Friday, September 25, 2009

Update on Princess Madeline

I am terrible. I've dropped the ball and not updated Madeline's blog. So many of you have sent notes worrying about her. Thanks for caring.

She is better. It took 10 days (9 days straight w/ fever) to get over the flu. Her rash is healing. The pits have healed nicely, just hope there are no scars. I do not believe the rash is JDM related, but due to the illness. Now, don't get me wrong. If my healthy son had the same illness, I do not believe he would had reacted like she did with the longevity or rash. But who knows. I'm just glad she is back at school...which she missed way too much of...back at dance....which she missed over two weeks worth...and back to being a happy, well little 10 year old.

This illness scared Rick and I. I've never had either of my children sick for this long. Even my son who had meningitis got over the illness faster than this.

But all is now good in Madeline's world today. She's well, dancing and playing w/ friends. And, she got her first report card for the school year and almost made straight A's. She missed it by one point! But we are still SO proud of her. What an amazing little princess.

Wednesday, September 16, 2009

Day 6 and we still have fever!

I am almost in panic mode. Madeline has now had fever for 6 straight days. I've decided that if she still has fever tomorrow (after also taking a z-pack) I'm calling our local pediatric infectious disease physician for an appointment. Our pediatrician is nice, but not as aggressive as I'd prefer. Plus, the doctors' offices are packed with kids with flu, mono, strep and that's that last place I want to bring her right now.

I'm trying to not worry, but I can not help it. She has never had a constant fever, that's very high at times, for this long. Neither of my kids have ever done this. She has now missed a week of school and I can't even imagine how she will get caught up. But then again, who cares. I just want her well.

She seems more congested today. Her nose, head is very stuffy. When she does not have fever, she's in good spirits. She freezes constantly though - with or without fever. And her arm and chest rash still looks bad.

I guess I am rambling...but I'm concerned.

Monday, September 14, 2009

Look at her arm!




Madeline is still very sick. She has a high fever and can't seem to get over this quick enough for Momma. One concern I have is the rash our doctor says is poison ivy. I'm not convinced. Here is a picture. It looks terrible.




Saturday, September 12, 2009

The nose swab - yuck!


Here is a pic of Madeline having her nose swabbed to identify the flu strain. She said, "it tickled very much but did not hurt at all." She is a little better today. Her fever is not as high. We've been inside all day and it's getting a little old.

Friday, September 11, 2009

The Flu is HERE!!!

We tried to protect Madeline as much as we could, but it didn't work - she has the flu. We went to the doctor today and they swabbed her. We still have to wait on the confirmation of the swine flu, which to me really doesn't matter because by the time we get the results hopefully she will be well. My understanding is they send the swab to Atlanta and it takes 3 -5 days for results.

She is experiencing the normal flu symptoms...sleeping a lot, fever, shakes, burning up, high fever, aches and headaches.

We had a weekend getaway planned to Baton Rouge. It's the first home game for LSU and we go to every game. Plus, we planned to do some girl shopping while there. The Tigers will have to win without us. But, we will be cheering for them from home.

GEAUX Tigers!!!

Thursday, September 10, 2009

Not feeling well

Madeline came home from school today not feeling well. She called me at work crying and weepy. She didn't go to dance tonight. She is not running fever, but her throat looks terrible. She is very tired and just not herself. We'll have to just wait and see.how the night goes.

I did notice a rash on her arm. My first reaction was a little panic, but the more and more I look at it I believe it's poison ivy...I think. She went camping with a friend last weekend. So, maybe that's what she has. She has never been allergic to it, so if it is poison ivy this is a new allergy for her. I will keep a close eye on it.

We are on day 10 of her decrease of meds. This couldn't be the JDM - could it?

Tuesday, September 8, 2009

Blood work results

Great news on blood work...see for yourself!

SGOT (AST) - 22 (0-31, normal)
SGPT (ALT) - 10 (0-31, normal)
CPK - 125 (24-170, normal)
LDH - 211 (120-300, normal)
Aldolase - 4.6 (3.3-9.7, normal)

Tuesday, September 1, 2009

First day of decrease of cyclosporine

Today was our first day of the "decrease". We decreased her cyclosporine, by doc orders, to 1 cc per day. When I made her medication, which she drinks w/ OJ, I didn't think about not putting as much OJ in the glass. She made an awful face. I asked her, "what is it"? She said, "I can taste how sour the orange juice is...it's terrible".

I've had a very busy week at the hospital and not had the chance to pick up her bloodwork results. Still have the fear of the flu in our community. Our local schools and hospitals have been hit hard. Today, while walking through our emergency department, there was a line out the door for people waiting to be triaged...all obvious flu-like symptom patients.

New Years Eve 2007

New Years Eve 2007
Her rash on New Year Eve 2007. We were treating at this time as poison ivy.

Madeline, January 2008

Madeline, January 2008
Here is a picture of Madeline (2008) at her classroom birthday party. Here you will notice her malar rash and grottron's papules on her hands. Of course at this time we had no idea what was going on.

Madeline, January 2009

Madeline, January 2009
Here is a picture of Madeline at her 9th birthday party. The only redness you see now is the nornal redness from running around at your birthday party. My, what a difference a year makes.