Thursday, December 2, 2010

The day and night after surgery went well.  I was actually so surprised at how well he was doing.  His platelet count went up to 35, which is a lot better than 3, his vitals were really good, and he was resting and didnt seem like he was in alot of pain.  However, yesterday and last night werent so great.  He has been getting high fevers that just wont go away, so he has been miserable from that.  He is having pain in his tummy where is huge liver is, he is getting a rash on his belly and arms that they think is cellulitis, he has been throwing up and having diarrhea, the whites of his eyes are almost completely yellow now, and his platelet count today is 11.  A platelet count of 11, are you serious?!  This surgery was supposed to make is so his platelet count go right up and now they are going back down to a low number!  I hope they didnt take out an organ for nothing. 
 I am just so far past frustrated today.  He looks so small and fragile, his eyes are sunken in with big black circles underneath, he just looks sick.  I mean I know he is sick, but sometimes I can just pretend he is ok when he looks ok.  Today I cant pretend, he is a sick boy and I finally have to accept that.  My heart is hurting today.  I just cant stand seeing my beautiful, precious, perfect little boy like this.  I hate that someone so innocent and so young has to endure something like this day in and day out.  I hate the fact that I told him daddy died because his body got sick and now he knows that his body is sick.  That kills me.  Cancer is horrible enough in itself to have, but throw in a whole heck of alot of more complications and its just torture. 

17 comments:

Erin said...

Crystal,

I am a friend of your sister, Summer. We were good friends when they lived in Castle Rock, and I found the link to your blog on her facebook page. I actually remember meeting you and Skyler (as a baby) a few years ago.

I've been following your blog from the beginning and my heart just breaks for you. I too, have a son that is the same age as Skyler and cannot imagine the horrific pain you must be enduring. I'm so sorry you and Skyler (and the rest of your family) have to bear this burden. Please know that you and Skyler are in my thoughts and prayers daily. Hang in there Mama!

With Love,
Erin

Jen Beckstrand said...

Crystal,

I am crying so hard for you right now. I know we all say this a hundred times over. But you are in our prayers. I hate how helpless cancer makes you feel. I just wish there was something ANYTHING I could to do help. I love both so very much! Tell Skyler that we need him to keep fighting because we miss him sooo very much and want to play with him again soon! I am so sorry you both have to go through this. You are amazing and I look up to you so very much.

Anonymous said...

Saying many prayers for you and your tough little boy. Hopefully his setback last night is just due to the shock of the surgery and he'll pick up bit by bit since that spleen is gone. Surgery is hard on the body and he's been through a lot. Keep saying prayers and keep faith that tomorrow's labs will bring some good news. Hugs.
-Krin (and Mathias)

Amanda said...

I am so frustrated and angry for you and Skyler. Enough is enough. you both need a break. Our prayers and thoughts are always with you.

Love,
Amanda Brady Millie and Austin

johnjillhuz said...

Oh sweet Skyler, please get better! He is such a tough boy. You have both endured so much. It's just so hard to understand why you both have to endure this day in and day out. Crystla, you are one amazing woman. Skyler is so lucky to have you. You are such an example to me!

I just said a prayer for you and for Skyler. Please know that if you need a should to cry on, I am available 24-7 in room 4412!

Love,
Jill

Anonymous said...

You guys have been on my mind a lot lately. This morning I woke up and the first thing I did was pray for you and Skyler. I hope he gets well soon. You are very strong and have been through a lot. I am so sorry for you guys.

Heather said...

I just want you to know that Jonah started saying his prayers by himself lately, and he always remembers to ask to bless Skyler. I hope you are doing well, if you need more movies to watch (Raymond season 2?) please don't hesitate to call. I know that there must be hours and hours to fill with distractions for you. Hang in there, he's made it through so much, he's a strong little fighter. We love you.

Heather and Matt
(801) 541-0347

Anonymous said...

I can't stop crying thinking about porr Skylar. My mom was sick with cancer and it was bad enough watching a grown adult go through that stuff let alone a poor innocent child. I pray and cry to the lord evey night that he will help Skylar get through this. IO can't even start to imagine the pain and emotions you are going through as a mother. Just watching your poor little boy be sick and no that there not anything you can do to get him to feel better. I will be thinking and praying for the both of you!!!

Amy said...

Crystal, It breaks my heart to hear your little Skyler suffering.
remember a few things though. he's battling a fungus infection. When they start pounding out the bad stuff in their bodies from the medicines, their body will naturally try to kill the heck out of the yucky stuff going on and therefore the fevers go up, and they get even more sick than when they started. When my son had pseudomonas bacteria....every time they started the antibiotics he would get worst right away. It would take a few days at the very least before we saw any improvment. Fungual infections make these kids very sick. So, as awful as the fevers are, that's his body's way of kicking some fungus butt and anything else that tries to mess with him!
We are praying with all our hearts that his body will start to heal.

Brittany Hepworth said...

Dear Crystal,
We found Skyler's Story Blog through John and Jill Hughes. I served with her in the YW's. We have been praying for their little Erin all the time. After reading Skylar's Blog, I am absolutely amazed at how much the Savior has been right by you through this whole journey. Gently giving you the strength and courage to endure. He is over Skyler too. I cannot even begin to imagine how hard ti would be to sit vigilantly over your young boys side, watching helplessly as he goes through all of this. He knows that you love him, more than anything! He even whispered it to you a few days ago. I felt his deep love when you wrote that on his blog. The spirit spoke so strongly to me, confirming that deep love. From Skyler, From the Savior, From your Husband, and so many others.

It's ok. Your heart can hurt today. Your eyes can weep. Mine are. Just know that your precious boy is teaching and touching so many by your blog. I am grateful that you are sharing.

We are praying for you and Skylar now too.
Love,
~Brittany Hepworth~

Anonymous said...

Dear Crystal I am so very, very sad I really thought that he would be on his road to recovery after surgery. It has to be terrible to watch him be so sick. I hope you know how many people love and support you we would do anything to take you out of this situation. It is so horrible! Please hang in there you have been a rock and I know for Sky's sake you will continue to put on a good front. I love you & I'm here!
Denise

lindsay Roscoe said...

Oh Crystal we all love you both so much and you have every right to feel tired and frustrated and pissed and overwhelmed and sad and every other emotion that ever excisted in this world. The frozen winter ground will give way to beautifulspring blossoms...eventually. It has to too! It can't stay frozen forever. We are keeping prayers faith and hope going every second of everyday.

Melissa said...

My heart hurts for you as a mother to have to watch your baby go through so much! It's okay to cry and it's okay to hurt! I can NOT even imagine what you're going through. You are in my prayers every day! Skyler is in our prayers every day and he is such a strong little boy.

Kristin said...

Crystal, my heart just aches for you. How can anyone bear to see their child like that? How did something like this get into our world...and why can't we get it out. (((((((hugs))))))))

Erin said...

Crystal, my heart is aching for you. I am a mom to a little boy a little older than Skyler (my son is 5) who also has ALL. Nolan was diagnosed when he was 3 1/2, and like Skyler, every bad thing that could happen, did happen. It is definitely a long road to travel.

Skyler is so lucky to have such an awesome mom, to have you by his side. My thoughts and prayers go out to you and Skyler. The little dude has to catch a break soon.

All my love,
Erin

Briana said...

I've read this post several times and wanted to comment, but just haven't known what to say. I'm so sorry for all you and Skyler are having to go through! I told me husband the other day that when I get to create my own world, I'm pretty sure I'm not going to allow parents to have to watch their children suffering so much. It's horrible. We pray daily for Skyler and that you can receive the comfort that you need in this very hard time.

Reading what other people said- about how surgery is traumatic and maybe it'll take a little time for him to really start improving from it - made me hopeful. He's got to be on the upswing soon. Lots of love to you guys!

Anonymous said...

Crystal,
I follow your blog each day and was so sad to hear that Skyler is struggling...again! I know it is hard to watch your child suffer. It's a helpless feeling! It's hard to do what you're doing day after day. But I think one of the reasons that Skyler is such a strong fighter is because his mother is strong! Hang in there and know that you are never alone! We, along with many others, are praying for you constantly. We love you!
--Marie and Rachel