Wednesday, January 5, 2011

Lucky 13

Well, today was lucky infusion 13, and I honestly don't know what's so lucky about 13 because let me tell you. Sami woke up this morning with her neck hurting and when her neck hurts I know it's going to be a fun day, lol. So we walked out the door this morning without brushing her hair and why make her suffer anymore. Well, before we headed up to ACH I had to put in a few hours at work and I guess if you're bringing your child to work they need to have their hair brushed even if they have arthritis in their neck because you should have heard all the comments that were made about her hair. It's just hair, who cares and if not brushing it makes her feel better and she doesn't care it's not brushed and is willing to go out in public with it looking the way it did today than just let it be. Yes, some of the comments really bothered me.

We left work at about 9:40 to head up to ACH and I figured I'd give myself plenty of time to get up there before her 11a.m. appointment. I think this was the best part of my day because I swear the traffic just parted to make way for me but on the way up Sami started complaining that her knees hurting. Great, she's already going a week early and has just had her Remicade upped so why is she hurting? I finished the drive just shaking my head since there isn't much more I can do than that.

We got to ACH and into the infusion room and that's when I found out just how bad Sami was hurting, she was actually rating her pain as a 7/8, my poor baby. Sami got her iv started and she turned pale instantly and after her first 15 mins she started running a fever, yay, just what we wanted. Then I got up to take some pictures and as walked around I looked at her IV bag and I noticed it said 100mg. So I asked her nurse why it was only 100mg because Dr. N raised the amount she gets to 200mg. She asked the other nurse that filled her order today and found out that her order was written for 100mg and they just figured that she was just flaring last time and Dr. N wanted her back down. So I asked what her old order said on it and she told me "Sami is to receive 200mg every 4 weeks" Ok, please explain to me how you would think that if he wrote that last month and then this month wrote it for 100mg wouldn't you question it, either the doctor or myself. So my favorite nurse in the infusion clinic said let me just call Dr. N and ask him. I love Dr. N. He came right over to find out what all was going on. And what it boiled down to is that he made a human mistake and I was fine with it but was kind of sad when he said she really needed those other 100mg cause we were already 2 1/2 hours into Sami's 3hr infusion. Dr. N really didn't like the amount of time that has passed since her last infusion and she's already having so much pain and we are in the middle of winter, so that's why he wanted the other 100mg done today. Her nurse asked if we could just come back but he said I know my Sami and her arthritis and I don't want her waiting. It really made me smile because I really feel that Dr. N really cares about Sami and now that he's got his own practice he seems so much more happier. And as he left her today he wished her good luck on her X-Rays next week.

So the pharmacy brought up the other bag of 100mg it got hung and luckily we didn't have to wait another 3hrs and her infusion lasted just and extra 1 1/2hrs. Reading an 1 1/2hr it doesn't seem that long but I forgot to add that Sami had a belly ache all infusion today, ugh, and all she did was moan today. I really thought today was an infusion that wasn't going to end. But it finally ended and we are home and it is only 6:30pm but we are all in our PJs already and I am one wore out Mommy.

Good night all and hope that your babies are feeling good cause I know 2011 has not been good to most of our babies already. Is it 2012 yet, lol, our babies need a break. Ok, seriously now, Good Night.

Much Love,


  1. Oh, thank God you caught it!!! I know that he doesn't believe in Solu-Medrol, but does he give her Tylenol & Benadryl before the infusion? They really do help to ward off the side effects. I hope that this one lasts longer for her :( Poor little thing! I hope that tomorrow is a much better day for her!

  2. She does get both Tylenol & Benadryl. But she feels even worse today. He thought she was about to flare and I do believe he was right. I woke her up to get ready for school and she moaned and didn't move to stretch so I knew she was hurting. I heated up her neck wrap and she is now sound asleep again

  3. Oh sweet Sami :'(I am so sorry that her pain is a 7/8. I would like to give your coworkers a piece of my mind >:{ WTG keeping the staff on their toes Mom!!!

  4. I just found your blog through my links. I'm so sorry to hear about little Sami. I KNOW her pain. It's horrific. I went through this but I want to tell you there is hope for her! I am in full remission by treating the actual underlying cause of my spondaloarthritis, which for me was long-standing, low-lying infections. One viral and one bacterial. It took about 6 months of treating the infections before my pain was all gone and my disease healed-by my Savior, Jesus. I was referred by a woman with Ankaloysing Spondalydtis who had been in remission for over 20 years by getting to the real root cause. I did not want to go down the rout of the highly dangerous immune-suppressing drugs so I put my faith in this alternative treatment instead. I never saw a Rheumatologist after this treatment. And I will never need to. God did indeed heal me. Let me know if you have any questions. I would love to tell you more about this option for Sami's sake. ;) Thanks and God Bless.