Saturday, October 30, 2010

This week has been very eventful with some ups and downs...mostly ups though.  I'll start with the downer first.  That night after they took Skyler's breathing tube out they had to put him back on the BI-PAP mask because he was working a little bit harder to breath.  He also kept throwing up.  It would go into the mask and fill it up, we think he may have aspirated a little too.  They couldn't figure out what was causing him to throw up so much so they took him down to do a CT of his brain and sinuses because they thought maybe there could be some pressure building up on his brain causing him to throw up.  The scan came back and his sinuses are clear (finally...yay this is a good thing) but it also showed that his brain had some atrophy.  So basically his brain matter is shrinking and being replaced by fluid.  The doctor told me that the last scan he had a month ago showed a little of this but this scan showed it had progressed a lot more.  I looked at the scan and couldn't believe it, Sky's brain had shrunk ALOT!  The attending told me that he had never seen this progress this fast before.  He told me that Skyler could have brain damage and that he may never regain some of the skills he had before and he may have developmental problems from here on out.  Hearing this was so hard.  Now that his body is starting to get a little better its hard to know that his brain may never be the same.
Later that afternoon the PICU attending had the Oncologist come look at he scan and see what he had to say.  To my great relief he said that he sees this with chemo kids alot.  He says he normally doesn't see it as significant as a loss as Skyler's, but then again most of the chemo kids don't get brain scans.  I was told to put this to the back of my mind and deal with it when it becomes and issue because there is no way to tell how this will affect him right now.  So that's what I plan to do.
Now on to the good news.  Skyler spoke for the first time!  I wasn't there for it because I was down eating, but my dad told me that he said as clear as day "I want my mommy"  How precious is that?  Then later that night he was trying to say something so I took off his mask and he started crying and said "I just want to go home mom"  That was so hard to hear.  Of course I started bawling and had to explain again why we are here and that I haven't left him and I wont leave him until we can go home together.  Then he told me he loved me.  I started crying again, but these were happy tears.  I have been waiting to here those words for so long!  The most amazing thing about this is that I got to hear his voice again.  My little Skyler's voice that I have missed sooo much.  You never know how much you truly love something until it is taken away.  But when you have it back again its such a miracle and I never thought I could be this happy.
Skyler also peed for the first time in two months!!  Yay!  He told me he had to go so we hurried and got him up and he tried going in the urinal.  He tried so hard to get it out but couldn't so they had to straight cath him to get it out, but he made urine and that's all that matters.  He is now going to be on dialysis for just eight hours a day to see if we can get them working more.
Skyler was also to sit up in a chair for the first time.  He did so good and I bet it felt so good for him to get out of that hospital bed!  All his docs and nurses had to come look at him.  They all looked pretty surprised and kept saying how good he looked.  And today I was able to hold him again for the first time in eight weeks.  Man that felt good.  I sat in the chair while they lifted him off the bed and handed him to me.  Honestly it felt like I had just given birth and I was holding him for the first time again.  I couldn't stop smiling.  I got to hear his voice and hold him.  I don't think I could be happier right now.  Miracles can happen :)
Also he was able to drink today for the first time in about nine weeks.  Even before he was intubated all he wanted was a little drink and we couldn't give it to him.  So to be able to finally give him a drink of water was awesome to say the least!  He also had have of a Popsicle.  Way to go Sky! 
Oh he is also just on a nasal cannula instead of the BI-PAP mask which is wonderful for him.  So to sum up, Skyler had a good week and I pray that he will continue to go down this rode.  Keep up the good work bug!
                                         This is a pic of me and Sky right after he peed...
 Skyler taking a sip for the first time.

Skyler sitting up in his chair.
Grandma and Grandpa wearing there Super Skyler shirts.  I'm not quite sure whats on my Dads shirt, lets just pretend that's not there :)


JACK's house said...

Oh Crystal that is SO AWESOME! He is looking incredible!

Vintagesouthernlife said...

I don't know you but you and Skyler are in my prayers.
Just keep trusting because all things are possible through Him.
Prayers and blessings,

Proud Wifey And Mommii of 3 said...

Saying prayers for Skyler& your family

Misty Jo said...

That is so awesome!!! Love you guys:)

Catheryn @ PinkBibs said...


Am dropping by from Ruth's blog.
My prayers with Skyler and your family. May God's strength be with you and His healing hands be upon Skyler.

God bless.

Ruth said...

Praying much for Skyler!


Virginia said...

I don't know you but I’m praying for Skyler,you and your family.
The miracle of Jesus LOVE can do anything. Keep your FAITH BIG & STRONG!!!
Much Blessings,

Chelsea said...

Each time you post the news gets better and better! I get so excited to check your blog to hear more GREAT NEWS! Way to go Skyler! You are both awesome and so many people are rooting you on! GO SKY GO!! XOXOXO

Anonymous said...

Praying for Skyler and for all his loved ones. Weary mama, God knows your heart too. He is with you. Prayers, prayers, lots of prayers going out for all of you.

Amanda said...

That boy of yours is AMAZING!

Charlotte said...

Bless his heart. What a brave little guy. I'm adding my prayers for Skyler and all the family.

Lindsey Hill said...

More good is news!!!!!!!!!! That is so great!!!!! I am so happy for you Crys! Miracles do happen. Emma had to give a talk today in primary and when we asked her what she wanted to talk on she said how our prayers have been answered with skyler, cause he is finally getting better!!!! We will keep bringing the prayers cause they are working!!!! LOVE YOU!!!!!! Way To go Sky!!!

JEANNE said...

Our prayers for Skyler and your family will not stop until we hear Skyler has improved and is on the mend. God bless all of you during the process of recovery. Especially for all you have endured during Skyler's illness.

Blessings and sincere love is sent your way.

myletterstoemily said...

oh sweetie, i am so sorry about your
precious skyler and will add him to my
prayer list.

i praise God for the sweet little triumphs
and will ask Him for even greater ones.
i will also ask Him to surround your little
one with His wings and angels.

i came here from 'ruth's'


Padilla's said...

I am so happy to hear!!! I was thinking about a song that will make you cry but is probably exactly how you feel right now. I have a little boy who is disabled and I listen to this song all the time. Here is a link to it.
I hope you love it as much as me. Prayers to you and Skyler

Rachel Padilla

lindsay Roscoe said...

Your posts make me think about how much more I need to appreciate my kids. I am all to aware that anything can happen in a day. Thank you for helping us all to remember to count our blessings. I can't even imagine they love and joy and more you must have felt when Skyler told you he loved you. Many love you both!

Dani said...

I am in tears right now! These little kids know how to FIGHT! Sky is one little fighter. Oh man, how those words just pierce and Chase was not there nearly as long as Skyler. I can not even imagine how bad you wanted to just pick him up and take him home when he said he wanted to go home. Also to hear him say I LOVE YOU! What a miracle. You are such a strong team. You and Sky will be home before you know it. Hope your stay in the ICS is short and he just keeps getting better. I know we haven't met, but I love you guys. Just keep fighting!!!!