Tuesday, November 2, 2010

So Skyler's seizure the other night still remains a mystery to everyone as to why it happened.  They haven't been able to figure out what caused it because all his tests came back ok and he has been fine ever since.  I'm hoping it was just a one time thing just to scare us because that's what he is really good at lately...scaring me!  All of a sudden his blood pressure dropped which hasn't happened for awhile, then the only thing he would respond to was a deep sternum rub.   They finally ended up giving him a medicine called Mannitol which helps relieve pressure in the brain and that's when he woke up.  They then rushed him down for a CT of his brain and when that came back clean they did a Lumbar Puncture so they could check his spinal fluid for meningitis, which came back negative.  I am just so grateful for the wonderful nurse that was on that night.  She recognized that there was a problem and made things happen quickly.  I am so grateful to her and am so grateful for all the nurses out there who take what they do seriously and are good at it. 
Ever since that night things have been looking good for my little bug.  He has been talking more and his speech is getting a little better.  At first he sounded like a little mouse and it took him a long time to be able to get a sentence out.  But that has improved.  He has been wanting to sit up and get out of bed.  He has been trying to color and paint and do things other than just lay in bed and watch T.V.  He has been doing better with his physical therapy and even smiled and laughed for the first time when they were working his legs.  That was so wonderful to see!  I'm slowly getting my little Skyler back and its amazing.  There was a while there where they told me he wasn't going to make it and I didn't know if I would ever be able to see him awake again let alone smile and talk and give me hugs.  I will never take for granted the little things ever again!
Skyler also has peed three times....yay!  I never thought I would ever be so happy about pee, but it means his kidneys are starting to get with the program, which means less time on the dialysis machine.  Today he was only on it for three hours. 
They have also been going down on his sedation and IV pain meds.  He is completely off the Precedex (for sedation) Versed (sedation and anxiety) and Fentanyl (pain)  They now have him on oral Ativan, Methadone, and Morphine.  This is good because to be able to  go back up to the Oncology floor they want him to be off the IV meds and on the oral ones.  He has been having withdrawls though which make him shake and sweat and throw up.  Its awful to watch but its getting alot better.  He is getting alot better.
One thing that has been hard for me to see is that he is getting really emotional.  He gets really sad and scared and worried.  He is now afraid of alot more things.  His Grandma Kathy came and gave him a Halloween singing card and he didn't want her to even open it because the front of it had a skeleton on it and it really scared him.  Poor little guy.  He has been very good at expressing his feelings though and letting us know when he is scared or worried.  I'm so glad he is doing that because I have been to talk to him about it and it seems to make him feel better after talking it through.  It kind of makes me wonder what he was dreaming about when he was completely sedated though because today he started crying and said he missed daddy.  He hasn't said anything like that for awhile so I kind of wonder if he was just catching up with daddy for the six weeks he was out of it.  This is a different kind of exhaustion that has been hitting me lately.  When he was intubated and sedated I couldn't leave him or sleep because I was afraid of anything happening to him, and now that he is awake I'm afraid to leave or go to sleep because he needs his mommy to be by him and make him feel better.  It scares me to not be right next to him when he is awake because something might happen again where that could be the last time when I see him awake.  I hate the fact that I'm constantly scared but Ive come to learn that that's just what this cancer journey brings.  You never know what will happen, so I have learned to live in the moment and enjoy and celebrate the moments that I do have.








I just took this picture of Skyler smiling.  My heart is full!


17 comments:

Briana said...

oh my goodness - those pictures of skyler coloring made me cry. good tears though! what a beautiful sight. i am so happy to hear all of these great updates. it truly is a miracle! hooray!

JACK's house said...

Crystal I am so glad things are going well...Skyler looks adorable!

Ashley said...

Amazing! just amazing. the girls pray for him every time they pray. What an amazing family you are! Love you guys!

Anonymous said...

Keep up the good work Super Skler!!!

Ruth said...

so glad to hear this good news... Skyler has the sweetest smile!! Praying hard for him and for you Crystal.

Much love,
Ruth

Anonymous said...

Wow such progress! I love that little smile! It is so so so cute! :) Keep staying strong and brave little man! Still praying for you guys!

Rick, Jayne & Riley said...

HI Crystal... You don't know me, I came across your blog through another friend. I live in the Foxboro area and I don't know if you remember but you came to my ward one Sunday when you moved into the apartments. I am the one that took yours and Skyler's picture after the new member meeting. I never saw you again and I have thought about you a lot since. I am sitting here in shock with tears streaming down my face. I can't imagine the hardships you have had to face! You are a strong woman!! Please know that I am praying for your son! Your a good Mom and you will be blessed for the trails you have had to endure. Hang in there!

Anonymous said...

Crystal,
you've never met me,but another cancer mom posted your benefit concert for this november onto facebook. My son's name is Skyler too. He was diagnosed may of 07 and after 3 years and 4 months, he's done now. This is a long journey that has a lot of ups and downs. But in the midst of it, there are a lot of miracles and blessings I saw that strengthened me in ways I never thought possible.
We live in utah too. Our oncologist is Dr Barnett. We have come to love all the Doctors in the clinic. They kind of have become like family to us.
We are praying for you both...
my email is angelheartctr@yahoo.com...if you ever want to talk.

Take care!

Lindsey Hill said...

Wow! That picture of him smiling is so precious!!!!! Way to go Skyler!!!!

lindsay Roscoe said...

He's coloring and smiling!!! My day is offically made! Thank you for sharing your very emotional journey with all of us. Our prayers will continue!

Misty Jo said...

I love the picture of him smiling! He is such an adorable little guy!

johnjillhuz said...

Crystal, thanks for telling me about you seeing our little Erin running the halls of ICS. Running the halls with her silly costumes and hats always kept us going. It is so hard being confined to a hospital room! You are truly a wonderful person. You must have the most deep understanding of the purpose of life. I just find your posts very inspiring and I love all of the pictures - especially Skyler smiling! I hope that someday we'll meet. We hope to be back there soon! Good luck beautiful lady!

Beth.. One Blessed Nana said...

oh, wow. my heart is smiling too just seeing the light in that baby's eyes! Praise God for the miracle of Skyler and thank you Jesus for what You are doing in his life!

Tammy Stasiuk said...

I found your blog, and have been following it daily. I am really amazed at your unbelievable strength and Skylar's courage. You are truly blessed by our Heavenly Father for all that you and your family are enduring. So glad that things are improving. Loooking forward to continued good news. Our daily prayers are with you and Skylar.

Dani said...

I LOVE LOVE LOVE these pictures! He looks amazing!

Amanda said...

HE'S COLORING! Wow Crystal, this boy of yours in really someone special. He amazes me.

Thank you so much for letting us be a part of your life and your journey. You are two of the most outstanding people I know. :)

Devin said...

With all the bad things going on in the world, it is this picture that makes me believe that life is worth fighting for and and our heavenly father give us a little piece of what heaven feels like. Congrats Crystal and Skyler!!!! I feel like jumping up and down!!!! "HE DID IT, HE DID IT, HE DID IT HE DID IT, HE DID IT HE DID IT!!!!!!!!!!