Posts Tagged ‘infusion’

Cleaning House

First, to update those who don’t know about Wesley’s infusion yesterday.  He had yet again zero reactions.  Hurray!  It went well except for the part when he didn’t want to get Charlie back in his veins (His IV’s name is Charlie)  He has always done good with things like this.  When he was younger, he was very brave and never even cried.  As time has gone on and needles have become a much larger part of his life, he always likes to make a little “show” to let us know that he is unhappy.  My hypothesis for this is in an earlier post.  Now, there are usually always tears and begs and “no’s”.  Well, yesterday it was all crazy.

Brad just left the room to go to the car and get some info for his work.  That left me and Wes with each other to deal with Charlie.  Again, normally not a big problem.  Just some tears and protests and and we are done.  Not yesterday.  He threw A FIT.  He was struggling with all his might to get away.  I tried every trick I knew and nothing helped.  There he was with two choices before him.  He could either calm down and let me help him like always, or he had to be wrapped in a sheet.  Personally, I hate the sheet.  It seems so mean.  But we had to do something.  I talked to him as calmly as possible and explained the options.  We ended up tying the little guy in a sheet.  OH THE HORROR!

He was so mad that he didn’t even want his complementary after shot toy!  He shunned everyone around him for two hours.  People would talk to him and he just looked to the sky in the opposite direction as if he were the only one in the room.  He is normally super talkative to the nurses, but not after that ordeal.  The boy can definitely hold a grudge… and he does not get that from my side of the family!

As time went on, things got better for him.  He ate A LOT.  Like two days worth of food in a few hours.  Steroids, I am sure, are the cause of this.  He was also very drugged from the Benadryl, so it was like he was in this weird daze uncontrollably eating mass amounts of food.  Thankfully, I brought along lots of healthy stuff.

Then, our friend and his little girl showed up for a visit.  Their baby boy is in the NICU right down the hall from us, so they are regulars at the hospital right now too.  At first, Wes was ignoring his best bud Melea.  That was when he made his turning point from grudge holding to being a better boy.  Anytime a pretty little girl shows up, his behavior gets better.

Next, the clown came by.  That was quite the experience.  Poor Brad got drawn into his silly acts.  The clown made Brad dress up and dance for us… All in front of his best guy friend.  How embarrassing.  He handled it very well.

After that, everything was much better.  Wes put on his new super hero outfit that my dear friend got him.. He was skating down the halls on his IV pole like Super Man.

The next step is heading back up sometime before Monday to get blood work to see if all the CD19 antigens are wiped out.  If so, we are done for a while.  If not, we are in for two more Mondays.  Getting up at 6:00 am every Monday driving to Lexington is getting old fast.

The house is quickly becoming a hazmat zone.   Admittedly, I am not the best house keeper to begin with.  I loose focus easily while I clean… or do anything else for that matter.  I have been told by certain people that I have the attention span of a goldfish.  It is so hard to keep going when right behind you there is a little boy undoing what was just done.

I have been watching Hoarders on Netflix before I go to bed at night.  It has become a huge inspiration for me to purge my house of all things not useful or super sentimental.  But, I watch it, go to bed and wake up to do daily chores, then the big stuff gets left undone.

Today, my most wonderful Granny came by to help me.  We got SO much done.  If you walked into my house this second, you wouldn’t even know that we did anything.  But look under the stove, open the fridge, look inside the cabinets.. That is where we did all the work today.  I got rid of pots and pans and plastic ware that has just been sitting there.  I threw away all the moldy stuff from the fridge and scrubbed the whole thing inside and out.  I cleaned out Wesley’s closet and the only thing left is clothes that fit him!  We worked hard, but if feels so good to be free of a lot of stuff that is no longer in use or needed.  I have much more to do… Still gotta go through Wesley’s three drawers of pajamas.  (Have I mentioned that I have a kid pajama obsession?)  There are things in there that he hasn’t worn in two years.  My closet will take days.  I really don’t want to tackle that, but I definitely can’t wear 0’s and 1’s or 2’s, 3’s or 4’s… and many other sizes for that matter.  What is the point in keeping it?  This deep cleaning business has been a long time coming.  I am so glad my Granny was here to inspire and help me to keep going!

It’s so nice to not feel like I am walking through an episode of Hoarders.  My house lost about 400 pounds today!  Hopefully I will keep the motivation up and finish!  We are having a yard sale not this Saturday but next.  Can’t wait to get rid of things taking up space in my house and my life and get some much needed cash!

How do you keep the clutter down in your house?


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)


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.


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.

Weekend Fun

I think our weekend was mostly successful with fun.  The wedding went well.. It was all fun and games until Wesley started being a wild man. We both left crying per Brad’s demand…. Well, he didn’t demand that we cry, just that we leave, which caused the crying.

Then when we got home, I left Wes with Brad and got some much needed alone time at none other than Walmart.  I shopped for pajamas for the boy to wear during his treatment so he will be comfortable.  They are Wimpy Kid pajamas.  My kid is certainly not wimpy, but he loves those books!  I got a few toys for him.  Thankfully when I got home, the boys were sleeping and I got a chance to wrap his little presents.

I got him a couple of Play Doh truck toys.  One is a road roller that you can build a road with and then flatten it out.  I got him a Mario shirt, because if you know my kid, he LOVES Mario!  Can’t get enough of it.  Got some glow sticks because what is more fun in the hospital at dark than glow sticks?!  Well, I am sure it’s not that much fun, but it must be better than the hospital at dark and no glow sticks… right?  And a few other dinky things.

I am running on not much sleep.  I have had a cold and after all the crying yesterday it made it worse.  There was almost zero sleep last night.  My head has hurt all day today.  I took Wes to the water park as I promised him.  It was very tiring, but very worth every second of it.  It was just me and him.  I played on all the kid stuff with him and it was good fun.

I am always with him, always.  But it seems like there are always things to get done around the house and I can’t give him my complete attention.  It was very nice to be able to completely focus on him and do all the things he wanted to do.  I think it was a wonderful day, sickness and headache aside.

We sat down to eat for a few minutes and we totally had a grown up conversation about how the hospital experience will be.  He seemed to understand very well.  It made me feel good to listen to his concerns and be able to give him all the information I could so he will be ready.

Our bags are packed.. We will be leaving in four and a half hours.  I must go to sleep.  I will update the situation tomorrow night!


The dreaded day is almost here.  I got a call from Wesley’s nurse, Stephanie, yesterday to tell me that the insurance approved the rituximab.  I knew it was coming, but I was very unprepared when she told me that I should bring Wes in this weekend.

I was at work when I got the call.  I hadn’t even told Wesley anything about it.  He has begged me to take him to the water park all summer.  I talked to Brad about it, then called Stephanie back and asked her if it was possible to come in on Monday to do the infusion.  I really wanted Wes to have at least one more fun day before we destroy his immune system.  Thankfully, she said that would be fine.

When I came home from work last night, I planned on sitting down with Wesley and explaining it all to him.  But the information had already been leaked.  First thing he asked me when I walked in the door was, “Am I going to get a shot when I go to the hospital?”.

Before NS, my little man was so good about needles.  He didn’t cry.  He was always very cooperative.  I think he handled it so well because I always prepared him for it and let him know it would hurt for a second, but then it would get better.  When he was diagnosed with NS, we were being admitted into the hospital and this nurse insisted on wrapping Wes in a blanket to put his IV in.  They all held him down and I was at his face trying to comfort him.  Looking back, I totally should have spoken up and told them not to do that.  It really changed things for us.  Now, he cries every time we get blood work or anything to do with a “shot”.

So, there I was trying to explain things to my little boy that no little boy should even need to know about.  He was confused with the hernia surgery.  He was thinking that was why he was going into the hospital.  I guess we will be dealing with that one later.

My baby is scared.  During regular conversation, he will occasionally throw in a question about what is going to happen at the hospital.  I have tried to reassure him that I will be there the whole time and he can lay in the bed and I will lay next to him.

Last night, I couldn’t sleep because I was trying to think of ways to make this less miserable for Wesley.  I thought maybe I can buy him some new p.j.s to wear all day so he will be comfortable.  And wrap a bunch of presents for him to open through out the day.

The children’s hospital is very good about having plenty of things to keep kids busy.  I suppose I shouldn’t worry so much.

I always feel so alone dealing with this disease and the treatments.  Nobody that I am close to understands.  Wesley’s disease is invisible, you can’t see it.  People always just assume he is doing fine.  I feel like nobody understands a word I say when I am talking about it, and I am sure that is mostly true.

At work yesterday, when I found out that this rituximab thing is for sure going to happen, I was near falling apart.  I work in a pharmacy and one of the pharmacists that I work with has dealt with autoimmune stuff for years.  He has been on steroids, he has taken different medicines, he even tried one similar to what Wesley is going to have.  I really found consolation in him.  He himself has been in a similar situation as Wes.  It made me feel a ton better to talk to someone who is above my level in understanding this stuff.  I think he has no idea at all how much better he made me feel about this choice.

So, our weekend is about to begin.  We are going to a wedding today.  Wesley is especially excited about the “party” (reception).  Then tomorrow, it is water park day!  I don’t care if it’s pouring down rain.  As long as the water park is open, we are there!  I must make a trip for new pajamas and a few toys.  Then, Monday at 6:00 am, we are off to the hospital for an overnight stay to get my kid into a drug free remission.  As long as all goes well, we will be home Tuesday!