Wednesday, November 3, 2010

First IV infusion

So today was Jackson's first iv infusion of the remicade. The drug that scares the crap out of me because of the risks involved! So we got the the Children's Hospital at 11 this morning and were instructed to register at the hospital then walk over to Dr. Vehe's office to have a appt. with him and then go and get admitted to the hospital for the infusion. When we got to Dr. Vehe's office a little after 11 the receptionist says '' Did you know the appt was at 10:40?'' I was told 11:20 she didn't believe me but Betty the nurse cordinator came out and said it was fine. Later I listened to my voicemail that I had saved and it did say 11:20. Really no big deal but the receptionist was rude about it so I was a little angry. I think my anxiety about what was going to happen today maybe got the best of me! So after we met with Dr. Vehe we went and got settled into our room. Talk about depressing, almost every room on the floor was full and it is just sooo sad to see all of those sick kids and a couple of little babies:(. Jackson's iv was started at 2pm finally. They gave him some benedryl and tylneol before hand. Since we had left Eau Claire at 9:30 this morning we hadn't had lunch yet so I called down to the cafeteria to order some food. Well they claimed they didn't have his name in the system and I was starting to get mad since it was past lunch time by this time. I said well I just want some food brought up here and they said they would call the nurses station to see! Well they never did and after asking 2 different people about it the nurse finally called down there. And then it took another 30 minutes for them to bring it up! So annoying! After he ate he was pretty tired so he slept the rest of the time. Pretty boring day, I watched t.v., paced the room a few times, stared out the window, and probably checked facebook every 10 minutes! next time I will bring something to read or something. They took blood while we were there to, to see how his kidneys and liver are doing. We were discharged at 6pm. We missed the worst of rush hour, thank god! There was still a lot of traffic but it was moving smoothly. The day went well and quiet. 2 weeks from today he schduled to see Dr. Bothun to check the eyes and be admitted for the 2nd infusion. They doubled booked us so one of the two will have to change days since today was a total of 7 hours we were there.

Halloween was fun, Jackson loved it! We went trick or treating with my cousin, her husband and her daughter. Afterwards we went to my aunt and uncles house and had chili with my whole family.

The week before halloween Jackson and I both got sick with different things. Jackson had the flu and I had a cold that turned into bronchitis. Being sick and taking care of a sick kid is the worst, not fun! Jackson was all better by the friday before halloween, I on the other hand have been battling to feel better. As soon as we got back into Eau Claire tonight at 7:30 I went back in to see a doctor and they finally gave me some meds to feel better. I got antibiotics and a inhaler, so hopefully I will start to feel better within a couple days!

Thanks for checking in and hopefully we will start to see improvement soon with the infusions!



  1. Thanks for the update, Sara! I'm glad things went well other than the confusion with your appointment time & the lunch issue. It sounds like you have a very brave boy, I bet you were proud of him. You be sure to get some rest & stick with your meds (like you don't know this!) So you can be feeling better for your next trip in 2 weeks. I know it's hard to be a prisoner in a hospital room with your child, it's stressful & can make you crazy. I bet it's good to have the first experience under your belt so you'll hopefully be more at ease next time. Jackson is always in my prayers, I hope the next appointment shows great improvement with the cells. Hopefully this medication does its job & nothing else! No side effects! Hugs to little Jackson.

  2. HOW FRUSTRATING! So sorry that your day had to be so filled with stress and ridiculous annoyances. A day that was going to be hard enough as it was.
    And I know all about checking Facebook every 10 minutes! LOL! I'm a junky like that too! On my blog I have a FB badge. Click it and friend me :)