Thursday, November 4, 2010

After 7 weeks in Intensive Care we have finally made it back up to the 4th floor.  For awhile there I didn't think this day would ever come.  And after talking to one of the nurses last  night I found out that no one thought we would make it back up here.  I guess when you finally are starting to get better that's when the real truth comes out.  The nurse told me that kids that have what Skyler had and are as sick as him dont usually get better.  Most never get their breathing tubes out.  They are calling him their miracle child because no one thought he would pull through this.  But here we are and I am so proud of him, he is such a fighter!
We have been up in our new room now for about fours hours and to tell you the truth I am having some sort of PICU with drawls or something.  Its such a different world up here.  First of all its soooo quiet.  I'm used to at least a nurse being in the room with him at all times, watching the doctors and nurses running around to different rooms, kids being life flighted in and being wheeled to and from surgery, kids crying, parents crying, code blues being called over the intercom, and alarms always going off.  Up here its so quiet.  A nurse doesn't come in unless she has to give a med or unless I push the call light,  and no one is going to watch him while he sleeps. I'm pretty much scared to death up here, but being up here means he is getting better and that's great so I have to suck it up and put a smile on my face.
Skyler actually is doing so much better.  It seems everyday he is getting stronger.  He even did a little dance for me today when I sat him up (probably one of the funniest things I have seen in a long time)  We have discovered a wonderful new thing called Music Therapy where they come in and sing to him when he has to have a procedure done or change the dressing on his bum wound.  It helps him calm down so they dont have to drug him up to do these things.  Its great and Skyler responds so well to it.
Tomorrow they are going to do a bone marrow aspiration to see where he is at with the Leukemia, figure out what is happening to all his platelets (he has to get a platelet transfusion everyday because they keep dropping so low) and to see where they need to go with his chemo.  Because he had gotten so sick, they had to go off the normal road map they would use for his chemo treatments and kind of make up a new one for him.  I think now they are wanting to get him back on a normal chemo plan so we will see what they have to say about it this week.  For awhile there I kind of forgot he even had cancer because they were treating other things that were more life threatening.  Now that we are back on the floor with other little cute bald kids and talking about chemo, its all coming back to me and I'm starting to remember that we still have three and a half years of this crazy cancer journey.
 
                    Here is Sky in his wheelchair with the Music Therapy girls


Here is Skyler and Grandpa just chillin while I'm getting everything ready to go up to the floor

Ty and Sky in the new room waiting to shoot the nurses as they walk in....they ended up shooting me instead

18 comments:

Michelle and Sean said...

Yay!! I'm so happy he is moving to the 4th floor!!

He is a miracle!! We continue to pray for you both!!

Nikki said...

I was so happy to read this Crystal!! You both are so strong! :D

Janica and Dan said...

That is such good news!! Keep up the good work Skyler!!

Jami N. said...

I found your blog! I hope that is ok...I have been going crazy wondering how Skyler is since I haven't taken care of him for over a week. Love that little man!

I have to say that he truly is a miracle. I was one of those who didn't know if he would make it out of the ICU. This is an amazing step in the right direction! I know how different the floors are...hang in there and ICS will become home again quickly.

I will have to come say hi the next time I work. ;-)

nsudburyfam said...

I'm so happy for you both, and for your family. Even though no one wants to be at the hospital at all, I'm sure the 4th floor is much more appealing than the PICU.

We were in the PICU also (not nearly as long as you guys), then moved up to the 4th floor. The silence is hard. I especially remember that I would watch her stats, take her temp, and even run the blood pressure machine all the time in between nurse visits because it was so strange to not have someone doing that. It will get easier to relax as time goes on.

I hope they find NO LEUKEMIA when they do the bone marrow and that you guys can get a plan started and make the next step toward going home soon!! You are in my thoughts always.

Congratulations on the good news and best wishes on the bone marrow and next steps!

Amy said...

I'm so glad to see him improving more everyday!:) My Skyler said a prayer for him the last few days(since we found out)...and I know all the prayers are being heard and answered.
Enjoy the 4th floor...and don't worry, those nurses are always right outside the door when you need them...and they love those kids up there:)

Amanda said...

AMAZING! I have a funny Music Therapy story, but I will send you a private message. :)

Anonymous said...

Wow this is such great news! This even brought me to tears! I am so glad to hear that things are going better now! :) Keep it up!

-Natalie

The Trenery's said...

I saw your blog through Cami's blog and I hope it's okay but I have been following Skyler's story. I know you don't know me but I live in Bear Lake and I have 4 kids of my own and I have fallen in love with your little guy. I can't imagine how hard this all is for you but I can tell that you are an AMAZING mom! My family prays for Skyler every night even though we don't know him. He is such a beautiful little boy and I am so happy that he is getting better! Thanks for sharing your story! Terra Trenery

Chelsea said...

Way to go little buddy! He is AMAZING! I have chills seeing him free of all those tubes and back up in that room! I am so happy for you both! Cami has chemo next Thursday so we will come visit! Sending all my love! XOXOXO

Michelle Nicol said...

That is so awesome. I know miracles do happen. I'm so happy for the both of you. You are an example to me for how strong you are. It keeps me going day by day to be strong like you no matter what happens in life.
Michelle

Anonymous said...

He looks so completely amazing compared to what he looked like just last week! You said that he woke up crying for Daddy...maybe he was there in his dreams rooting him on to get stronger! That is a happy thought! Yay for moving out of the ICU! I remember when my daughter came out the NICU, it was crazy stressful, but you get use to it :) xoxo

Anonymous said...

Yay!!! Go Sky! He looks great. God is Good!!

Cyndy said...

Go Skyler! You are an amazing mother!

Ruth said...

so gld to hear this good news!!Praise God!!

Miss Szymanski said...

I heard about Skyler from my blogging friend, Ruth... I just wanted you all to know that I'm praying for Skyler (and family). I'm so glad to hear that he's improving! God bless!

Cami said...

So happy for the both of you!!!! Moving to a normal floor is a little unsettling, but before you know it, you will be loving the silence! Go Skyler! Go Mom!

Dani said...

He looks amazing! I love to see him in his super jamies! He is your little miracle. He has so many people praying and fighting for him and his mommy! I am so glad he is surprising the doctors and nurses and showing them what a fighter can do. Let us know if his counts get good enough, we would love to come say hi next week!!!