Monday, February 7, 2011

A Bit Stressed Out

It's the eve of Sami's Remicade/MRI day. It's been a busy past few days making sure that everything is going to run smoothly tomorrow. I spent just about all day on the phone on Friday, I had a few problem's with Daniel's medication I had to get straightened out and then the rest of it was spent on Sami. It was after talking to the nurse in Radiology that everything sunk in about Sami. Between her Juvenile Arthritis and her discoid meniscus and her trying to be a "normal" 6yr old there is so much to actually take in. But it was what the nurse said to me, that made it all really sink in, he made a comment about having to run extra labs before they could put her under because of her being on Remicade and a chemo senescent (metho). I almost wanted to start crying after he said those words to me, I've always known the medications she's been on and I've done all the research on them but hearing that was so scary. 

But today, was my favorite. Sami has gone to ACH for all of her infusions and I made her MRI appointment in person and talked to three different people on Friday about her MRI and I talked to the infusion center this afternoon to also make sure everything was ok and I didn't have to do anything different for them. I thought everything was all set and then I get a call from someone in Scheduling and she said you wanted a phone call if we could move your child up and we can so we've moved her to 11am, umm, seriously. I didn't ask for her to be moved if there was a cancellation, she'll be getting her infusion at that time and unless she can get both at one time please keep her at the time I set. So I got her moved back to her scheduled appt time and was about to start breathing easy and my nervous set in. I've got to not let my baby eat tomorrow and I know she's going to be so hungry, she also has to get her Remicade which she usually has reactions too and then also she has to be sedated for her MRI in which I already know that she has problems waking up from anesthesia, so I've become rather nervous. I know my baby will be ok and tomorrow is just a few more steps in getting her better.

I hope you all have a wonderful night and your children are doing great.

Wednesday, February 2, 2011

A Mommy with new hope

I know in my very first blog I said I would update everyone about Sami's knee after we saw her Ortho. Well, that visit came and went and I didn't update my blog. I really like her Ortho and he did new X-Rays and we talked about how her JA is doing along with her Discoid Meniscus. After all was said and done he agreed with Dr. N that she needs surgery to fix her Discoid Meniscus since it is fixable and her arthritis can't just be fixed by surgery, but then he dropped the bombshell on us that he didn't want to touch her. Seriously, aren't you a Pediatric Ortho? So why don't you want to help fix my baby? Granted you are the same doctor that told us it was "Just Arthritis." So anyway, he referred us to another doctor in the his practice. And today was her appointment with Dr. Warnick. Yes, I gave the actual name of the doctor because I was just so pleased with him.

When the kids and I walked out my son said "Mommy, you're smiling and I haven't seen a smile like that in a long time." And yes my babies, Mommy is beaming!!!!! It maybe a cloudy day with a cold front trying to come in but I am smiling :-)

So anyway, Dr. W went into great detail of Sami's knee and drew me pictures compared to that of a "normal" child. We talked about how even when Sami's knee isn't flaring how she's still always in pain, we talked about Sami's knee when she is flaring. And it was when he drew me pictures of how Sami's knee is from the Discoid Meniscus and how it should look is when I really understood why Sami is always in pain. My knee would hurt all the time too if my knee was like that. The MRI Dr. W had to look at is about a year and half old so he has ordered a new MRI so he can see the change in her knee now from the last one because her knee was so inflamed the last time. Dr. W even went on to tell me that if her new MRI still shows the issues with her arthritis that her old MRI shows he says he can even fix some of it. She won't be arthritis free but he could maybe help it. Woot Woot!!!!

Sami has her Remicade on Tuesday and because Sami needs to go to sleep for her MRI I was lucky enough to get this MRI scheduled for the same day as Remicade day so we will go back to ACH next Tuesday for her Remicade, they won't remove her IV and we'll walk over to Radiology for her MRI. I am so happy Sami won't have to get two IVs and this worked out so well.

Pain free hugs to all of you and your babies!!!