Sunday, August 24, 2008

August Remicade

Remicade is the medicine that Charlotte goes to the hospital to get to help control her the arthritis in her eyes (uveitis). Its given intravenously over a 4 hour block of time. We hang out in the Children's Day Treatment Center of the hospital with other children (& their families) who are getting their IV's (99% have cancer). This medicine is given every 4 weeks, once a month. So August '08 is done! We only have 20 left (per the recco of Dr. Stephen Foster to be on it for 2 years) before we head back to Boston to talk to Dr. Foster & talk weening to see how Charlotte's body holds on her own.

But that's REALLY putting the cart before the horse to talk about that! That's putting on our socks over our shoes isn't it?! Lets take one step at a time & get thru each month, because right now, that's about all I can think about.

August '08 was a hard infusion. It was about as bad as her first one way back in April. She was so upset to the point that she was sweaty, working her self up, and they couldn't get the bandage to stick over the IV, and it blew.
Charlotte's arm has war wounds for our August '08 Remicade day. It looks awful. And she's almost 3 (next month) so she will tell you that it happened at the hospital, and it hurt....
A few things I learned from this trip. Always make each hospital trip the same routine, sameness as much as possible helps with alleviating the acknowledgement of pain. We had several things go on this morning so that it wasn't the SAME, including me not being there in the AM, Daddy holding her (till i got there), another new nurse (I had a talk with them about this...) injecting the IV, etc.
By the end of the initial poke, two of us were in tears, 3 of us were blotchy & red and all 5 of us in the room were exhausted & glad it was over.
I don't believe the numbing cream is working so I might start taking that into my own hands as well (I have some spray...). We even talked about a port with Dr. Kingsbury but.... i only go down that road immediately after the initial poke & then for an hour till I have calmed down. i don't think it would be the way to go, but its still hard to watch the IV poke when we have to hold her down like a psych patient.
We also talked to him about the trauma the weekly shot is giving Charlotte (that we do at home. when we are at the hospital, they put it through her IV, so we get a week off). He suggested we change to giving it to her orally. I said, "But you said..." and he didn't even let me finish & said, "I know, I know but..." and we talked about the weight of the trauma versus the "best" way to give MTX. I am going to run this by Foster as well & then if all agree, do it AFTER the next eye exam so we don't have too many variables going on.

She's going on week two of NO steroid drops. We see the ophthalmologist in 1 week to see if the Remicade & MTX are holding the eyes on their own without the steroid drops.

Can you imagine my strength level the next day when "mean pool mom" dropped some insulting remarks to me about Charlotte not wanting to be in swim lessons (because of ANOTHER new teacher? Remember how I said she needs "sameness" - "consistency?")? I didn't care if Charlotte didn't want to participate in swim lessons. I know its not the water that Charlotte has issues with. Its being with people she doesn't know & isn't comfortable with. But "mean pool mom" had to really throw some doozies out there, with her back to me no less. I was looking for her "Michael Phelps" in the pool but didn't find him... So there MEAN POOL MOM! Back off! You have NO idea what my little girl goes through, NO IDEA. I don't think its too much to ask to have the same teeny bopper each day for lessons so that she feels comfortable with them, but I do NOT need to tell you that or prove anything to you. Just the judgements people say out loud or even in their head ... when you have NO idea!

Charlotte feels great & is happy so that helps the Momma's strength to increase & hope in humanity to rise. We dont have to worry about September Remicade day for another 3 weeks & 6 days! But I do need to plan Charlotte's birthday celebration for September! THREE here we come!!


Jacob's Mom said...

That picture is so cute Erika!
Just so you know, Jacob is on the oral MTX and I ask Foster everytime if it is okay he says it is fine. So I hope you will be able to switch and avoid the trauma of the shots. The Remicaide is enough to deal with.

Hope all is well with you! Go get that mean pool mom!

Lisa Milton said...

Like I said before: Some people just don't think. Some are small-minded and unkind. Most are too wrapped up in themselves to think what their words might do to someone who really could use some grace.

It doesn't make it right, just ignorant.

I would have loved to be there to take up the side of the chronically ill. As the non-parent, I could. From my own experience, I would.

It shuts people up in a hurry.

Ok, enough crazy talk. May the next 3 weeks and 6 days be blissful.

Team Houston said...

I am so sorry that you received a comment like that!

My little Simone also needs routine and SAMENESS. Every child is different and until you walk down that road or put your self in someone elses shoes you never know what people have gone through.

Good for you taking care of your daughter and knowing her best. That's why you are such a great MOM.

Your post also brought tears to my eyes....Every thing that you are all going through, especially your baby.

Hang in there!!