No rest for the medically challenged!

First of all - sorry it has taken me so long to update the blog. I can't tell you how much I appreciate the calls and e-mails I've gotten checking on us. I have sat down to update you numerous times this week, but each time I have to stop and go do something else. It's been an unusually busy week - and not Harlie's fault this time! More about that later.

As far as Harlie is doing - she is doing well, I think. She isn't very active (and I'm not pushing her to be, either). She spends most of the time on the couch watching movies. While sitting and relaxing, her respirations are 75-80 per minute and her sats are in the 60s (sometimes low 70s, but not often) on 1 to 2 liters of oxygen. We realized within a few days that it doesn't matter how much oxygen we give her, her sats stay the same.

Before we left the hospital, her cardiologist said we didn't know where she'll finally settle out. Another thing she said was that this was an "enormous" surgery on her body. So, I need to understand that it will take some time for her heart - and her body - to recover. Knowing that helps my patience with getting her off oxygen. It's a pain to drag around. Oh - speaking of oxygen, I took Harlie to speech therapy on Tuesday (I'm a mean mom, I didn't give her much time off) and when we walked in the building a little boy looked at the oxygen tank and asked "Why do you have a vacuum cleaner"? I said, "I wish it was a vacuum cleaner"!

She's still pretty sensitive about her chest. They removed her external pacemaker wires on Friday. They were sutured in there pretty good. She was not a happy camper. They put those little round bandaids on the spots and when I went to remove them Sunday night, she was MAD! And washing her chest is a little challenging. But, all in all, I think she's getting over some of the trauma of the last two weeks. When she sees me coming to her with water or food, she willingly lifts her shirt and opens her mickey button for me. That's definitely an improvement and it's nice to see her more cooperative side again. And on Saturday night (the day we came home), when I put her in bed I told her (and signed) I loved her and she signed "I love you" back. Ahhh... things are right (in our sense of the word) again.

On Monday night, Tom wanted to go for a walk. He was thinking that it was too hot outside for Harlie and that she just wouldn't be up for it anyway. So, he said aloud to Cooper, "Want to go for a walk with Daddy"? And Harlie jumped off the couch and grabbed her shoes and signed "let's go." Well, that answered that. So, we loaded up the strollers (Harlie's with the oxygen tank and suction machine) and headed out. She loved it. And she's so funny about accessories. She wears them all - hair bows, headbands, sunglasses and hats. Sometimes all at the same time! But, she is very sensitive to sunlight, so I suppose she recognizes the benefits.

Well, back to why this week was so busy...

Murphy attended a week's long sports sampler camp at the YMCA across the street. Today was the last day, and I think Murphy is very happy that he doesn't have to go back. He was in the camp with our neighbor (Phillip) across the street, who is the same age. I took the boys in the morning, and Phillip's mom picked them up in the afternoon. On Thursday morning, through conversation, Phillip told me that Murphy just laid around the previous day during camp. WHAT?!?!? So, I asked the counselor if that was true and he asked me "Did Phillip tell on him"? Then he told me that yes, it was true and that they can't make the kids participate, although they try very hard. I later asked Murphy what he didn't like about sports. He told me that it was too much work. Geez. Today they gave the kids a t-shirt that says "All day I dream about sports". Yeah, right. Not this kid. Well, next year we are going to get him involved in something. I don't know how we're going to manage it, but we'll have to figure it out.

He also went to vacation bible school every night (Sunday through Thursday) of this week. My friend Jennifer took him with her kids to her church's VBS. He really enjoyed it. Each day he couldn't wait to go. And then last night (Thursday) they had a show where they sang songs and danced. It was really cute. The songs were great and very catchy. During the week the leaders asked the kids who they wanted to pray for and they wrote their answers on a board. During the show, they read the prayers aloud. Murphy's was about Harlie. He said that he wanted God to help Harlie since she came home from the hospital from heart surgery. I'm usually really good about not crying about life. For the most part, I'm happy and feel very blessed that Harlie has overcome so much. So, I try not to be sad too much. It's just not healthy for me. But to hear her say it aloud and say that Harlie is Murphy's little sister, well it just made me so sad - for so many different reasons - that I couldn't help but cry. Sometimes I just have to forge ahead and not think about things. So, to have to think about it from Murphy's perspective was a little overwhelming. It must be so hard for him to see what's going on, but not fully understand it.

I've tried to have conversations with him about it - to let him know that he can talk to us about it if he wants. But we don't really get anywhere. For example, one night during the first week of Harlie's hospital stay (Tom was still in DC with me) Richmond had a thunderstorm. Tom's mom called us and let Murphy talk to us because he was scared and he was crying saying he missed us. Well, when I asked him this week if he was scared when Harlie was in the hospital he said, "Yes Mommy, I was scared because it was thundering and I missed you and Daddy". Hmmm, not what I meant, but okay. So then I asked him if he knew that Harlie had surgery on her heart and he said no. Ugh. We've talked to him about it before - numerous times. And I know that he knows more than he's letting on because he's talked to other grown ups about it. I'm just not good at talking about her stuff in terms that he can understand. I guess we'll have to get some education on that, or at least get him in front of someone who knows how. There are so many reasons why having a medically fragile child is hard. But I'll have to save that for another post...

Anyway, I've spent the better part of this week (and I'm not fiinished yet) making Harlie's next round of doctor's appointments and getting her therapies back on schedule. So many appointments for one little girl. Ugh.

What's on the horizon? Well, there are some surgical and cardiology follow up appointments. And I'm working on getting her MRI and CT scan scheduled for her upcoming spinal fusion surgery (this winter). And we have to make some decisions on her next jaw reconstruction (ugh). We've decided that we are going to get a second opinion by a surgeon at Children's in DC. We just think that with her heart complications and drug tolerances, she really needs to have surgery in DC. After what we learned and experienced with this last surgery, we are afraid that it might be too risky to go to a hospital that isn't equipped with a cardiac team. And unfortunately, Children's Hospital of the King's Daughters in Norfolk, doesn't have a cardiac department. So, we will see the plastic surgeon from DC in September to see how we feel about him. I just hope that we like what he has to say about her jaw. Because if not, then we will be in one heck of a hard place.

On Monday, we have Harlie's surgical follow-up appointment in DC. I am anxious to see what they think about how she's doing. And then the week after that we have another cardiology appointment with her cardiologist here in town. I love him and I can't wait to catch up with him and get his perspective on things.

Well, this post has been long enough and I really can't devote any more time to sitting here on the computer! I'm neglecting my kids and Brandy is working her fingers to the bone! Literally. She hurt her finger today. I told her to shake it off and to get back to work. No. I didn't really. I was sympathetic. And I let her have our last bandaid. She's fine now.

Thanks again for all your support. We are very grateful!
~Christy