getting her back into sinus rhythm. They had to shock her 4 times and she went into SVT (let's see . . . superventricular tachycardia) and her heart rate shot up to 180. They gave her 2 doses of a medication (adenasine - sp?) to bring it back down to normal. They don't know why that happened . . . whether it was a fluke thing or whether she's been cardioverted so many times that it gets more difficult to get it back. Dr. D wasn't the one who did the procedure . . . not to say at all that he wouldn't have had the same issues. But my hope is that, if there is a next time, he will be the one to do it and he will know just where to perfectly place the pads and it will take only one time. Needless to say, Bailey woke up and was immediately very sore. She didn't even have to move, and she started crying saying her back and her front were really sore (they place a pad on the front and one on the back). She doesn't have burn marks that are any worse than what she's had in the past (about equal to a minor sunburn), but her muscles definitely took a hit. They watched her for a couple hours to make sure she could eat and drink (even though she threw up after she ate) and her rhythm was still good, and they ended up sending us home at 9:00. She couldn't make it up the stairs last night (although she can this morning) so I slept on the couch and she slept in the recliner (about the only place she can get some decent sleep).

Marissa, who has been horribly terrified of "E.T." since seeing the movie about 3 years ago, wanted to watch it again last night to see if she liked him any better. And, it worked! She thought he was more funny than scary, so she has mastered one of her fears. She was with me and Bailey at the hospital all day yesterday and was such a good little girl. We played Aggravation all day. (By the way, for any of you out there who remember the classic marble game, in my day it was played on a pretty big wooden game board. Well, Marissa found one last week in the toy aisle at Meijer - it's a foldable game board and has room for 6 players instead of the 4 in the classic game. It's great fun for all ages - we're having fun in our family playing it. I highly suggest it for all gameboard-loving families!)

We missed out on our orchard plans yesterday, so we're going to try and get out today. Bailey thinks she's feeling good enough to go. So, pumpkins, here we come!

Have a great day everybody!
Angie

A Nice Weekend

We had a nice, fun and "uneventful" weekend. Marissa's birthday party Friday night was a lot of fun. Only 1 of her 3 friends could come, but they had a great time together. Bailey and I sat around with our friend Jenny and played with Marissa's birthday presents most of the night. It was a lot of fun! We baked some sun-catchers, and didn't even have any chemical burns while playing with the Magic Rocks. I thought it might eat a hole through our kitchen table, but we didn't spill a drop!

Then Saturday we took Jenny to our family's annual bonfire. (It was supposed to be last week, but a bonfire during 90 degree weather just doesn't feel right.) Bailey held up really well during all the weekend activity. We rested most of the day today. Drove to Shelbyville to see my sister Cindy's new house. Such fun!

And, best news, Bailey's down 1 1/2 pounds this weekend. Yeah! She gets tired really easily and still can't walk far (she still has an extra 20 pounds on), but her spirits are pretty good. As you may have noticed on Nightline, her belly is very big and people mistake her for being pregnant. Well, we went to he gas station today to get a cold drink, and there were 2 middle school to high school-age girls staring, pointing and laughing at Bailey. I didn't think Bailey noticed, but she broke down crying when we got back in the van. It is very, very sad to me that people can be so hurtful without a second thought. Of course, as Bailey's mother, I wanted to chase them down, grab them by the shoulders, and shake them, but we all know that wouldn't have done any good. I'm just glad that we can offer Bailey a safe haven here at home within our family. And we have wonderful neighbors and friends who offer all their support and prayers. We are so tremendously grateful for each and every one of you. We love you all so very much.

Have a wonderful week everyone! We're hoping to stay out of the hospital, but we'll be sure and keep you posted.

Angie

Home Again

So good to be home. Bailey's weight went down .2 pound - not much but at least it's in the right direction this time.

We'll keep you posted.

Angie

Up Another Pound

Wow. Bailey just can't seem to lose her fluid. She weighed in another pound heavier this morning. She's off her I.V. milrinone and they're talking about sending her home tomorrow if she does well overnight. Again, she's feeling good except for her belly. It's just so big and uncomfortable. Dr. D did an echo today and said her heart function is stable - and says that getting this fluid off will be a long, slow process. If her weight goes up again in the morning, I don't know how comfortable we're going to feel going home. I just pray that her weight goes down.

Thank you for all your comments out there. It's good to hear from you "Nightline viewers". I am not surprised at all that Bailey has touched your lives. She seems to have a special purpose in this world - she is an infectious young lady. She has such a positive attitude and makes the best of every situation. She doesn't complain - just waits it out patiently - praying along the way. Such an honor to be her mother. And the patience and love that Josie and Marissa show is also incredible. They are home with Tom trying to live a normal life, as best they can. I know they miss us and we miss them. I am so torn. I would like to stay here as long as possible to get fluid off of Bailey, but we also want to get home to enjoy Marissa's birthday and the fall weather. We just don't have any control over anything right now -- well, except for her low-sodium diet which we're doing a really good job of -- so we just pray and take one day at a time. We know we're in the best possible place that we can be.

Bailey's friends, Paisley and Brian, came to visit tonight. It was so good to see them and so good to see Bailey hanging out with her friends. It was a good evening.

We'll keep you posted.
Good-night.
Angie

Feeling Better

Bailey's feeling better today - has more energy. It's a good thing, because we had to move out of our room to the room next door - our ceiling started leaking. Today was just pretty much hanging out. They are starting to wean the milrinone tomorrow morning, so maybe we'll get to go home soon. But her weight went up a little bit this morning. Dr. D is still hopeful he can turn this around with medication.

Bailey got Dr. T good today. She gave him a WarHead (a super sour piece of candy) and he ate it - knowing full well what it was. So Bailey and I just stared at him waiting for him to make an awful face. Well, he didn't . . . BUT his voice went up nearly an octave. Ha! Bailey started laughing hysterically and said he sounded like a girl. Ha! It was good to have some fun with him.

Well, I guess that's it. Thank you for hanging in there with us, and thank you for all your prayers!

Angie

Way to go, Colts!

Well, we couldn't make it to the game, but we watched on TV. Great game! They made it look easy. We got ahold of the coin toss people to let them know Bailey was in the hospital, and they were very nice. I didn't expect them to be upset at all, but I thought I might detect some hint of inconvenience . . . but not at all. They were just concerned about Bailey and told us not to worry at all about not being able to make it. In fact, they said they should be able to re-schedule her for another game. Marissa and Josie were a little disappointed too, but we are all part of Bailey's family and that means we all share in the sacrifices. They were troopers. Bailey has the best sisters in the world. They are also mature beyond their years. The difficulty about Bailey's health the last several months is that we don't know where we'll be from one day to the next. We can plan things -- and do plan things in an effort to think positively -- but that also opens the door for disappointment when the things you plan don't always happen. But on the flip side, some events do happen as planned so it all seems to balance out. Marissa is having a sleepover for her 8th birthday this Friday night. We're hoping to be home by then!

Well, Bailey came to track me down. I guess she's bored. She's seen too many episodes in the "Law & Order" marathon today.

Have a good one, everybody!

See you soon.

Angie

Back in the Hospital

Bailey was admitted tonight. She's just been feeling really tired today and couldn't keep her dinner down. Then, after she vomited, she got really rag-doll limp and just not feeling good at all, so we called "our people". Dr. D increased her propafanone yesterday and thinks maybe he body is reacting to the new dose and just might need some I.V. milranone to give her a boost. Her weight is up a little bit - they're hopeful that the milranone will make her pee and get some more fluid off and, if it does, we might just be here for 24 hours or so. But they might decide to start I.V. diuretic to see if they can get more fluid off and, in that case, we could be here a 3, 4, 10 or 12 days. You know how that goes.

Unfortunately, we're going to miss the Colts game tomorrow (well, I guess it's today now). We're disappointed, but of course Bailey's health comes first. Maybe she'll get another chance later in the season - I don't know how that works.

Bailey just got her I.V. and ate a little bit of soup. I think we're both ready for some sleep.

Have a good Sunday everybody. Go Colts!

Angie

Did you see Nightline?!

Wow! That was great. Bailey did a great job in her interview, didn't she?! And, just to set the record straight, Bailey is not pregnant. Her belly is where her extra fluid accumulates - she does look and feels like she's about 8 months pregnant, but she isn't. She's quite embarrassed to go out in public right now and is always worried that that's what people will think, but she's not letting it get her down. She's an incredible lady! I thought the Nightline people did a wonderful job putting the story together, and Vicki Mabrey is such an incredibly nice lady. It was a pleasure meeting her. We just hope that this story will truly help to change the way we look at pediatric medicine here in the United States.

Oh. She went out of rhythm again yesterday afternoon. We're on our way to the hospital for #18.

Have a wonderful weekend everyone!

Angie

Down 2 Pounds!

Bailey's down 2 pounds this morning. Wow - what a relief. This is some kind of roller coaster ride. Dr. D wasn't too worried about the 3.5 pound gain in 3 days, but I must have been. Yesterday was a little difficult for me.

Stacia Matthews is coming this morning to interview Bailey for a quick piece for the evening news on Ch. 6 about the Nightline show.

Tune in to Nightline tonight at 11:30 on ABC! (or at least record it - ha!)

Have a good day everybody!

Angie

Fluid Creeping Back Up

Bailey has gained 3.5 pounds in the last 3 days. Waiting to hear from doctors.

Love you all,
Angie

Visited by Nightline

Spent all weekend cleaning our house since the entire world was going to see it. Ha! Our friends from the Speedway did the lights, cameras and sound, so it was really good to see them. They got here at 9:30 this morning and by 12:30, which was when the Nightline ladies got here, they had moved nearly everything out of our living room and set up their own little studio. Vicki Mabrey performed the interviews. She talked with Scott and me first, then interviewed Bailey. She was so nice! We weren't even nervous at all. Bailey did a great job! They were upstairs in her room for most of her interview. I can't believe the show is only going to be 1/2 hour -- they could make a good 2-hour show out of the documentary and the interviews from today. Vicki is going to be in D.C. tomorrow interviewing the FDA about the Berlin Heart. Can't wait to see what they put together. I'm sure they'll do a great job.

We see Dr. Darragh in the morning. Bailey was holding steady all week until last night when she gained 1.5 pounds. But she's still in rhythm! Yeah!! That's an accomplishment. Now we just have to get her fluid off. Poor thing really does look pregnant. She can climb the stairs now, but when she forgets something and needs to go back up, she'll ask one of us to get it for her. She poops out pretty quick. She went to the grocery store with me last night and rode in the wheelchair.

She's officially set up for a Homebound program for school. Two of her teachers called today to set up times to come out and help her with her homework. Her English teacher came out tonight. It's so nice to get help. We still really have no idea how long Bailey will be out of school.

Well, I'm tired. I'm gonna go put my feet up. Be sure and set your VCR's or DVR's or TVo's, or whatever you all might have, for this Thursday at 11:30 p.m.! Hopefully it won't get bumped for some other breaking news.

Have a good evening!

Angie