Posts Tagged ‘children’s hospital’

Rituximab Infusion #1

Wesley was scheduled to be at the Kentucky Children’s Hospital 8:30 Monday morning.  But in typical Penny fashion, we were about fifteen minutes late. (I really do my best to get to places on time, I don’t know how I am always late)

Image

Dr Kiessling of course had just been in ten minutes before we got there.  So we had to wait for him to come back.  He had other patients on the floor so it wasn’t a huge problem.  We again talked about the side effects and what we should be watching for during the infusion.  He would be in clinic all day, but the clinic is connected to the hospital and I made sure he had his running shoes on just in case we needed him.  He reassured me that he did.  There were two residents who were right there constantly if we had a problem, and if it got serious, Dr Kiessling would be there fast.

While we waited for the meds to come up from the pharmacy, we tried to get comfortable in the room.  Poor Brad just wanted to sleep.. and so did Wes… and so did I, but how could I sleep at a time like that?!  So, I just took pictures.

Image

I had all the presents ready and put them up on a shelf.  Wesley wanted to open them as soon as we got there.  I let him pick one out to open.  He ripped the paper off and found a Mario shirt inside.  It wasn’t too much longer that his new pajama shirt was off and the Mario shirt was on.  I told him no more presents until they did his iv.

We took him into the procedure room to do his iv.  As I mentioned before, that is not at the top of Wesley’s to do list… but it had to be done.  I held him and he cried the whole time.  Not much could distract him.  Three nurses were there to help.  It went in very good, and apparently they got a good vein because as soon as it went in, blood was shooting out everywhere!  It was all over my leg and one of the nurses was down there washing my leg.. lol.  I think at that point Wesley thought it was kind of funny, so he got better.  His iv had a name.  Charlie.  Charlie was a girl.  Wes hooked me up with an awesome necklace and bracelet out of the treasure box.

He had to be premedicated before we could do the rituximab.  This was to minimize any reactions that he could have.  They gave him Tylenol, Solu-Medrol and Benadryl.  We had to wait thirty minutes for that stuff to start doing it’s thing so we played in the playroom.

Wesley loved the playroom when we were there a year and a half ago.  It was THE place to be.  As soon as we got in there and looked around, he informed me that it was boring.  So we checked out the library and he found a car and some books to read for later.  He was much to big for the car, but he road it around all day anyway.

After thirty minutes was up, the rituximab had been delivered and was ready to be started.  Oh, was that one of the scariest moments of my life.  We hooked him up and stayed in the room after that.  His blood pressure had to be monitored.  We had to keep a good check on his temperature also as it could cause fever.  We knew what could happen, but didn’t really know what to expect because every person reacts differently.

After the first fifteen minutes, my heart was much more at ease.  We were mostly past the part that he could experience anaphlylaxis.  I let Wesley open his next present which was a couple of little Play Doh construction thingies.  He really liked that.  It kept him busy at the first of the infusion and it was something calm to do while we sat there.  PBS Kids helped too!

Each hour, as long as Wes had no reactions, the nurse was ordered to up the speed of the infusion.  Each time, I panicked a little, but the kid never reacted and it went so much more smoothly that I would have imagined.

We were moved into another room to spend the night.  It was about dinner time when they moved us.  Well, from past experience, I know that they are not capable of making my kid food that he can eat that won’t kill him.  I brought food and Brad’s mom showed up with more food.  I was in the room cutting broccoli up, peeling potatoes and shucking the corn!  I don’t like using the microwave to cook, but it works in a pinch.  I am sure it looked weird, but atleast my kid was safe.

They brought up the plate that was supposed to be for Wes, it had the big red paper on the tray that said he was allergic to milk, soy and egg… right next to that paper was a plate full of breaded and fried chicken with green beans and corn.  I would say that from the way it looked, that chicken was breaded with milk and egg, then fried in soy.  The veggies also looked like they had oil on them.  Ah, the frustrations of food allergies.  I am still just appalled that a Children’s Hospital isn’t equipped to deal with serious food allergies.  That is another story.

It’s all good, cause Brad ate Wesley’s tray and Wes had fresh stuff that I fixed for him.  There was plenty of Wesley friendly food that me and him shared.

We stayed up and played Play Doh, painted and most notably, played Mario!  Wesley has been banned since the end of July.  I figured now was the best time to give it back to him!

Then I popped some popcorn per Wesley’s request and we ate it before we went to sleep.

We woke up and got out of there fast!  Me and the boy slept all day after we got to the house!  Here we are home sweet home in our own bed.  So wonderful.

Since Wesley’s body handled everything so well, we will go back up next Monday and do another infusion as an outpatient.  It should only take about three hours and we will come home.  They will do blood work and as long as all the CD-19 cells are wiped out, he won’t need another infusion.  If they aren’t, we will need to go back two more times, seven days apart.

Wesley’s immune system is seriously suppressed now.  The nephrologist told me that there have already been reports of the flu this early in the year.  We were cautioned to keep Wesley out of all public places and away from anyone who has any sign of sickness.  Last year, during the chemo, we did this.  But that started close to December.  This is only August!  Seems like it will be a long time before Wesley will be able to do normal things again.  It is so worth it to keep him healthy and out of the hospital.

Advertisements