Wednesday, January 18, 2017

Infusion Day

Those of you who know me well, know that I am not a calm person.  I am a hypochondriac. I have very high anxiety.  I am a walking basket case.  And then you add on top of that anything to do with my kids and I am a wreck!!  Good things, bad things, scary things...all of it.  So you can only imagine how well I am handling all of this!  Surprisingly, today I was relatively calm.  Even surprised myself. I started to think that maybe I am finally pulling myself together...and then tonight happened.

Checking out the play area in the waiting room.

She LOVED this wall and could have played with the different levers all day.

Today was P's first Remicade infusion.  I didn't know what to expect but everything I had read online talked about how much patients started to feel better so quickly after beginning treatment.    We arrived at Floor 7 of Mott's Children's Hospital.  Hematology/Oncology. Every kid in there is battling something fierce!  Some are quite obvious.  Others are invisible.  Like Crohn's.  I am finding that people don't know about Crohn's or don't understand it.  The child doesn't necessarily "look sick" but yet their gut is going crazy inside of them!  (I will get on my soapbox later about this disease and what I have learned.)

We met right away with Mallory.  She has been the nurse in the Gastroenterology department that has communicated the most with me leading up to today.  I feel like I have talked to her almost every day in the past week as we arranged certain parts of P's treatment or through email as she answered some of my more irrational questions that I would send to the office in the middle of the night as I laid awake.  I wanted to hug her when I saw her.  She has been so kind and reassuring.  She went over some of basic information with us and answered some of our questions.  She also gave us a binder full of information.  A binder!?!!?  You KNOW I love a good binder!!  (Of course I had created one of my own already but I was still excited.)  It is such a great resource to have as we try to navigate all of this.

We were sent into another room for P to get her IV.  Have you met our little drama queen??  You would think that she was being murdered the way that she carried on and on and on....and there wasn't even a needle insight yet!  Just the anticipation was enough to send her through the roof.  I am pretty sure that all of Ann Arbor heard our little sweet P not acting so sweet.  Our nurse was fantastic with her!  Very patient.  She kept telling me that they have had worse.  (I am not sure if they just say that to make me feel better or if that is really true!)  After we got the IV in and Penny and I were both soaked in sweat, they were able to take a lot of blood for more labs to be done before beginning treatment.

Penny was set up in her only little cubicle of sorts.  It had a recliner for her, a rocking chair and two other seats.  We were on the end and it was the perfect spot for her to be in.  Not to mention that it was right next to the fridge full of juice boxes, bagels, popsicles and ice cream.  P was pretty happy about that!  We scheduled the rest of her treatments for the rest of the year and they told me that they would make note of putting her in the same spot each time.  She was then hooked up to the Remicade...and there we sat...and sat...and sat. We were there for almost 5 hours.  Seems like a long time but it actually flew by!

During this time, Dr. Cardenas came to speak with us about all of our concerns and talk about her treatment plan.  It doesn't sound like we will have infusions as often as we first thought so that is a good thing.  There is so much that is unknown about this disease and every patient is different so we will just take it day by day but we feel that we are in very capable hands and in the best place that we can be.

Getting use out of her new colored pencils.  We put together a little bag of tricks to entertain us.

Snuggled up watching Tangled.

Dr. Cardenas met with us for quite a while and also checked P out while we were there.  It was fantastic that they were able to combine the treatment and our first meeting with her at the same time. 


After the IV was put in, P tolerated the treatment just fine. She did spike a fever, which I was told was very normal and that it would subside probably before we even left...which it did.  We were told that everyone reacts differently but most either sleep all evening and just want to be snuggled up OR they have an energy burst and are hyper.

Momma and Dadoh bought her a little present for doing such a great job at her first infusion!  She loved her little gnome that she named Lovey.  Love seeing that smile on her face!!

On the way home, P asked for McDonalds.  Whatever that little peanut will eat right now, she gets!  Before we could even get off the exit and get it for her, she was passed out.  It's exhausting being so brave!

We went straight to her sitter's house to pick up Gus and attend the Norwex party our sitter had tonight.  When we got there, P was super crabby and rude.  I tried to let it go because she had been through a lot today.  But shortly after, she started playing with her friend, K, who was also there with her mom and before you know it, P was SKIPPING through the house!  SKIPPING!!  And running around!  We heard giggles and screeches!  Clearly she is responding with the hyperactivity!  :) This behavior is something we haven't seen since June.  I had to leave the room to pull myself together.  Remember how I talked about the crying with good things and bad things.  This was a good cry.  So excited.  So encouraged.

video



The video above is what is currently going on in our household at almost 10 PM.  Love this goofy girl!!  If tonight is any indication of this medication doing its job, then I am very excited! I know it is too soon to see results, but I am so hopeful!!


2 comments:

  1. This is the medication that one of my boys will move onto next with the UC if needed. It has been discussed for him for some time now. I hope it works wonders for your little princess.
    Andrea

    ReplyDelete
    Replies
    1. It has been amazing for her! Less than 48 hours and we saw a huge improvement with her energy levels and her appetite!

      Delete

Related Posts Plugin for WordPress, Blogger...