Thursday, November 12, 2009

This Little Piggy

Chloe got her H1N1 vaccine today. We were on the fence about this one, but her cardiologist strongly recommended it. Our pediatrician's office has had a hard time getting their doses in - their shipment this week was mistakenly delivered to another office, which promptly used them up! But we were able to get her in to another place today, because of her high-risk status. She is unable to have the live virus, which means she cannot have the mist. She was NOT happy about getting a shot. NOT. HAPPY.

After everything she went through with heart surgery without a complaint, she decided to put her foot down about one little shot! But when all was said and done, it was just a tiny poke, and mom got her a vanilla frosty from Wendy's, so the day was not ruined after all.

We are almost done with thank you notes. We have so many people to thank for delicious meals and thoughtful gifts for Chloe. We hope we remembered everyone, and we also want to say thank you here for all the prayers, emails, phone calls and kind words we received before, during and after Chloe's surgery. As she gears up for going back to school, and her steri-strips start to fall off her incision site, it is amazing to think what she has been through and that she gets to resume being a regular giggly 4th grade girl!

Monday, November 9, 2009

Cautious Progress

It is a beautiful November day here. It seems like most of fall passed us by as we prepared for Chloe's surgery, and now Thanksgiving is just over two weeks away!

Chloe had an appointment with her cardiologist this past Friday. She has been going to him since she was six weeks old. He first diagnosed her defects, after her pediatrician referred us to him. He is a wonderful, caring doctor, and we are fortunate to have Chloe under his care.

He examined her, did an EKG and echo. More often than not, he has a med student or resident shadowing him, and he always makes sure to give the students a listen to Chloe's heart, because her murmur sounds quite different from usual heart murmurs! Chloe is used to people asking if they can listen to her heart and is always very obliging.

A few things came up during this visit. Her pericardium, the fluid filled sac that surrounds the heart, has a little extra fluid in it, probably due to being irritated from surgery. It is not enough to warrant medication, but it is another reminder for her to take it easy. Also, her blood pressure and heart rate are good, but her heart is beating hard - you can see it beat through her chest. Her cardiologist thinks this points to her being anemic, because as anemia reduces the amount of oxygen blood can transport, the heart pumps harder to distribute enough oxygen throughout the body. These factors, added to the flu going around, caused him to say we need to be very conservative in sending her back to school. Her incision is healing nicely and she doesn't really have any pain, so it is hard not to look at her and think she should be back to school and back to normal. But we also don't want to wear her out and have her be even more susceptible to illness and infection when her heart and body are still healing from surgery.

As far as how her heart looked on the echo, her cardiologist said the repair is working for now and things look good. But he also said, to be blunt, this is a fix for now, and he can't guarantee anything for the future. We know that; that is not a surprise to us. We knew that six years ago after her first surgery, and we knew that even if the valve was repaired this time, it would not be the end of this particular road for Chloe. We are learning to appreciate each day and each piece of good news, because it doesn't help any to worry about what's next. Her case is a bit unusual, as her doctor said most children with this defect are repaired as infants and rarely need a second repair done on the valve. Her valve happens to be atypical in the way it is defective, so there are no hard and fast answers to how it will hold up over the years. But we are thankful for the great medical care she has received so far, and we are optimistic that with each year this crazy valve decides to keep working, more technology and advancements will occur in the field of cardiology and heart surgery. So by the time Chloe may need more work done on her heart, it could be a whole new ball game.

Today she is playing outside in the driveway with a neighbor, enjoying the unusually warm fall day. Yesterday she went to church and was excited to attend Sunday school. We have much to be thankful for and will take each day as it comes.

Chloe and little brother Garrett goofing around while waiting for the doctor!

Monday, November 2, 2009

A New Week

It is almost impossible to think that one week ago Chloe had just finished a full day of pre-op testing, and we were facing her heart surgery early the next morning. And now surgery is done, and we are all home together, and Chloe is feeling great. She hardly complains of pain; in fact, what seems to bother her most is itching around her incision and chest tube stitches! Those stitches can come out tomorrow, and we are in process of setting up an appointment with her cardiologist for a post-surgery visit. Her teacher brought over a little homework for her to start with, and she has been working on that this afternoon, after a lazy morning of TV and a little Wii time with her younger brother! She received more cards today from classmates, and it is such a blessing to read the kind words of her fellow fourth graders, who tell her to get well soon, we miss you, we're praying for you.

Just for fun, here's Chloe...
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