Monday, November 15, 2010

The most recent news with Skyler is that he is going to have to go the operating room to get his wound scraped out and closed.  The wound guy came in to look at it today and saw that there is another layer of dead tissue that is on the top of the wound now.  It's all yellow and gross looking and he said he wanted it to be a pink color.  He said he could scrape out at the bed side again, but thinks that it probably goes down to the bone and would rather do it in the OR.  The problem about taking him into surgery right now is that his platelets are too low.  They were at 7 today.  They could just give him a couple units of platelets before he went in and that would make it so he wouldnt bleed so much during the surgery, but the problem is if his platelets keep dropping low everyday then after they closed it it would bleed underneath the skin and make a pocket of blood that would be a problem.  And the platelet problem is not going to be fixed until they can take his spleen out because that is what is eating up all his platelets.   And they cant take his spleen out until he can recover more and is free of these fevers.  But he has had these fevers the WHOLE three months we have been here and its still a mystery as to why he still has them.  So right now I dont think there is a plan on how to handle this situation.  They put him on another antibiotic and will see if that helps his fevers at all, which I'm sure wont because he has been on this one before, but I pray that it will.  Its just a big frustrating cycle right now. 
They are starting Skyler on the regular road map for his chemo now, but they have to wait until his counts come up to 750 before they can give it to him.  Today he is at 100, but they are giving him shots everyday to make his counts come up faster.  Im so glad that he is able be on the regular schedule for chemo but it scares me whenever they do give it to him because thats what has caused all this other crap for him.  I still have a love hate relationship with this poison!
One of the good things this week though, is that Skyler has been getting out of bed more and is wanting to do more things now which is awesome!!  He wants to play games and color and do puzzles.  He also wants to go out into the halls which is huge for him, he cant though because his counts are too low right now, but its the thought that counts right? 
The problem Sky is facing right now though is that whenever he wants to do something fun, it seems like that is when his meds chose to start kicking in and he falls asleep pretty fast.  He tries so hard to stay awake so he can play more, but the meds usually end up winning this battle.

                                                     This is Skyler doing a puzzle........


This is Skyler when his drugs are starting to kick in....


This is Skyler after the drugs have kicked in....


Poor little guy, but its kinda cute though!


6 comments:

Michelle and Sean said...

praying they can find the right plan for Skyler!!

Glad to hear he is wanting to do more!

Briana said...

sweet boy! those pictures made me smile. i'm glad to hear he's wanting to do more.

but what a frustrating mess! we've been praying generally for him, but i think we're going to start praying more specifically for some of these things you're talking about. i hope they can figure out what is right to do soon!

JulieThomsonArnold said...

Crystal,My name is Julie.I met you and Skyler this summer... actually we made spring rolls together at Kat and Kerri's :)I just wanted to let you know that I have been following your blog and I think you are an amazing woman, and Skyler wow what a little trooper!!! I am so sorry that the both of you are dealing with this disease and the terrible effects of the treatment.At my High School graduation Ceremony my Mom fell very ill and days later was diagnosed with Leukimia...I was by her side for 5 years and I remember thinking to myself how terrible it was and I couldn't imagine a little child fighting this disease and I must say that has been my worst fear after having children.It is such a emotional roller coaster ride, not to mention torturous for the both of you.You have been so strong at dedicated.I want to tell you thank you for having the courage to allow us to share your story.My son and daughter were very sad to hear of lil Skyler's story.They can remember his tough guy lil attitude and his huge smile.We were hoping that there was something that we could do to help the two of you.I'm sure with his counts being low it wouldn't be the smartest thing to bring them to visit but if we could send him a little something to keep him busy or take his mind off of things. I know it would mean alot to my kids....Please email me @ jthomson@ontrac.com that way I can get a little more info on where to send things or if it is ok.Thank you Crystal and may GOD BLESS both of you!! Stay Strong my dear.

Ric and Meagan said...

I know that I dont know you but i found you through cami's blog. I follow your story everyday you blog, I am so touched by the strength that you have. You are so strong and so is he. He is adorable. I will keep you in my prayers. You will get through this.

Meagan

Ara said...

You don't know me, but I do follow your blog & my heart goes out to you. I send positive thoughts out to the universe every day for little Skyler hoping that things are improving for him. It makes my day brighter when I read that he's not in the PICU and that he's back up on the 4th floor. It makes my day brighter to see pictures of him doing puzzles, etc. My heart goes out to you at this time & I will continue to read your blog and send encouraging words out to the universe for you.

Anonymous said...

A high school student was really touched by your story and would love to know if there is any way we can help?? Please let me know if there is anything we can do to lessen the stress for Skylers mother and family. Praying for little Skyler and his family always.

jennifer.anchondo@hotmail.com