Saturday, March 22, 2008

Avoiding Gallstone Surgery

We met with a great G.I. doctor at Riley, Dr. Molleston. She was wonderful. She had already talked with Dr. D in-depth about Bailey's history and had already read her file (well, not all 15 years worth, but let's be reasonable) and knew basically what she was dealing with. From Bailey's description of her pain, it was pretty clear that the cause was the gallstone, but she went through all her medications and looked at everything possible to make sure they weren't missing anything else that could be causing the pain. The options for gallstones is basically to tolerate the pain while eating low-fat foods to minimize the pain, or to surgically remove the gallbladder - I guess they don't "pass" or can be lasered like kidney stones. Bailey's done so well these past 4 months since her last open-heart surgery - they don't want to mess with a good thing and just throw in a surgery if they don't have to. Besides, she's on a blood thinner and they would have to reverse that to be ready for surgery, which would increase the risk of blood clots - and that, of course, wouldn't be good at all. But, Dr. Molleston told us about a drug that came out about 3 years ago called Actigall. It's made from bear bile (thought that was interesting) and it's used to attempt to dissolve gallstones. It's not as successful as they had hoped, but it does work on some stones. So, it's definitely worth a shot if it can help us avoid surgery. They're trying it for 3 months and then Bailey will get an ultrasound to check things out again. She's experiencing relatively little pain and, hopefully, it won't get worse. It's possible that the stone could get wedged in a spot which could cause fever, jaundice, vomiting, etc., in which case they would have to remove it, but we're hoping it doesn't get that far. No one wants her to get sick. So we'll see how the next 3 months go.

Have a beautiful Easter weekend, everybody.

People are often
unreasonable and self-centered.
Forgive them anyway.

If you are kind,
people may accuse you of ulterior motives.
Be kind anyway.

If you are honest,
people may cheat you.
Be honest anyway.

If you find happiness,
people may be jealous.
Be happy anyway.

The good you do today
may be forgotten tomorrow.
Do good anyway.

Give the world the best you have,
and it may never be enough.
Give your best anyway.

For you see, in the end,
it is between you and God.
It never was between you and them anyway.

-Mother Teresa

Love you all,

Sunday, March 16, 2008

Can you believe? - gallstone

Bailey's been having a pain in her upper right side for the past 3 weeks. It only lasts about 15 to 30 minutes. It started out once every 2 or 3 days, but now is every day. Last Thursday, the school nurse called and said Bailey was in a lot of pain and it was a lot worse than she's had. So after talking with our cardiology team, they suggested we go to the E.R. at Riley. We got there at 12:45 in the afternoon and at 9:00pm - after a urine test, blood test, belly X-rays and CT Scan - they said she has a gallstone about 8mm in diameter (don't know if that's big or not - seems like it). She now has to add a low fat diet to her low sodium diet - which really shouldn't be too much different than what we're already doing because it seems that the foods higher in fat are also higher in sodium. We have to follow up with a G.I. doctor to see what our options are. Dr. Darragh isn't too hip (and neither are we!) on any surgery any time soon, so if we can at all avoid that, that would make us all happy. I haven't been able to write about this until today (Sunday evening) because the girls and I spent the weekend at a cabin out in the middle of nowhere in Brown County with 2 of my sisters, my aunt and one of my nieces. It was soooooo nice! We didn't get ANY of the rain that was supposed to be dumped on that area so the girls got to explore in the woods. I wanted to stay and live there forever - so peaceful. Mom couldn't make it because she stayed home to take care of dad - his scooter dumped him out onto the cold hard ground when he was coming down the ramp on his van - he hurt his knee pretty badly. Not broken, but bad enough that he's needing some extra help to get around the house.

Gotta go - I'm knee-deep in laundry!

Have a good week!

Monday, March 10, 2008

Bailey Sleds!

We tried to remember how long it's been since Bailey has been able to sled with her sisters (or anybody, for that matter) in the snow. We think it's been about 5 years - if not more than that. Playing outside in the winter is just something that's been stricken off of Bailey's list of things she's able to do . . . until Saturday! Prior to her Berlin Heart surgery in 2005, she had asthma symptoms that caused her to avoid cold temperatures outdoors. And last winter she was too sick to play outside, and this winter she's been too weak. I wish you could have seen her. I took the girls to Southeastway Park and Bailey wanted to go too. I had my doubts that she'd, for one, be able to walk through the snow (that takes extra energy in itself), and, two, that she'd be able to walk up the hill to be able to sled down, and, three, that she'd be able to stay out in the cold for very long at all. I was wrong on ALL counts! I walked up the hill with "them" (I say "them" because I was really there to make sure Bailey would be ok) and watched as Bailey looked down the hill on the other side, which was an even steeper hill than the one we walked up. She said, with this big smile on her face, "I wanna do THAT one!" I was a little nervous. I wondered to myself how I would get her back up the hill and then down the other side of it and back to the van, if she was unable to make it back up, or ran out of energy at some point. I kept telling her to "take it easy, take your time". She flew down the hill and walked back up. Flew down again, and walked back up again. And flew down AGAIN, and walked back up. Finally, after 20 minutes of watching her and telling her to take her time, I said, "Bailey, I'm cold. Wanna go back to the van with me?" And, to my surprise, she said, "No. I'm having fun!" Well, I HAD to go back, because I wasn't dressed at all for sledding -- I had tennis shoes on, a pair of jeans, and a wind breaker with a sweatshirt. I had no intention at all of getting out of the van, because I guess deep down I didn't really think Bailey would have the nerve or the energy to go sledding. So, I walked back to the van all the while worried that I was leaving her there. I kept thinking that Josie would run and get me if anyone (namely, Bailey) needed help, but then was thinking that if I stayed out there I would be available immediately. But it was COLD!! So, I sat in the warmth of the van for about 30 more minutes wondering if I need to go back to the hill, when I see all my girls' coats come sledding down this side of the hill. I kept looking for Bailey's black and white coat and, finally, saw it - she was the last one down. She stands right up and starts walking toward me. She doesn't even pause to lean over and rest her hands on her knees or anything! They all walk toward me - like the Mod Squad - all three of them with big smiles on their faces and I was overwhelmed with the need to shed some tears. I bet not very many people come away from a sledding event in tears and not because of an injury! I was so excited! I can't express to you how amazing and wonderful it is to see Bailey playing in the snow with her sisters. For so many years, Tom would take Josie and Marissa sledding and I'd stay behind with Bailey - either at home or in the hospital. My heart was completely filled with joy. I know what it's like to be overflowing with joy.

And she didn't even quit on Sunday. Before all the snow melted, the girls, including Bailey, went out in our backyard and the neighbor's backyard to sled some more! And today she's complaining of sore muscles. I bet! Haha!! Such a pleasant problem to have!

Hope you all enjoyed your weekend!