Thursday, March 5, 2009

They tried to make me go to REMICADE & I said, No, NO, NO!

You always hope that over time, it gets easier. Practice makes perfect & yadda, yadda, yadda....

Charlotte (@ 3 1/2 this month) decided she was done with her Remicade treatments today (next month will mark a year that she's been going in every 4 weeks for Remicade chemo treatments for her arthritis in her eyes - uveitis).
She & I made the trek together, but not before Emma & Ellie helped pick out her clothes & pack some toys & give her their stuffed animals to take (that was super nice & did help a bit! Ryan stayed home with Emma who is almost 100% from having a virus).

It started in the valet parking lot when she refused to get out of the car. There I am with the big huge bag o'stuff, my purse, her pillow, "C'mon Charlotte, let's go."

Screaming, "NO!!!!!!! I AM NOT GOING IN!!!!!!!!!!"

Poor valet boy :)

Worse for the nurses who heard Charlotte at the end of the hall, refusing to go through the doors of the Children's Day Treatment Center.

Screaming, "NO!!!!!!! I AM NOT GOING IN!!!!!!!!!!!!"

Just walking through the doors she started to freak out & scream & cry with convulsions. I had to drop all the bags, pick her up, sit in a chair and rock her & try to calm her down. I had her breathe deep breaths, shhhh'd her, "its ok...", and just stopped it all for a few minutes. And she was ok for a few minutes, getting out her movies, seeing the new polly pocket (cinderella) that I brought for her... and then it was time for the IV.

Imagine the screaming again....Her blood pressure was through the roof. She popped the needle out of her vein of the right arm so they had to try the same vein but higher up & that didn't work, so then it was on to the left arm, where they got it in & proceeded to take blood for lab work. The entire time I continue to hold Charlotte like a psych patient, sitting on my lap with her legs in between mine, bear hugging her with one arm & holding her head with the other trying to keep her from looking (gets her worked up more).

WORN OUT - ya so was Charlotte (Just Kidding)!

No kinks in the line, so it went swimmingly smooth once it was in, stint on & wrapped with tape & after ALLLLL that.... she calmed down, hung out with her friends Miss Cindy & Miss Dawn & entertained them with her 3 1/2 year old stories of her stinky bottom & how she peed the bed last night, "but I just went on the other end & slept." Ok that part - not true :) Stinky bottom?! Who knows :) Between the videos of Schoolhouse Rock, Chicka Chicka Boom Boom & Bella Ballerina, we wrapped up 4.5 hours later.

So this whole idea of "getting easier...." Hmmmm.... I was optimistic! And I guess it cant get much worse than screaming at the nurses at the top of your lungs in front of all the other patients (I have never heard other children like I have heard Charlotte, are they all much better troopers?!?!? What must they think???). I do have better humor about it all, but it is tough. I did almost cry today during the IV because its very hard to see her THAT upset & angry about the whole situation. And I have cried during the initial injection, but... I also know that it will be over soon, so we gotta buck up campers & get'er done. The nurses know that if I were a rich benefactor, I would put a fan in the injection room to keep us all cool as we are sweating trying to keep Charlotte down & injecting her. So... cheers to it being easier, or at least not this bad for awhile....
PS - Eyes remain quiet (appt yesterday - all good).
PSS - I know we go through this once a month for good reason & I am thankful the meds are doing their job.
PSSS - I am very thankful the meds are doing their job!!

3 comments:

Team Houston said...

BIG HUGS to you two!

I have tears in my eyes for the day you had.

Hang in there. I know how hard it is to watch your baby be so up set!!

Glad to know that it is working.

xoxo Michele

Lisa Wheeler Milton said...

So glad to know that at the end of the day, the meds are doing what they need to do.

Because to go through that without the results would be so heartbreaking.

I'm so sorry she has to go through this again and again.

Remind me to tell you about another med I heard about recently...maybe it will be good news down the line...

Fantastic Forrest said...

Mama Milton shared your link and so I came over to give you my sympathy as well. It is so hard when your child is ill or needs medical treatment. You and your family are in my thoughts.

I hope things go easier for you all.

Take care,
Holly Forrest