Tuesday, November 23, 2010

Well it looks like Skyler has a new fungal infection in his lungs and that is what has been causing his respiratory distress instead of just being fluid overloaded.  He still has a lot of fluid on him but the main problem now is a new fungus growing in his lungs.  This means that his central line along with his dialysis catheter have to come out.  He is scheduled to go down to the operating room to get the catheter out in an hour.  Since he wont have his central lines they will have to start about three new IV's in his hands and feet and instead of drawing from his lines everyday, it means pokes everyday.  He is still on the bi-pap, but if they have to increase the settings they will think about intubation, which means being sedated again. (And just when he was back to his normal self again dang it!)
They need to do another CT scan within a couple of days or so to see if this infection is anywhere else.  They are going to have to use contrast again which is another hit for his kidneys, but I talked to the renal doc today and she said that she is willing to let his kidneys go completely if that means saving his life from this infection.  They have dialysis he can be on for the rest of his life or even a kidney transplant later on if thats what we have to resort to.
As far as chemo goes, they are going to be giving him a maintenance dose of each week now instead of starting him back on the regular course.  So once again his cancer is on the back burner.  The surgeons came and consulted about taking his spleen out and they said he is just too sick right now to do it.  If it becomes an emergency situation then they are willing to take that risk, but for now that will also have to wait.
So basically we are back where we were in the beginning.  He is getting really sick again.  My day has consisted of crying and more crying.  Lately I have so happy and smiling and laughing, but today if feels like I have been kicked in the gut over and over again.  This just cant be happening again. It looks like this little stay in the PICU has turned into another long horrible stay.  Please keep Sky in your prayers tonight, I am one scared momma right now.

23 comments:

JACK's house said...

Oh Crystal...definately prayers coming your way

nsudburyfam said...

I just don't have any words. We will definitely be keeping you guys in our thoughts and prayers. We love you both!

Briana said...

Oh, I am so, so sorry Crystal! This is a terrible blow after he's been doing so well. I can't believe it! We will definitely be praying lots for you and Skyler!

Lindsey Hill said...

LOve you!!!!! Sklyer is such a fighter and brave little boy!! We love you both and will be praying extra hard tonight!

Misty Jo said...

We are praying for you guys!

Cami said...

I want to cry for you! I am so sorry and sad to hear this news! You both are in our thoughts and prayers. We will be back up in a few weeks for surgery, if you want to do lunch. I will come see you if that is ok. Go Skyler! You kicked this once, you can do it again!!!!

Anonymous said...

Oh no, I'm so heartbroken for you both. Prayer warriors unite!!

Dave, Cadance and Family said...

I am sending prayers your way for You and your little man!!!

AmberLee said...

I am praying for your sweet little angel and for you as well! I pray that at this time you will be able to feel our Heavenly Fathers arms around you in comfort.

Argyle's said...

I'm so sorry Crystal! You are both in our prayers every night. I am so sorry you and Skyler have to go through this all of this!

Chelsea said...

We are praying here. You and Sky dont deserve this and its not fair. Know I love you guys, we are thinking about you both and praying HARD! XOXOXO

Jami N. said...

Oh, Crystal. This news breaks my heart. He looked so much better when I was up on ICS this past weekend. I am thinking about you and Skyler and hoping for the best for you both.

Nick & Bon said...

Crystal, I am so, so sorry. My heart goes out to you. You and Skyler are both in my prayers. You don't know me, but if there's anything I can do or bring to Primary's, please let me know (bonnied@cheerful.com).

Anonymous said...

We are so sorry! This is awful! We will be praying for you!

Beth.. One Blessed Nana said...

Continuing to pray and to believe! Our God is mighty and powerful and He is the Healer. I pray that you feel peace and comfort in these trying times and that you feel the ministering Spirit of God upon you.

Jace/Jess said...

PRAYERS FROM US TOO...ALWAYS ALWAYS!!! Im so sorry you and Skyler have to go through this! Like Chel said ITS NOT FAIR AT ALL! Hugs and Kisses to the both of you!

Hannah said...

Prayer are with you for sure, Lord please just surround this sweet boy and mommy with your peace and strength, cover them in Grace and know it's all in Your hands. You don't know me but please know that does not stop so many from thinking and praying for you.

paul hill said...

Our prayers are with both of you. Is one strong little guy.
HILL FAMILY

johnjillhuz said...

Crystal, I prayed for you and Skyler in the St. George Temple today!

lea said...

Crystal, we havent met yet, but I want you to know I think of you often and ALWAYS have you and your little guy in my prayers! My little McKall is in ICS right now with a fever and I was hoping I could take a minute and come meet you. Ill wait...dont want to be a stress to you or skyler. Please know were thinking and praying for you! Hang in there...your boys an amazingly strong kid, and so is his mommy!

Kasey, Nicole, Lexie, and Kenzie said...

I am so sorry crystal. Both of you will be in my prayers. May heavenly father give you both strength and comfort at this hard time.

suzie said...

Crystal,
U don't know me, but I can not put into words the PROFOUNd IMPACT your absolute, pure, perfect little skyler has made upon my life. I do not and can not stop thinking about ur precious boy! I can NOT get over how courageous and brave he is....., he is one of our heavenly fathers MOST valient and choosen! I have two kids and I look at ur pictures and I can't fathom the anguish you are having to endure, and I am so unbelievably sorry. Little skyler has had to endure more than most do in their lifetime and that is just not right nor fair. I can tell you that he has been such an example to sooooo MANY! I truly look up to him, it makes u never want to complain again, b.c nothing can come close to his suffering. He is such a brave little fighter. I have put skylers name on the prayer roll in the Az temple. Crystal, you and skyler are truly remarkable and I KNOW heavenly fathers choicest (no kidding). Skyler and yourself are and will always be in our daily prayers.
With love,
Suzie

Dani said...

I am so very sad to hear all that you and little sky are having to go through. He doesn't deserve one minute of it. He is fighting so hard! Tell him to keep fighting! He is one tough kid and he is so lucky to have such an amazing mom! Happy Thanksgiving to you guys! We will ALWAYS be praying for you!