Skip to main content

Preparing for Infusion Day




Part of my daughter's treatment for her autoimmune disease includes infusions at the hospital. She receives monthly infusions of a blood product called IVIG, and every few months she does an infusion of an immune suppression medication called Rituxan.

Infusion day can be long and boring, but we are thankful for treatments that seem to be helping.  We've been doing this process for over a year now, so we seem to have a good system in place.


1. To make an infusion go smoothly, it is best to prepare the day before.  The most important thing is hydration.  Get that water bottle out!  Her infusions are given by IV, and a well hydrated body makes it much easier to get an IV in place.

Image result for drink water
https://pxhere.com/en/photo/1434971

2. Pack a bag to keep your kiddo busy.  Sitting during the infusion can be really boring.  My daughter's infusion sometimes take 6 or more hours.  Sometimes she falls asleep, but not always.  We bring a bag with homework (super fun), games, crafts and a comfy blanket.



3. You are going to need to eat during that long day.  Bring snacks from home or money for the hospital cafeteria.  My daughter loves getting lunch from one of the restaurants in the hospital.  It's a  treat that makes the day more bearable.  Either my husband or I go pick up the lunch and bring it back to the room for her.

4. Even though spending the day sitting in the infusion center is not ideal, I always try to remember to be thankful for that time with my daughter.  A day spent together is always a good time to take a deep breath, relax and appreciate each other's company.  One day,  she'll be a moody teen who may not want my company anymore! 
Labels:

Comments

Post a Comment

Popular posts from this blog

Life's Surprise Turn - The Beginning

How It All Began It was a normal Tuesday.  The kids were at school.  My husband and I were both working.  I was in a meeting when I saw my phone ring and the number on the caller ID was my daughter's school.  That's never a good sign, right?!   That moment is when our life took a surprise turn. My oldest daughter was a healthy, active 5th grader.  The school nurse called on that normal Tuesday, to tell me that my daughter came to the school clinic complaining that there was a problem with her vision.  When my daughter looked at her class assignment, she realized there were sections she couldn't see.  I knew in my gut that something was very wrong. We went to our local hospital emergency room.  They did a CT scan and didn't see anything unusual.  The hospital discharged her, but as we were walking down the hall to leave, my daughter vomited.  That totally gross, but divine intervention, bought her an overnight ticket into ...
Post a Comment
Read more

Never heard of NMO? Neither had we!

NMO?  What's that? When my daughter's brain inflammation was first discovered, the doctor's told us it could be ADEM or MS.  ADEM is when a patient's immune system attacks their brain and/or spinal cord. It is usually an intense but one time attack.  The doctors were hopeful that her case was ADEM, and she could be treated and go on to have a totally normal life.  They warned us that if her immune system continued to attack her body, that instead we would be talking about a possible diagnosis of Multiple Sclerosis (MS).   My daughter's immune system didn't give up. It kept attacking.  We explained to her that her immune system was like the super hero of her body.  The super hero was there to save the day and attack germs, but for some reason her immune system was on over drive.  That meant her super hero was confused and working too hard.  Instead of attacking germs, it was attacking her brain.  Not cool! As her sympt...
Post a Comment
Read more

Helping Your Child Through an MRI

My daughter needed her first MRI when she was in 5th grade.  As we struggled to find the correct diagnosis for her and as her symptoms evolved, she needed several more MRIs.  She has actually done so many that I have lost count. At one point, she made an MRI machine for her Barbie.  I guess even Barbie needs an MRI every now and then! Through those MRIs, I've learned a couple things about what to expect and how to make the process less stressful. 1. My daughter did MRIs at 3 different hospitals.  In all but one, I was allowed to go in the room and sit with her the entire time.  It is okay to ask if you can stay with your child.  The hospital might say no, but maybe they will say yes. 2. For one of her MRIs, she had to be sedated.  For that one, I was not allowed to be in the room with her. 3. Bring a CD with your child's favorite music.  The hospital will often have music available, but if your child has a favorite, bring that al...
Post a Comment
Read more