Saturday, January 8, 2011

We are home!!  Its wonderful, exciting, amazing, and terrifying all at the same time.  Im going to keep this post short today because I am thoroughly exhausted, but I wanted to let everyone know that we did it.  Skyler is home and loving it!!!  It really does seem surreal.  On the ride home I kept looking in the rear view mirror and smiling because he was actually in the car with me.  It was perfect. 


Right after we got home and got Skyler settled, our home health nurse came and reality set it.  She brought with her about a million and a half boxes of supplies.  We jumped right in and she taught me how to use everything.  This is how my day and night went:


Administering Chemo, hanging his IV anti fungal and giving it through his central line, starting his feeds on his new pump, getting his new wound vac and having to change the dressing at two in the morning, giving all his MANY medications through his feeding tube, cleaning up throw up and changing all bedding in the middle of the night, turning him on his sides every two hours, racing to catch the barf bucket multiple times, changing 4 huge diarrheas along with changing all bedding again, and trying to keep him entertained and happy.  I have been constantly on the go.  My body and brain hurt like crazy, but its all completely 100 % worth it!!!!


                                                        SO ready and excited to go home


Saying goodbye to all our nurses



We got to ring the bell.  Normally its for when you are done with treatment, but they wanted us to because we had been there for so long


Saying goodbye to one of our favorite PICU nurse practitioners


Skyler's first breath of fresh air in over 4 months!


He was so excited to ride in the car


How cute is he?


WELCOME HOME SKYLER


He was so happy to finally be able to go into the house


It was my mom's birthday so we did cake.  My dad put candles on top of the cake box so she wouldnt blow on the cake...thanks dad


He loves birthdays and was happy to see the cake


Giving chemo


Finally able to relax and play his DS


These are just the meds that I give through the feeding tube, I still have to do IV ones and dressing and wound changes too

26 comments:

Misty Jo said...

So EXCITED for you!!!

nsudburyfam said...

That all looks and sounds completely exhausting, but I'm sure it's incredibly exciting too! I am so happy for you.

Please, please, PLEASE let me know if there is anything I can do!! Even a middle of the night shift of catching puke and changing bedsheets! Seriously - laundry or anything to help you get a couple hours of undisturbed sleep - I'd love to help.

Congratulations! What a happy birthday for your mom too! We love you guys!

Marie said...

Wow! Crystal, we are so excited for you! You and Skyler have been through so much. We wanted to say,"Way to go!" So glad that you are home!!!!

JACK's house said...

HOW INCREDIBLY AMAZING! CONGRATULATIONS BOTH CRYSTAL AND SKYLER! (you amaze me crystal...to be able to administer chemo yourself...that would scare the crap out of me!!!! YOUR MY HERO ;)

Rachel said...

I don't know you, but my cousin is Kim McGee and I've been following your story. I am so excited for you and Skyler! What a miracle and a blessing!! We are praying for you both here in California. I am in tears for you both:))) You are an inspiration. Truly.

Alika and Amber said...

I'm sooo crazy happy for the two of you!! He has beat the odds and looks amazing!

Jami N. said...

HOME?? I thought it wasn't happening until Monday. What a great surprise! I have fallen in love with that little boy over the last few months...thanks for letting me take care of him. He is truly a living miracle. Way to go, Skyler!!

myletterstoemily said...

oh, you are an angel and sweet mommy
to an angel. i pray for his swift recovery.

Mindy said...

Crystal!! This so incredibly amazing!!! I am ecstatic for you both! What a great mom you are. :) I'm so happy for you guys and wish the best for you!! Miracles do happen as you have already seen!! WAHOO!!! :)

August said...

This is so awesome! What a happy day and a special gift for you mother's birthday. SO happy for you!!!

Perry's said...

I know you don't know me. but I have been reading all our blogs from the beginning. I have cried in almost all of them. You are such a strong mother. I have two girls and I wish I don't have to go through what you did. I am so glad that you are at home. I have a brother who died when he was 2 from a brain tumor. It is a long road. I am so glad you guys made it. For some reason I think that I know you from somewhere. I went to Bountiful high. I don't know if you did or not.

Lacy Allred said...

what great news! I hope 2011 brings you nothing but good news!

-Lacy.
I stumbled across your blog on 97.1 with Secret Santa and have been thinking about (and rooting for) Skyler ever since!

Team Skyler!

Erin said...

What amazing news and a fantastic birthday present for your mom. Skyler looks so happy to finally be home, and who could blame him. I hope the rest of 2011 continues on this same track for you and Sky.

Erin & Nolan

Nikki said...

WOO0000 HOOOOOOOOOOOOO!!! WOOT-WOOT-WOOT!! I'm so excited for you guys!! I bet it is a huge relief to be able to have him home!!! Congrats!!

Whidbey Woman said...

Wonderful news... there's no place like home!

Dave, Cadance and Family said...

I am so happy that you guys are home!! I have been following your story for a while now and I am so happy that you guys are home!! Sending lots of prayers your way still.. You and Skyler are so amazing!!

Amy Stewart said...

Yahoo!!so glad you guys are home now. Im not that far away if you need ANYTHING! please let me know. Love you guys and am so happy for you both and your family. Im sure they are just as thrilled to have you both home now.

Chelsea said...

How wonderful to see him at home! I love the smile on his face when he is in the car riding home. Love you guys! XOXOXO

Plain Jame said...

Great news Crystal - we are so happy for you and keeping you all in our prayers. I know it's so much work and up and downs, but you are doing great. I love reading your posts, you are an absolute doll. Much love to skyler, I can't help but see so much of Ben in him... What a stud her is, he's our hero. :)

Anonymous said...

I am so happy for you and Skyler-- sorry that it is so much work for you, but how exciting to have him home with you!!!!! I have been following your blog after being introduced to Cami Carver's. You don't know me, but I pray for you both and want you to know how much you and Skyler have strengthened me!! You are both loved and I hope home is good!!!! You can do "Hard Things"!!

lindsay Roscoe said...

wut game are you playing on your ds?
jager

Schmitt Family said...

Crystal, this is Chandra Schmitt, Jessica's mom. I am so happy that you and Skyler were able to go home! You are an amazing family and an amazing example to me and so many others! I hope that I can be even half as strong as you are. Your story and your example are a great strength to me! Thank you so much to you and your grandmother. Jessica absolutely loves her new jammies. What an amazing idea. We have gotten many cute comments from the nurses. And you are loved by so many. There was a big buzz in the PICU when you got to go home. We love you and think of you often! Thank you for everything!
Love,
Chandra

Cami said...

I am so happy for you both! This is by far the best post that I have read on your blog so far:)
There is truly no place like home....especailly after being away from it for so long! You both are amazing....truly!

Travis said...

So glad to hear that he's home!

Bellblogging said...

Best news EVER!!! Way to go SKY! Good luck Crystal, you sound way busy!

shari said...

I have never met you but have been following your blog through most of this amazing journey. You are such an inspiration to so many. I know it has not always been easy for you but you have always been so good at keeping everyone up to date.
I am so happy Skyler has been finally able to come home. My prayers will continue to be with you both.
Much love,
Shari