Wednesday, November 16, 2011

Change of plans.  The surgery had to be cancelled because Skyler decided to go neutropenic on us and they wont operate on someone with no immune system.  Over the weekend I knew he needed blood because he has been so tired and pale and he has also had bad headaches.  I called in and had them see us yesterday to see what his crit was and to do a type and cross.  He definitely needed a blood transfusion.  His platelets were also low but not low enough to transfuse yet.  They ordered the blood last night and we came in this morning for the transfusion.  Before we went into clinic we went to had a consultation with the surgeon to see where he could place the port.  He decided he could go through the same vein his dialysis catheter is already in, but just place the entry site a little bit toward the center of his chest so its not in the same place as his line is now.  They will also make an incision in his neck because they have to tunnel a wire through the vein first so it doesn't collapse when they put in the new line.  We cancelled the surgery tomorrow but rescheduled for next Wednesday hoping his counts will be up by then.  Dr. Lemons also had us stop all oral chemo at home for this week and we will recheck his counts again on Tuesday to see if we are good to go for the following day.

His ANC has dropped so much because they upped his chemo last month and I guess it was too much for his little body to handle.  I have been told it takes a couple months or so to find the right dose that will keep his counts in the range they want it.  Every kid is different so it takes a little bit to find just the right dose.  I'm actually grateful we went into clinic today.  Not due to the fact that Skyler needed blood but it gave us a chance to talk to the child life specialist about him getting his port.  She showed us an actual port that they will place and gave him a doll that had one in it and showed him how they access the line.  He has been so worried about this and has wanted to talk about it several times a day because he is so scared, but after talking with Rochelle he felt much better about it.  She even left us with all the supplies to take home so he can practice accessing his "cancer friend" all by himself.  This is like the port that they are going to place.

This is Rochelle showing him the steps they take to access it.

As soon as we got home he drew a face on his little friend.  He said he made it a grumpy face because getting a port accessed would make him grumpy too.  He also drew a heart on him.  So cute!

This is him accessing his friend all by himself.  That's the alcohol he cleans him with first.  He was actually really good at it.  When he was all done he said "I could totally be a doctor"

This is the part where they poke him to access the line.  Don't worry we took the actual need part out.

Putting the bandage on.

I let him hook up an old line of his and fill it with water so he could give him some chemo

This is such a refreshing site to me!  That's another weird thing cancer does to you.  A big bag of blood doesn't make you gag it brings a big smile to your face because you know its going to give your child his energy back and give him some color.

After Skyler was done pretending to access his doll he still wanted to play with it, so I let him go through all of his old medical supplies I don't use anymore so he could find some doctor stuff to play with.  This is a video of him taking care of his little friend. 

(I wrote this post last night so its a day off)


Shaylynn;) said...

"I could totally be a doctor"

I think of you two often, strangers or not.

Wishing the best, as always.

Brice.TawniWilliams said...

He IS going to be a doctor! It is amazing and sad at the knowledge he has. We think about you all the time..

Jacob said...

Jericho is sitting in my lap as I read your blog. He remembered the last time we looked and asked, "Is Skyler better now?" I told him he's doing lots better and he looked at the pictures and says, "Skyler is getting bigger and bigger and bigger!" Now he's off to go find his superman costume so he can be like Skyler!!
Thanks for posting and updating Crystal, I think of Skyler all the time and I'm glad he's doing better. I'll pray for his counts to come up so he can go forward and get finished with this treatment. <3

suzie said...

Continually praying for your little guy! Seriously he is just a veeeeeeery extremely special and ALWAYS on my fam's minds.