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

Explaining NMO to a Child

Someone asked me recently how to explain Neuromyletis Optica (NMO) to a child.  Not an easy task, I can tell you from experience! When my daughter was diagnosed, she was 11 and her sister was 8.  We explained that everyone has an immune system.  Our immune systems are like the superheroes of our bodies.  They fight off germs to help keep us from getting sick.  For some reason, big sister's superheroes were confused.  They were fighting too hard.  They were attacking the germs, but they were also attacking her body too.  Those crazy, confused superheroes!                                                          We talked about how our brains have these things like wires going through them. The wires have a special covering to protect them called myelin.  The myelin is kind of like the protecti...
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

Does my child need an IEP or 504?

Your child is out of the hospital, hopefully has a diagnosis and now is ready to go back to school.  Now what? Depending on your child's needs, you can talk to your child's school about different levels of support.  My daughter had a seizure, so the first thing the school needed was a seizure action plan.  This is a plan the doctor created with directions on what to do if she had another seizure.  I needed to provide the school with the seizure action plan (signed by her doctor) and a medical form (also signed by her doctor) for her prescription rescue medication before she could go back to school.  A similar protocol is often used for children diagnosed with diabetes.  Schools may require a diabetes action plan that is signed by the doctor and includes information on how to manage the child's diabetic needs.   If your child is doing well in school and able to do things like he or she did before?  That is awesome.  Do a little happy...
Post a Comment
Read more