Norfolk

So, we had our monthly trip to Norfolk today to see Harlie's Infectious Disease doc.  She's now been on antibiotics for three months.  The normal treatment for a bone infection is between three to six months.  I don't know if there's a connection (the doc said he doubted it) but she's been well the entire time, without so much as a cold.  In light of her upcoming heart cath and surgery, I was thinking it wouldn't be a bad idea to go on ahead and keep her on the Levaquin until her heart surgery.  Her doc agreed.

At first I thought he was going to let us skip the blood work today.  But then he decided he wanted to see her levels.  Her hemoglobin is on the high side, but it has been since February, and he's thinking that's just her normal considering her heart condition.  I'm not going to worry about it.  We'll be in good hands cardiac-wise in just a few weeks, anyway.

Getting blood this time was WAY more difficult than the last time.  Both of the lab techs had to come to work on her, so she held up the line for a while.  The worst is when they stick the needle in and then move it all around.  I think they call that "fishing" for a vein.  It's gross and I know it hurts.  So, she's sporting some good, ugly bruises on both arms.  We have to remove the band aids as soon as possible because she acts like her arm is broken as long as the band aids are there.

She's a funny girl.  Most kids her age show off their boo-boos like trophies.  And want band aids.  She never, ever points her boo-boos out.  It's as if she can't even see them.  Or maybe she's always seen them, so they're just a part of her.  I don't know.  I just think it's weird.

Anyway, after they finally got what they needed, she was soaking wet from crying, drooling and sweating.  And Brandy wasn't much better, considering she was the one who was holding her.  I've decided I will take the help in that area whenever it is available.  There are going to be (and have been) plenty of times when I'm the only one there and can't rescue her/comfort her when it's over.  I much prefer that role!

So, we go back in another month.  Lots of road trips ahead.  Fun, fun!

infectious Disease Appointment

We had another appointment with her Infectious Disease doc in Norfolk on Tuesday. I think it has been 3 weeks since our last visit. She has been on an oral version of Levaquin since then, and has been doing well. No diaper rash (thank God!) and no increased vomiting, hives, etc. So, that's wonderful. I have been very happy with how well this antibiotic is going so far.

She started receiving antibiotics on February 11th. It has now been over two months of treatment. The doc said that the normal treatment time for this kind of bone infection (because they are so much harder to fight) is between three to six months. So, we are not even halfway yet. But, as long as the Levaquin works okay, I'm happy.

Since she no longer has the PICC line, they had to draw blood. The only negative was that we had to go to the lab. It was very crowded, and not comfortable at all. There were two small rooms for drawing blood, which were in the middle of the waiting room. So, you could hear everything - including crying and screaming while they were poking kid after kid. There are definitely moments that I find it helpful that Harlie can't hear very well. But Cooper and Harlie played anyway, ignoring the screaming, and were very good.

When it was Harlie's turn, she was a champ. One stick, and just 45 seconds later, we were walking out the door. I'm so proud of my little girl sometimes I just don't know what to do.

We go back in about 5 weeks, I think.

More later!
~Christy

Norfolk Trip

Our trip to Norfolk today went great. The traffic was good on the way there, and on the way back. We arrived early for our appointment (a NEVER for me). Harlie was fine until we got into the room where she is weighed and vitals are taken. Then she just started to cry. One of those sad cries. Ugh.

Once we got into the exam room, Harlie sat on my lap and put her head on my shoulder. I decided to talk to her as if she could understand everything I was saying. So, I told her that I knew that she was scared and that it was going to hurt for a little bit, but after it was over we were going to the mall to play and she was going to have fun. I have no idea if she understood any of it, but I figured it couldn't hurt to try.

There was nothing really to say to the doc, as she seems to be doing well (so far) on this new med, Levaquin. Her back still has the marks of her hives from last week. It's almost like the hives turned to freckles. I'm sure they will fade in time.

The vascular access team (VAT) came to change her dressing. All four of them. It is a very small room, and there were six adults, two kids, two strollers, two chairs and the exam table in there. It was very crowded. Since they clearly didn't need me, or Cooper (and all people in the room have to be masked) I took him and a stroller and left the room. Brandy came out with Harlie just 15 minutes later. It was the quickest dressing change so far.

We practically ran out of the hospital and to the mall. Here's the play area...



Here's a happy (and overly tired) Cooper (sporting his new buzz cut).



The last time we were here, Cooper was bound and determined to be able to step off this .. whatever you call it. He would step off (like a big kid) and fall down. And he would get back up and try again. And he did that at least 30 times! But he mastered it. He walked off it this week on his first try.



Here's a much happier Harlie. She ran all over the place.



Here's Cooper and my friend Melissa's daughter, Isabella.



I thought for sure Cooper would sleep on the way home. He was up ALL night last night crying. I have no idea what his problem was. He slept a little on the way down there, but only less than an hour. He was a bear to put in bed, but hopefully he'll sleep soundly through tonight.



And speaking of sleeping... here's a pooped Harlie on the way home.



Hopefully the rest of our appointments will go this smoothly.

Thanks!
~Christy