Home and Well

Boy, it's nice to be home. Bailey's feeling well. Still not back to her old self physically, but seems to be well on her way. She's down 1.5 pounds this morning. Yeah! Slow and steady. That's just fine.

I was in the middle of painting our fireplace when Bailey went out of rhythm last time. I put the paint brush down when Bailey said, "Ah-oh. My heart rate is 109." Then a 10-day interruption for a hospital stay, and I got to finish today. Did the laundry, grocery shopping . . . and slept in. That was the best part. It was so nice to sleep in my own bed. Bailey slept well too . . . except for when she woke up around midnight choking on her spit! That was fun. I was so disoriented, I remember jumping out of bed and asking her if she needed a drink. She said yes, but I just stood there with my arms out and couldn't figure out where to find a glass! We were a mess. I think I was looking for a nurse's button. Ha!

It was so pretty out today. I'm glad I stayed home today. We had lunch on the back porch under our umbrella. So pretty! Planning on returning to work tomorrow.

Hope everyone is doing well. Keep in touch!

Angie

Enjoy the Pics!

Bailey and nurse Amanda beading.

Bailey barricades herself in the bathroom after she begins the water fight.

Dr. T takes a nurse hostage and escapes down the back stairway.

Dr. Weissbluth brings Bailey origami paper and shows a little of his talent

Bailey and the shrinky-dinks.

Dr. Barkimer and "Dr. Matt" and the shrinky-dinks.

Nurse Angie, Scott and Nancy and the shrinky-dinks!

We DID get to see a sunset!

"Dr. Matt" shows "Dr. Peter" the lost art of gluing your palm.

Bailey's shrinky-dink gift to Pappa Tom.

Bailey takes her I.V. pole for a walk.

Bailey gets the "P" award!!

Dr. Bramlett begins the origami competition . . .

Dr. Barkimer and Dr. Weissbluth take to the challenge . . .

. . . and "Dr. Peter" and "Dr. Matt" give it a shot.

Dr. Bramlett shows Bailey how to make a dollar bill bow tie.

Ok. This is "Dr. Matt's" origami flower. Hm.

And this is Dr. Weissbluth's camera. I'm not seein' it.

Bailey's weapons are ready for Dr. T.

Dr. Ebenroth shows off his ability to juggle hospital tape to help Bailey complete her scavenger hunt.

We're Going Home!

Distemper Shot

Today was a lot of fun. We played a whole bunch and didn't really get much homework done, but I think it's ok to have a day like that. Bailey's weight was down .1 pound. They're not too concerned about not losing more because she's still peeing quite a bit. I'm wondering if a lot of it is because her appetite is back up. She actually gets hungry again. We don't know. They're continuing to keep close track of things. They turned off the milrinone today, so she's off all I.V. medication. That's so nice, because we can just get up and go now. We took two walks downstairs today to the library, the cafeteria, the gift shop, etc. We were looking through the library windows at a beautiful dark pink shrub in the courtyard (it looked like maybe a rose bush, not sure) and noticed a giant spider hanging from a web right on the other side of the window. Startled us pretty good, but Bailey's still in rhythm! I think I fell out for a few minutes, though. I'm good now, thanks.

Dr. T popped in to check on Bailey today. Boy, they razzed each other. Dr. T ended up "ordering" a 2.5cc distemper shot for her. Ha!

Our entire medical team, with the exception of Dr. D, was in our room today sharing their talents in origami and paper airplane construction. The competition extended out into the hallway where one airplane crashed into the ceiling; one crashed into a pole; and one landed in a trash can. Happy to report no eyes were poked out. The most impressive "work of art" would have to be Dr. Bramlett's stealth airplane; and the saddest "work of art" would have to be Dr. Weissbluth's camera. Don't worry . . . I took pictures! Ha!

Saw a really good movie today - "October Sky". It was really good! About 4 teenagers from a poor mining town in West Virginia who taught themselves how to build rockets. It's based on the true story about Homer Hickam, who went on to train astronauts at NASA. I highly recommend it.

Tom had a scare this morning. Marissa woke up about 5:30 and came running into our bedroom crying and panicky saying she couldn't breathe. Sure enough, Tom took her to see Dr. Vik today and she has croup. Marissa is very intelligent. I asked her on the phone today about her visit to the doctor, and she said, "Yeah, Dr. Vik explained to me that I have croup and at night my throat got smaller so it was really hard for me to breathe. But she gave me some medicine for 2 days to help my throat not get smaller. But if it does, I have to go see Daddy again and tell him, but I won't be scared because I know what it feels like now." Doesn't that just bring tears to your eyes? It did mine. I miss being home so much. Can't wait to get back, but I am perfectly fine here while Bailey continues her recovery. But now Marissa can't come see us here at the hospital for the rest of the week. It's a sacrifice for the whole family, but we'll make it.

Dave, our night nurse, is with us tonight! We haven't seen him in months! He said he's worked 4 days in September, but it must have been the only 4 days that we haven't been here! It's good to see him. We missed him.

Thank you, Dee and Mark, for helping us out tomorrow night. You're the best! And hope to see you soon!

Angie

Down 12 and 12 To Go!

Bailey's lost 12 pounds! Yeah!! But her belly is only half gone. She's eating so much better - it's amazing how much easier it is to eat when you don't have 25-pounds hanging around your belly. No word yet about going home - could be 2, 3, 4, 10, 12 days? I just pray that she continues doing well and we have no other setbacks . . . ever. Her heart is still in rhythm. Yeah! I also pray that that continues for a long, long time . . . forever.

Got some algebra homework! Yeah!!

I got to take a nice walk today with Debbie M. and Stephanie. It was very nice and a much needed short get-away for me. Bailey didn't mind - she was being entertained by Corey from Child Life. She even let Nancy, her nurse, change her PICC line dressing while I was out, but Bailey did say she wouldn't do that again. Ha!

And now . . . for news we've all been waiting for . . .

I talked with a correspondant from ABC News Nightline today and they are scheduled to show parts of the documentary on Nightline (11:30 p.m.) on a week from Thursday (Oct. 4th) -- barring any unforseen urgent news issues. And, they are flying out here from New York on Monday to interview Bailey and "hang out" with her for a while. Isn't that cool? She's so excited. They said it doesn't matter where she is -- at home or still in the hospital. They'll go to wherever she is. That was nice to hear, that there's no pressure or disappointment involved if we are still here. But I'm hopeful that if Bailey continues losing fluid, we might go home this week. We'll see.

So, while we were stunned and speechless about the Nightline news, I found another message from someone here at Clarian that said Bailey's name was chosen out of a hat to do the coin toss at the Oct. 7th Colts game. Now, that's cool, too, huh?! Don't know any details about that, as it was just a short message, and I left a message in return, so I still have yet to get all the information. But I'll keep you posted on that too!

So, that's the scoop for now! Bailey walked all the way down to the cafeteria and all the way back today. I asked her if we needed to take the wheelchair, and she said no. She was right!

Good night everybody!

Angie

Down Another Pound!

Total of 10 pounds! and still peeing! We're not disappointed in the 1 pound (as opposed to 3 pounds) because they said it would come off quickly at first and then slow down as it got down to the fluid that's been there a while . . . so this must be where it slows down. But Bailey is feeling great, eating great, sleeping great, breathing great and looking great. Such a good feeling.

Today was pretty boring really. We did some jewelry, watched the Colts game (yeah!), watched a couple movies, took a nap, played some Skip Bo . . . and that was pretty much it. It's a lot different on the weekends around here than during the week. Hardly anyone comes around at all on the weekends.

Have a good night everyone!

Angie

Down Another 3 1/2 Pounds!

Pretty slow day of shrinky dinks, movies, and naps. Bailey's lost 9 1/2 pounds as of her morning weigh-in. She's now on the oral form of her new diuretic Bumetanide and still peeing. Life is wonderful!

Talk to you tomorrow.
Angie

Down Another 3 Pounds!

We're still peeing! Such a good day. Bailey is down 6 pounds. She peed off 4.5 litres yesterday, and is steady on that course again today. Woo-hoo!! And! Better yet, the kidney doctors came in this morning and said her kidneys are doing remarkably better. Her numbers aren't quite her normal, but they are headed quickly in that direction. AND! Our resident, Dr. Barkimer, came in today and delivered the news that radiology and the renal people conferred with each other and agree that what the renal guy saw yesterday as calcium deposits are not, after all, calcium deposits. YEAH!!!! Isn't that incredible? We've been dancing on cloud 9 all afternoon. And Bailey is feeling so much better. She hasn't even taken a nap today. She took her first walk and went all the way down to the cafeteria. She hasn't walked that far in weeks. I just can't tell you how good this feels. She's not below 100 pounds yet, but well on her way. Many, many prayers of thanksgiving were said today.

We've had a fun day today with shrinky dinks. The rounding cardiologist switched today, and Dr. Ebenroth came in with our group of medical people for morning rounds. He and Bailey were exchanging stories about shrinky dinks and his experience with nearly blowing his hand up as a kid. I'm not quite sure how one related to the other and it sounds pretty horrific, actually, but somehow we all ended up laughing quite a bit. Sometimes the sense of humor takes a turn for the worse around here. Ha! But maybe that's necessary to get through the roller coaster ride.

Didn't do much homework today, because she's finished all she has so far. Still waiting on her first algebra homework. So we spent about 6 hours of the day on shrinky dinks. She had me working on them too. It was quite fun. They really are great entertainment. You all with kids out there should think about these for Christmas gifts. (Adult supervision required, of course, while using the oven.) We even colored a full sheet of paper and shrunk that down. It did end up slightly stinking up our room with a burning plastic smell, so we won't be doing that anymore. But the end result was still cool!

Riss and Josie came to spend the night with us tonight. So good to give them hugs. We miss them so much. Don't know when we'll be going home. Maybe 2 or 3 or 4 days? Time will tell. We told Dr. D that we weren't in any hurry - we just want Bailey feeling good again. He's still confident he can pull her out of this - that this is all due to the amiodarone that sent her into a downward spiral. Again, time will tell.

Our med student, "Dr. Matt", is taking the weekend off. He's worked 12 days in a row, and now gets a well-deserved weekend off. Dr. D deserted us this weekend for a Kentucky horse farm. You know how I feel about our medical staff deserting us! And Dr. Bramlet has been in St. Louis, I believe, for a medical conference but will be returning tomorrow. We've missed him - although he hasn't been gone long (just since noon yesterday). But Dr. Ebenroth, Dr. Barkimer, and Dr. Matt have taken good care of us. And, of course, the nurses are all gold-star!

I just pray that this positive upswing continues with great force. Hey, Dee and Mark! Maybe you'll see my blue van again someday soon! Miss you guys! Give the kids a hug.

Good night everybody!
Angie

Down 3 Pounds!

Oh what a beautiful day. Bailey was down 3 pounds this morning for her weigh-in and has been peeing all day long. Every time someone walks through the door, their first words are, "Are you still peeing?" They did slow her down a little bit - the body doesn't like losing too much fluid too quickly - so tomorrow's weigh-in might be a little less, but hey! It's progress. And we like progress.

Although we got a report yesterday that the kidney ultrasound was fine, I guess there was some evidence in the scan this morning of calcium build-up in the kidneys. This was most likely caused by the diuretics which are known to cause calcium build-up, and the whole issue with the flutter and fluid-retainage all work together to cause blood circulation issues. And, there is also evidence of low red blood cells, which are produced by bone marrow which process starts in the kidneys. So. Basically, the calcium that's in there won't go away and may or may not cause problems down the line, but they can use a certain diuretic that will lessen the calcium build-up from here on. And, for the red-blood cell issue, Bailey has to get an epogen shot 3 times a week, starting tomorrow. She wasn't thrilled about that, but the first thing she said was, "It's not a lovenox shot." And she had the epogen shots when she was here on the Berlin, so she knows all about it. It didn't leave too bad of a bruise, like the lovenox shots did.

We were a little caught off guard when the kidney doctor came in this afternoon to explain things to us. In fact, we were pretty upset, but we asked that Dr. D come up and tell us his "version" of things, and that helped a lot. We just communicate with him well, since we've been with him for 15 years, and also he could put it into perspective with everything else that's going on. We'll just take it as it comes, trying not to worry about anything that isn't something to worry about yet. (Boy that was profound. Ha!)

ShrinkyDinks are back! Bailey had Matt (our med student), Dr. Barkimer, Dr. T, Dr. D, 2 nurses, and Scott and Nancy all hovered around a little toaster oven (at different times, of course) watching pieces of plastic shrivel up and flatten out. It was hilarious! I got a few pictures, so I'll post some as soon as we get home. Everyone seemed impressed except Dr. D and Dr. T. We'll have to work on them. Another resident, Dr. Weisbluth, brought in bright colored paper to show Bailey some origami, and then another resident came in and said she was bringing in some crafts tomorrow that would top the origami. I think we have a crafting competition on our hands.

Matt helped Bailey with her Spanish homework today. And Dr. Hoyer helped with a chemistry question. As soon as she gets some algebra homework, we'll find someone to help with that too. (They do have real tutors here, but it's pretty entertaining to get these highly-educated medical people working on homework. And they do give some great advice on colleges, college courses, etc.) We'll miss these residents and med students when they move on after this month. It is by far the best group we've had. They have great medical careers ahead of them, and we're honored to be a part of their journey.

Anybody watch Survivor tonight?! We're huge survivor fans. We already have a favorite player . . . James. Go James!

And go Bailey! Keep peeing!

Love you all!
Angie

Such a Good Day

She's peeing! They tried yet another kind of diuretic (bumetanide, or something like that) this morning at 9:30 and it worked! She's had total output today of over 3000 ml (3 litres). To compare, yesterday she had 450 ml. I've been so worried about her kidneys these past several days since she wasn't responding to all the diuretics which had worked before, so I was telling myself that was a good sign this morning that she was finally responding. But I was still guarded. That's one thing about this place . . . you grasp on to all the victories (both big and small) because you never know what's around the corner. But the doctors were still concerned too because they ordered a renal consult. So the kidney doctors came to visit and recommended two tests - an ultrasound and some kind of dye test.

We all also decided to get a pic line put in because her 3rd I.V. wasn't going to hang on much longer. So, this afternoon we went to get a pic line, which was pretty traumatic for Bailey. She was quite scared because she remembered that they stitched those in. So, we got through that and went on to ultrasound. Then we got back upstairs to our room after being gone about 1 1/2 hours, and Dr. D was standing by our door. Bailey, not yet hooked up to monitors, told him to go out in the hallway (where the monitors are) and see if she was still in rhythm. We all just kind of looked curiously at each other and I was the only one brave enough to ask, "So, do you think you're not?" She said she wasn't sure but felt PVC's or something. So she got hooked up and they ordered an EKG, and YEAH!!!! she was still in rhythm. Dr. D said he thought he was going to have to go downstairs and smack the interventional radiology guy for throwing her in flutter (which I guess is a legitimate risk when getting pic lines). Ha! Glad he didn't have to do that. So THAT was a huge relief. And, then, about 1/2 hour later, he came back and informed us that the ultrasound looked good. YEAH!!!!! Yet again, such a HUGE relief. She still gets the dye test in the morning at 8:00 (I'll have to wake up early!), but Dr. D didn't seem too worried about that test. He said the results of it wouldn't change their plan of action.

I tell ya, I felt like running down the hallways shouting "She's peeing! She's peeing!" About 10 or so medical people were standing outside Bailey's room during their rounds this morning (they were gathered there to discuss Bailey) and through the window they saw her go into the bathroom for a while and then come back out. Dr. Bramlett peaked around the corner and said, "Did you go?!" We all laughed and he said, "How does it feel to have a whole group of people wanting to know if you peed." Ha! I told him we were just going to announce it on the PA system. I think everyone in the hospital now knows that Bailey's responding to the diuretic. We're so proud!

(Sorry, I hope I'm not offending anyone by using the "p" word. We're just so excited.)

So she had an echo yesterday that was better than the one before; she's been losing fluid; her kidneys are functioning . . . I'm not sure if we could have had a better day today. It must be a direct result of all the prayers out there because I know there are lots of them. Thank you all so much for being there with us. You are all so special and we are so grateful for each and every one of you. We are enjoying the comments - they give us a daily boost. Thank you!

We're hoping for another good day tomorrow. Not sure how long we'll be here still - we're thinking at least a few more days, give or take a few days. (How's that for accuracy?) I'm happy to stay here as long as we need to to get a handle on this fluid. They say it might come off quickly (like this) at first but will likely slow down and hit a wall at some point because it's taken a long time to accumulate all the fluid, so it will still take awhile to get it off. They can't get it off too quickly because it could drop her blood pressure, increase her heart rate, and cause dehydration and then flutter. We keep hearing "a fine line" in nearly every conversation we have with a medical person.

I'm so grateful for this place.

Good night, everyone! I think I'll sleep well tonight.

Angie

Still Not Much Fluid Coming Off

Still not much fluid coming off. However, the echo went very well. Dr. D said it was better than the last one she had. He didn't go into specifics of numbers, but I took that as a victory. And, Bailey's still in rhythm. So, that's good news.

But I think Dr. D is a little stumped with the fluid. But he's bound and determined to get it off. I'm ready to see some progress in that direction.

Dr. T popped in to check on Bailey today, and, sure enough, they started a water fight. Bailey started it with a saline syringe that was laying next to her sink. So he "retreated" to get a weapon larger than hers and she ran to the bathroom dragging her I.V. pole behind her and locked herself in the bathroom. Big chicken! So, of course, he hung around the unit until she came out; she somehow stole his weapon; and he took a nurse hostage, back up to the exit stairway and disappeared. Dr. D came around when this was all going on and said, "Well, at least you're feeling good enough to cause trouble." Ha! It was much needed entertainment.

Her poor little shirt she had on was so stretched tight and uncomfortable . . . I had to go to the gift shop and buy her a Riley shirt in an adult-large. She said, "Ah! I have room to breathe now." And, 2 I.V.'s went bad today, so she had to get another one, and this one is being a little fickle. Don't know how long this one will last - hopefully for several days.

Well, gotta go. Bailey's having a little trouble breathing again as she lays down. Please, please, please let the fluid come off.

Love you all, and thank you for the prayers!

Angie

Forgot to Write Last Night

So sorry! I know some of you are worrying. But I just forgot to write last night. I don't think that's ever happened before.

Bailey's cardioversion #17 went well yesterday. Back in rhythm and, as far as I know, still is. They now want to get some fluid off. It doesn't seem to be working though . . . she weighed in a pound and a half heavier this morning. She had shortness of breath last night trying to go to sleep and they gave her an extra dose of I.V. lasix, but she hasn't peed yet. I really don't understand it all. I don't know if that's a really bad sign. Dr. D's doing an echo today to check her heart function. I don't want to go anywhere until they get this fluid under control. I hope they don't try to send us home.

She was all worried about ISTEP, which starts today. Her counselors at school told her not to worry about it at all because she's a good student and will not have a problem passing it, and will get 4 more chances to take it during high school. For some reason, she was still worried about it, so we had a little rough time discussing it yesterday. We finally agreed that keeping up with her homework was much more important at this point. So, she got a lot of homework done yesterday. She still, however, has not gotten any homework from her algebra teacher. Don't know what's up with that! All her other teachers are being very cooperative and e-mailing most everything.

Well, hope we're in for a good day. Bailey's a little down because of her weight, and I feel like vomiting because of it. We would appreciate some prayers today.

Love you all and miss you,
Angie

Trying to Get Some Fluid Off

Today was a quiet day. Watched 2 movies while Bailey worked all day long with her beads. They're trying another diuretic in addition to Lasix, but now I can't remember the name of it. It starts with a Z (or maybe an X, if it's pronounced as a "z"). Ziroxilin, maybe? It's not getting the fluid off very quickly, but she is going to the bathroom quite often. Her legs, ankles and feet are swelling up today. Not sure if that's additional fluid, or just fluid moving around. She'll get weighed in the morning, so we'll see then if she's losing any weight. I think the plan is to get cardioverted tomorrow. I would like to see them keep us here to get at least half her belly off, but that's just for my peace of mind. Her belly skin is getting stretched so far now that it's starting to look shiny. I just feel so bad for her. She's so uncomfortable, but doesn't complain. She's my hero.

That's pretty much it. Just hanging out with our medical team. Saw a little bit of the Colts game. Took naps. You know the drill.

I'll talk to you later!

Angie

We're Back

We're back at Riley. Discovered Bailey was out of rhythm last night and had gained a pound yesterday. Her belly just keeps growing now. She's up 23 pounds. She's feeling good, though, besides that. I'll keep you posted and write more tonight.

Angie

More of the Same

Bailey's feeling really good except for her belly. It's causing her back muscles to hurt. She's wearing my sweatshirts because hers are too tight. She hasn't lost any weight, but still hasn't gained either. I consider that a small victory, since she gained about a pound a day while we were in the hospital.

She sees Dr. Darragh on Monday for a follow-up. I'll keep you posted.

Have a wonderful weekend everybody!
Angie

Holding Steady

Today was pretty much the same, I think. Bailey's feeling really good, mentally. Her belly is still causing her problems -- difficult to walk, can't eat much, gets out of breath easy, etc. She hasn't lost any weight yet. If she did lose that 1/2 pound yesterday, she gained it back. We're still sleeping downstairs in the living room because she can't make it upstairs without a struggle. She called me this afternoon at work and asked me to listen to her heart when I got home because she thought she might be out of rhythm. So, that led to a wonderful drive home -- nausea, lightheadedness, and my own heart palpatating a bit. But I walked through the front door and she said with a smile, "You don't have to check me, Mom. I'm still in rhythm. I was just having some double beats." What a relief. Every 24 hours in sinus rhythm is a HUGE victory for us.

Bailey even helped me cook dinner tonight. She had to sit down to do it, but at least she was up to helping me out. And she's even done some homework today. I do believe that if we could just get rid of her belly, we'd be doing really, really good.

Looking forward to the Heart Walk on Saturday. If, by chance, there is anyone out there feeling compelled to help, you can always visit this website to donate on-line. Just click on a team member's name, and it will walk you through the donation:
http://heartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=212061&team=2006541

Also, got some info on the documentary viewing dates and times for the Heartland Film Festival . You can follow this link for that info:
http://heartland.bside.com/?_view=_filmdetails&filmId=32296066

And I will keep you posted on the TV date and time.

Good night!
Angie

Small Victories Are Great Victories Too!

I would say today was a pretty good day. I ventured off to work for half a day. Boy, it was hard leaving Bailey here. I knew she was safe here with Tom and I could be home in 15 minutes, if need be. But it was tough leaving her, but I thought it needed to be done . . . for all our sakes. I knew I was stressed when, on the way in to work this morning, a white Plymouth Voyager cut me off in traffic and I started crying! Ha!! I guess a much needed and long-awaited stress reliever for me. It was nice to get back to work and give my mind a chance to think about something else for a few hours. And Bailey did fine. Her appetite has been better today than it has for many, many days. She still can't eat a whole meal at once, but she's eating several snacks a day. And! Best part, is that she thinks she's down half a pound from yesterday. We have scales with a dial, but it does seem to be pretty accurate. So that's certainly a victory. And she is definitely getting around more here at home than she did in the hospital. She ventured outside in the backyard with me while I pulled some weeds from the garden that sprung up while we were in the hospital. (Cool thing about that, though, is that I found 3 monarch butterfly caterpillars for Marissa to take into her class and watch them turn into butterflies. They've been studying monarchs. We researched it and set them up with a nice little habitat that we are hopeful is just what they need to survive and change into butterflies. She's SO excited!) And that is definitely a victory. She still has quite a ways to go before she's back to some semblence of normalcy, but it is such a relief to see progress in that direction.

The American Heart Association's Heart Walk is this Saturday. Bailey still wants to go but she doesn't think she'll be able to walk 3 miles. Well, of course not! She has trouble with the stairs at home. So, we're borrowing a wheelchair from Grandma and Grandpa Wooten's church so she can make it to the Heart Walk. She really is an incredible little lady.

I so enjoyed my afternoon and evening spent working in the yard today. Nature is my therapy - even mowing the grass. I have my best devotionals while mowing the grass. I was just thinking today about God not giving us more than we can handle. I think we can handle a lot more when we rely on Him to carry us through. There are a lot of my friends out there who are getting hit pretty hard by life right now. We can get through it, you guys. I love each and every one of you and you are all in my prayers.

Good night everyone!
Angie

P.S. Bailey's documentary ("Heart to Heart") is going to be in the Heartland Film Festival here in Indy in October. I will get info together for you on the time(s) and place(s) it will be shown. I understand it's up for an "Audience Favorite" award, so be sure you attend and vote! This could be great exposure for the advancement of pediatric medicine in our country.

And, the documentary (or at least portions of it) is very close to being nationally televised -- it looks like maybe the last week of September. Yes - this month! I will keep you posted as to the time and station for that too. I'll let you know when I know!

A Few Pics

Bailey exchanges some tunes with our med student, Matt.

Bailey and Matt

Josie, the birthday girl

Bailey works hard on Josie's shirts for all her friends.

The Shirts!

We're Home

Today went well. Bailey did fine coming off the milrinone last night and has now been in rhythm for more than 24 hours! She hasn't lost any fluid, but the doctors say that will take a while. They didn't want to give her anymore I.V. lasix for risk of dehydration - been there, done that. Not much fun.

We have the best medical team in the world. And our resident (Dr. Berkimer) and our med student (Matt) were even wonderful. We've seen lots of residents and med students come and go, and these two were, by far, our favorites. They have great medical careers ahead of them. I would consider ourselves blessed if they chose pediatric cardiology and stayed at Riley. So, in case you might be reading this, guys, thanks so much for all your help this past week and for taking such good care of us. We truly appreciate you!

And Dr. Bramlet and Dr. Darragh were wonderful as ever. We always feel very safe in their hands. In fact, Bailey and I were a little nervous about being sent home today with all the fluid around her belly that she has, and Dr. Bramlet came in to give us a "pep talk" about it. He was very positive and basically, they trust us to keep the posted and we trust them that they wouldn't send us home if they thought it was not a good idea. So, we just hope and pray that Bailey's fluid will go away. It will take weeks, I'm sure, but as long as there's progress in that direction, we'll be fine.

Bailey won't be going back to school for a while still. She has so much additional weight that she can't walk very far. She get short of breath and feels like her sides are gonna split. We're hoping to set up some kind of homebound school program where she can get some tutoring and stay current on her school work. I'll have to get that moving tomorrow.

I'm hoping to get back to work tomorrow. Tom works nights, so he'll be here at home with Bailey. I'll be a little nervous at first leaving her, but I'm hopeful it's the right decision.

Wow! What beautiful weather today. Last we stepped outside, it was 90. Such a refreshing change. Hope you all get a chance to enjoy it.

Thank you for all your prayers and support. It helps us more than you could ever know.

Angie

Good Morning

Still in rhythm (yeah!), but no change in fluid yet - waiting patiently. Have a great day!

So Far So Good

Bailey took a nice 2-hour nap this afternoon. She's got a sore hand - her IV was starting to go bad so the cath lab replaced it while she was under anesthesia. We're so hopeful that she stays in rhythm that every time a medical professional walks through the door, I try to read their eyes to see if they have bad news about flutter. (I can't see her rhythm in our room - they have her on a monitor that only the telemetry room can see. It's probably good for me, or I'd be staring at it every minute of the day.) Our med student, Matt, has been coming in every couple hours to tell us the rhythm still looks good. We love Matt. Ha!

They went down on the milrinone at 5:00 and will be turning it off at 11:00 tonight. She will hopefully tolerate the weaning. So now that her heart is in rhythm again, hopefully the fluid on her belly will start to go down. Dr. D said it will take days for it to go away. We might go home tomorrow if all goes well today, tonight and tomorrow, but I told Dr. D we wouldn't hold him to that. I feel pretty uncomfortable going home before she loses any fluid. And Dr. B said not to get too down if she goes back into flutter at some point because we're in a transition from the old med to the new med and her worsened heart function (hopefully due to the old med). I'm glad he told us that because I could see myself flipping out if she goes into flutter again.

Dr. T's been popping in nearly every day to check on Bailey. He can quickly tell when she's not feeling good because she doesn't give him any grief. I like it better when she feels good and they go back and forth at each other.

We're trying to get some homework done, but it's kind of hard when she's not feeling the best. She is feeling better, but still not quite herself. Even if we go home tomorrow, Dr. D says no school at least for the rest of this week. Maybe she'll feel like doing more homework when she gets home.

Thank you all SO MUCH for the support and love you show through your comments. They all brighten our day. Helps us feel like we can make it through this.

Love you all!
Angie

(Lynn, hope Will is doing much better!)

Cardioversion Went Well

Now just watching and waiting.

Angie

Hanging in There

Just hanging in there waiting for tomorrow's cardioversion. Bailey had kind of a bum night last night - kind of a hard time breathing for a little while and then woke up around 2:00am nauseous. Ended up getting sick but then seemed to sleep ok the rest of the night. They went down on her milranone but her heart rate went up a little, which they don't really want right now, so they went back up on it this morning. She's still getting a relatively small amount but they want to keep that delicate balance between the milranone, lasix, and all her other medication right now. She was up a pound from yesterday. I can't wait for her to lose her belly - it really is uncomfortable for her to walk.

Josie and Riss visited us today. Riss got injured in the gift shop. She was reaching over her head to replace a book on the shelf she was looking at. She didn't get the book all the way on the shelf and all 4 or 5 of them came tumbling down and slid right down the bridge of her nose. She has a couple nice raw spots. And she didn't even cry. Her eyes teared up, but she held it together. I told her it was ok to cry if it hurt because, if it was me, I would be bawling by now. She thought that was funny. Then went to the library to get some books and a movie/documentary about the International Space Station. Riss is very interested in space. Not sure where the interest came from, but she likes the space shuttle, rockets, zero gravity . . . she is really interested in learning a lot about it. Who knows? Maybe she'll be a little astronaut someday.

Well, I'm hoping for a better night tonight and a very successful day tomorrow. Hopefully the cardioversion will go well and Bailey's heart will stay in rhythm with the new medication. This is cardioversion #16, and I'm more nervous with this one than any of the others. Don't know when we'll get to go home. Maybe tomorrow, maybe Tuesday ???? - time will tell.

I'll keep you posted.
Have a good night everybody!

Angie

Josie is 13!

Josie got to have her birthday party/sleepover with her friends last night. They are all such good girls - they had lots of fun. Bailey called last night at home to tell me her thighs were swelling, so I didn't rest too well. My heart was back at the hospital with Bailey, but I did enjoy being at home for a short while. I returned today around noon with Josie and Marissa, and we continued to celebrate Josie's birthday with Bailey. We had cake and presents, and lots of fun. Shared her cake with doctors and nurses.

We're just hanging out today waiting on Monday's cardioversion. Bailey actually weighed a little less this morning (1/2 pound) but, hey, that wasn't a gain! We celebrate even the little things. We've taken a couple walks around the Heart Center today. It's hard for her to walk with what feels like a jelly-filled innertube around her belly, but it's good exercise. She doesn't complain at all. And her dad and Nancy brought us BBQ ribs tonight. Oh, wow. Those were good.

Our med student, Matt, told us that every year the med school has a talent show for charity and he has a friend that writes his own music and puts together a little group of stringed instruments to play it. He asked if Bailey would be interested in playing her violin and, of course, she is, so Matt went to ask his friend if he would be interested in having Bailey join them, and he is! She is SO excited. That will be so much fun - she's already looking forward to it. I'm not sure when it is - maybe the spring?

Well, Bailey followed me in here and she's staring at a drop of saline just hanging on to the bottom of the IV tube. We are easily entertained! She says it looks like a uvula. Ha!

Oh!!! She looked away just for a split second and it dripped! I wonder how long it will be before we get another drop just hanging there. Can't wait!

Bailey's yawning. Gotta finish her walk and get her to bed. Have a good Sunday everybody! We hope to be home soon.

Angie

Don't Get to Go Home

Well, Bailey doesn't get to go home today, but I do. In fact, we're pretty certain Bailey is staying at the hospital until they cardiovert on Monday. They just can't seem to get rid of any more fluid, and she has about 15 pounds left. And she's still in flutter, so things aren't working quite like they should be. So, she's perfectly happy to stay at the hospital - she feels much safer there. One thing we've seen these past 2 years is that things can change very quickly - for better or worse. In fact, last night her B.P. dropped and she started feeling pretty bad very suddenly. And, when they bumped the milranone back up and started fluids, she improved dramatically in 2 minutes . . . seriously. I don't think they're making any more changes over the weekend, so we're hoping for an uneventful few days.

I'm actually writing this from home. I came home to help Josie with her birthday party - we're waiting on 5 more girls to show up. The pizza's ready to pop in the oven, her birthday cake (which is cheese cake - that's what she requested) is ready to be cut, the snacks are on the table, and the decorations are going up as we speak. Tom did all the grocery and decoration shopping, and Nancy helped me with the birthday shopping (thank you Nancy!), and Bailey finished the T-shirts. Very, very cute. She even made Rissy one - didn't want her to be left out. I'll take a picture of the girls with their T-shirts on and post it very soon. So, we'll have the party tonight, then we're returning to the hospital by noon tomorrow and we'll celebrate with Bailey. Sometimes you just gotta do the best you can. Josie wants to go to the Franklin Central High School homecoming game tonight with her friends, but don't know if that's gonna happen - it's raining pretty good right now. Knowing Indiana, though, it could be dry again by 7:00.

I'd better go help decorate. Just wanted to keep you posted. It's really, really hard being away from Bailey right now, but I'll return soon. And she's already called me on my cell phone - one of her favorite nurses, Jenny, is working tonight so she'll be fine. And her dad is staying with her too - don't think I left her completely unattended.

Love you all!
Angie
(Jill, in case you might happen to be reading this, you are in my prayers.)

Brownie Thursday

Brownie Thursday was back today. The nurses were so happy! There were only 2 nurses working today who knew what Brownie Thursday was and they ran around explaining it to the others. They were so cute. Brought back memories for all of us. Thank you, Sue! And thank you to Vickie, Tami and Diane for all the food. It is wonderful!

Bailey had fun today. Scott brought her guitar in and she had a "jam session" with Matt, our med student. He's such a good guy. He plays guitar too, and they were teaching each other some of their music. He's on the Heart Center for the month of September learning as much as he can about cardiology. I think he really enjoyed talking to Bailey about her life experience and especially the last 2 years. It's been fun getting to know him. And we have a great resident too. Dr. Barkimer is taking great care of us. He doesn't hesitate to stay in contact with Dr. Darragh and Dr. Cordes, the cardiologist on service, when Bailey starts not feeling so well. We think he would make a great cardiologist.

Today was a pretty good day. Bailey's weigh-in this morning went up a little bit again, but she was still feeling good. She spent all day working on T-shirts for Josie's birthday party and all her friends. She's so sweet. She feels bad about being in the hospital during Josie's birthday and potentially ruining it (although I've reassured her that she's not ruining anything), she wanted to make the T-shirts so they could wear them to the high school football game tomorrow night. They really are fun. She's done a great job and has worked all day on them. She did a little bit of homework this morning but when Aunt Vickie delivered the T-shirts, she jumped right in and is just now putting them down for the night.

They went down on the Milranone in anticipation of weening her off of it and sending her home tomorrow and she got an extra does of I.V. lasix today to get as much fluid off as they could, but her blood pressure dropped really low this evening and she started not feeling so well for a while. So they went back up on the milranone and gave her a little bit of fluid because they thought she might be a little dehydrated. She started immediately feeling better again. So, I don't know if this means we might not be going home tomorrow or what. We'll see.

Hope you all are having a good evening. Lots of Colts ware around the hospital today.

Angie

A Pretty Calm Day

Not as much visiting the bathroom today as yesterday - for some reason, the lasix and the milranone didn't seem to affect her like it did yesterday. And she woke up a pound heavier this morning, even with a bunch of fluid out yesterday. However, she received a dose of lasix about an hour ago and she's gone 3 times already. So that's good!

It's really tough not knowing where we are going to end up in this little bump in the road. It's definitely a time of putting all trust in God because we know that he has known the plan for a long long time. Once again, we just have to see how it all plays out. Nighttime is the worst for me. You know how it is at night when your mind seems to have a mind of its own - lots of thoughts pass through that are full of fear at the moment but get back to reality when we wake up. So, I'm not sleeping too well. And today, for some reason, I haven't had the desire to eat. I know, I know. I can hear you all right now. "You gotta eat!" I'm eating. My jeans are not as tight as they were last week (which is a good thing), but have no fear - I'm eating. Just had a rough day today.

Bailey's working hard on her homework - there is lots of it. The laptop is coming in very handy, and they even brought her a flash drive to use for her essays. I don't think she felt quite as good today as she did yesterday, but it just might have been worrying about not as much fluid coming off today.

So, Dr. D's new plan: They are leaving her in flutter to give the newest medication enough time to build up in her system. They don't plan on cardioverting until Monday or Tuesday. If her fluid remains stable these next 2 days, they might send us home on Friday for the weekend and to return for the cardioversion on Mon. or Tues. Or, if they decide she needs to be monitored, we'll stay here. Josie has a birthday Saturday. She has planned an overnight party with 6 of her friends for months now. So, our plan is that even if Bailey is still here Friday night, I will be going home to help Josie with her overnight party and will return to Bailey on Saturday. I'm not sure if we're hoping that Bailey goes home Friday or not - she feels much safer here and she doesn't like being in flutter. She's never been in flutter for this long before - I think it makes us all a little nervous. But that's OUR plan - we'll see what God's plan is, huh?

Bailey just strolled down here with her I.V. pole and told me I have to hurry and get back to the room - she's watching some show on TV where they are sculpting things out of fruit and somebody just dropped theirs on the floor. She's telling me to "Hurry! You've GOT to see this." And then shuffled back to her room.

So, I must go!

Love you all and a good night!

Angie
(Sorry - I'm not even proofreading this! Hope it's not too bad! Gotta run!!)

Feeling Better

Well, it was good to see Dr. Darragh and the rest of our normal staff today. It's a pretty skeletal crew on weekends and especially holidays. We arrived at 11:00 this morning and were met with Dr. Darragh right away on the Heart Center. He gave us a plan. They started an IV medication called milranone that she's been on before and it helps her heart beat stronger so more blood gets circulated through her entire body, more specifically her kidneys (which will result in her spending a lot of time in the bathroom getting rid of fluid) and her stomach (which will allow her appetite to come back and she can eat more). It's working. She's eaten more this afternoon and evening than she has since Thursday and her stomach is feeling much better. Don't know if she's actually lost weight yet (she weighed in today at 6 pounds more than when we were admitted on Thursday, so she's been gaining about a pound a day) but she was able to relax enough to take a nap. It's so good to see her feeling much better already. Dr. T popped in and checked on us a few times today. Bailey was passing M&M's out to her doctors. Dr. Bramlet (a cardiology fellow) has quickly become another one of her favorites. He also makes us feel completely safe and taken care of when he's around. He had a few days off this holiday weekend so we didn't get to see him until today. We were hoping he didn't leave . . . we've seen a few fellows come and go in our day.

Bailey's teachers are e-mailing her homework and she's working on writing a paper right now in her room for English class. The hospital loaned her a lap top so she can work in her room. I dragged all 75 pounds of her books from home, so she's ready to jump in and keep up with school. The teachers here at Riley are also in contact with her school and helping Bailey stay caught up.

Dr. D says we'll be here "a few days". We've learned enough around here enough to know that that means we have no idea when we're going home. Hopefully in 3 days, but who knows. He has also stopped the flecainide (which was just started Thursday) since he said it proved to be a "miserable failure" and is starting a new anti-arrythmia medication tonight, propafenone (I hope I didn't butcher that). We'll see how that works. But for now, the milranone is doing wonders for her physical comfort right now. We'll take one step at a time. (She's still in flutter. No word yet on cardioversion, but I guess that might happen tomorrow.)

Love you all, and thank you for your kind and thoughtful comments. You're an incredible support to us both.

Have a good night, all!
Angie

Going Back to the Hospital

We're going back to the hospital today. Dr. D asked that Bailey be re-admitted to start her on some new medication for which she has to be closely monitored. Bailey slept pretty good on our couch last night surrounded by soft fluffy pillows. Didn't get a full night's sleep because she's still very uncomfortable from all her extra fluid, but she did sleep a little so that's good.

Don't know how long we'll be in the hospital this time, but I'll continue to keep you posted.

Thank you for being such wonderful friends, family, and neighbors. Love you all very much!

Angie

We're Home . . . But

Cardioversion procedure itself went well, but Bailey went into flutter about an hour after. They let us come home, and now we just want and see.

Keep you posted!

Love you all!
Angie

Cardioversion #15

The plan is cardioversion this afternoon and hopefully get to go home this evening.

Keeping fingers crossed!

Angie

A Quiet Day

Today was a good day of rest and more of the Food Channel. Bailey LOVES the food channel, which is crazy since most of the time we're here she has orders not to eat or drink anything to prepare for either a cath or cardioversion. We did watch a movie to mix it up a bit though.

Bailey's poor little belly is just so full of fluid. She's gained 5 pounds since we were admitted on Thursday. Dr. D is hopeful that when her new medication gets to a therapeutic level (should happen tomorrow) and she's out of flutter (will hopefully also be tomorrow whether by cardioversion or medication), her heart will start working more efficiently and should start getting rid of the fluid. She is very uncomfortable - can't eat much, can't get comfortable at all so doesn't sleep much. But tonight she stood up and thought her belly might feel a little smaller . . . but wasn't sure if it was just wishful thinking. She gets out of breath easily, too, because of the additional weight. She walked down to the kitchen (only about the length of our house) and she became quite winded. I don't know what we'll be doing about school. She can't go back with this much fluid on her. One day at a time.

Haven't heard anything all day (not that we expected to) about her rhythm strips, so don't know if she's still got stretches of sinus rhythm so, therefore, don't know what the plan is tomorrow. We'll find out on morning rounds.

Things have been crazy on the Heart Center tonight - lots of medical staff members have been rushing in and out of one of the rooms. A sweet little girl about the age of Marissa is having a pretty difficult time right now. I got a big lump in my throat when I saw that she was about Marissa's age. I just immediately thanked God for all our blessings . . . and we do have many!

Hope you're all enjoying your extended weekend. Wish we could be home, but things could be worse. God is looking out for us.

Good night everybody!

Angie

A Little Bit of Good News

Well, we still don't get to go home just yet, but for pretty good reason . . . Dr. Schaumberger came in this morning and told Bailey that her heart is going in and out of flutter by itself. She's having pretty good stretches of sinus rhythm. Yeah! That's never happened before. We're hopeful that the new medication is kicking in and doing some good. So they don't want to cardiovert today "just out of boredom" (says Dr. Schaumberger - ha! - he's a great guy too). They want to keep her here another night so they can continue to watch her rhythm and see if the stretches of good rhythm keep going. They don't want to interfere with something that her body might be able to do on its own.

It feels good to have a bit of good news. It's been a pretty heavy weekend up to this point. But it's a beautiful Sunday morning - the sun shining through our window - and all is good today.

We'll keep you posted!

Enjoy your day -
Angie

Not Home Quite Yet

Oh, last night was a rough night. Bailey started running a fever just out of the blue - have no idea why. Then her oxygen saturation dropped to the low 90's (it's always at 100) and even dipped into the 80's a few times throughout the night. Alarms going off all night long. And she was having difficulty breathing for a while - couldn't take in as much air as she wanted to - but Trina checked her lungs and they sounded fine. That was really strange too. Wondered if it was a side-effect of the new medication, but it did seem to get better some time during the night. It made Bailey afraid to go to sleep - she thought she might stop breathing and no one would notice. Then at 2:00 in the morning, I hear our nurse Trina pop in and say, "Bailey, did your heart rate just jump up?" She said, "Nooooo, I don't think so." Trina walked out and immediately Bailey said, "Oh, yeah. I feel it now." She was out of rhythm. Oh, what a bummer. So she went out to the nurse's station and sat with Trina for a while since she couldn't sleep anyway, and I dozed off and got about a 4-hour stretch of sleep, but you know how the nights are when you're stressed. I kept imaging the awfulest things. At one point, I had myself convinced that her kidneys were failing. I was so happy to see morning come and my brain get back to working order.

The rounding cardiologist came in this morning and had talked with Dr. Darragh. They didn't want to cardiovert her today -- too soon after yesterday's cardioversion. And, if they held off until tomorrow, that would give her new medication that much more time to get into her system and hopefully help keep her in rhythm once she's cardioverted. So they decided to leave her in flutter a little longer and cardiovert in the morning. Hopefully all will go well in the morning and we'll be home at a half-way decent hour to enjoy some of the day at home.

Since she's out of rhythm again, she's been feeling pretty crappy all day. But she did get a good 3-hour nap this afternoon. Not eating much - nauseous. Trina did track down a wheelchair so I could take Bailey to the top of the parking garage to watch the fireworks tonight. That was fun! Bailey really enjoyed those. It felt good to get out in the cool night air for a little bit.

Hopefully tonight will be a better night.

Love to you all,
Angie