I have had a few people ask me what it is like to have a child who needs Remicade infusions. So today we took lots of pictures so you could see...
We start off by using this numbing cream. It takes about an hour for it to really work. Austin uses it in two different locations, so that when they get ready to put in his IV they will have 2 places to choose from.
We use press'n seal to cover the cream so it doesn't get on his clothes.
On the way up to Primary Children's Medical Center. It is about a 35 minute ride if there is no traffic.
Austin brought his camera today...he wanted to help document his day...but the battery died before we even made it in to his room.
The hospital is under construction...it is kind of a pain.
The doors into the actual hospital are huge revolving doors...they have cool fish displays inside the glass. Austin was freezing, so he wrapped himself up in his fleece blanket.
Once inside we have to register and get his wrist band and room number.
Then we go down to the Rapid Treatment Unit...that is where they give all the infusions.
You have to pick up the phone and they will open the doors and let you in.
We had to take a picture of this, the check in desk has all of these cute potato head dolls...we love them.
One of our favorites is the Batman one, and as you can tell Austin is in a funny mood and refuses to take a "real smile" picture!
They take his weight, height and temperature.
Then we go to our assigned room.
The first thing Austin always does is order food...they have a menu just for the kids. It has everything you can think of...and they can order as much of it as they want.
They have a TV and DVD player in each room...so to pass the minimal 4 hours, sometimes it takes longer, we bring movies. Austin picked Batman movies!
Then we get down to business...they take his blood pressure, check his heart, temperature again...all that good stuff. He has a Nurse, a tech, and his own pharmacist on Remicade day.
They give him a heat pack to put on his arm to prep it for the IV.
That is when his first round of food arrives...Toasted beagles, bacon, and chocolate milk shake...food of a champion!
They have special people...the IV Team...that do his IV every time.
They do a blood draw for labs and insert the IV that all his medications will go through.
He takes Tylenol to prevent a fever.
They give him Hydrocordizone through his IV to help his body not build antibodies against the Remicade.
Then the actual Remicade arrives and we start the infusion. It takes about 3 hours to give it to him.
This is what the boys do...eat :)
And I play on my phone...read...
and watch movies...it is all very exciting!
Round two of food arrives...butterfly shrimp and chocolate cookies.
He got extra cold today...so they brought him an extra blanket. A fleece blanket with footballs all over it, they said he could even take it home with him! He was pretty excited about that.
At this point we have been at the hospital for 4 hours...Remicade infusion is over, no side effects yet. But they make you wait 30 more minutes to make sure. They take out the IV and we wait.
His Dr. came in to talk to him while we waited.
This is Dr. Varier, he has been Austins GI Dr. since day #1. But sadly he is moving to Oregon in just a few months.
Austin and him even have a cute hand shake they do...he is sure going to miss him!
Time to go home. Austin loves when it is time to leave, he always asks for a wheel chair. Not because he is too weak or tired to walk, but because he likes to push himself out and see if he can push it over the door humps. He is actually pretty good at it.
Well that was our little documentary of Remicade Day for Austin. We don't have to do another one for 8 weeks. He will have to do them every 8 weeks for the rest of his life they tell us. But in reality it will be every 8 weeks until his body stops responding to it. They have told us that 70% of kids stop responding within 10 years. But a lot can happen in 10 years, new treatments and maybe even a cure!
