Tuesday, January 4, 2011

 This morning Skyler was scheduled for a lumbar puncture to put chemo in his spine and also a bone marrow aspirate.  I told him that he was going to get the sleepy medicine again and he started crying.  This was kinda weird because back when he was so sick he would beg for the sleepy medicine because he didnt want to feel the ouchies, so this was the first time he was really scared for it.  However, he was excited for the wheelchair ride down there because we actually got to leave the unit.  He was so excited and smiling the whole time.  He was a little scared when we got into the room and he saw the bed that he had to lay on, but I put him on my lap when they gave him the sleepy medicine and he was out before he knew it.  The procedure was really fast and when the came back to get me he was already awake.  He woke up so happy and looked up to me smiling and said "That wasnt so bad mom, this is my best part"  It was so cute.  The cuteness ended though when we got back up to the room.  The effects of the anesthesia kicked in and he turned into a crazy person.  He was screaming at the top of his lungs and hitting and kicking me.  It was so weird, I have never seen him like that and he has never responded that way to the anesthesia before.  The nurse said it was pretty normal though.  He took a couple of naps and when he woke up he was great.  More than great actually, he was so cute and so funny, he was totally back to his normal self.  He wanted to get in his jammies and sit on his little chair and show us cool tricks with his legs.  I was so amazed.  I havent seen him move like that since he got diagnosed.  We have had such a wonderful night.  Right now we are having a movie night and he is loving watching movies with mommy.  I love this!!  I love him!!


It seems we are getting closer and closer to going home.  If things keep going good like this we may be able to go home by the end of the week.  Holy cow I cant believe that we might really be getting out of here!  It will be weird to be back in a house with no staff though.  But it will be good weird and Im really excited about it.  It is going to be so good for Skyler's mental state too.  I cant wait to see his face when we go outside for the first time and he gets to see our new place and grandma and grandpa's.  I just want him to be happy and I know being home will make him happy.
They have been teaching me how to take care of all his needs at home.  Today I gave him all of his meds through his feeding tube, changed his central dressing, changed the claves on his catheter and put heparin in both lumens.  Its kinda scary stuff because if I mess up it could make Skyler really sick but I love learning how to do all these things.  Im kinda excited to be able to to take care of Skyler all by myself at home.  Ill actually feel like a real mom again. 
 Here is the dummy I practiced changing the central dressing on before I changed Skyler's.  His is actually alot different than this one but it was good to practice doing it sterile on a fake person before doing it on Sky.



Doesnt he look so good?


On a side note:  I want to keep Skyler as healthy as possible so Im not allowing any visitors for awhile.  Thank you so much for keeping Skyler in your prayers, I am so grateful to all of you!

16 comments:

suzie said...

Crystal, I have been following skyler's blog since beigining of october. And I just want to say to u....thank you thank you from the bottom of my heart for letting me get to "know" your perfect little sweet Skyler! He has impacted soooo many...all ages too. My little 3 and 5 yr old ask daily "mommy how is skyler today?".......he has that sort of affect on everyone. He ( and yourself) are most definately A-M-A-Z-I-N-G people!! It just blows my mind at the people u guys r and were in the pre-existance....WOW! I know this does NOT make anything better....but our Heavenly Father must have such immense trust in u and ur skyler b.c of the phenominal ppl u r to go through what u both are....u both are so unbelievably strong!! I live in Az and w/out fail when the 2 wks is up, I put u and skyler's name on the temple prayer roll.
But, what I mainly wanted to say, is that I felt soooo strongly to tell you that I could Not AGREE AGREE AGREE AGREE more with you about not having visitors. My mom battled cancer for 2 years and we limited visitors completely....u almost have to...not worth the risk for ur whole life (skyler) getting anything. You are such a great mother! My admiration for the both of u is beyond words! Thank you for blessing mine and my munchkins life with such a perfect example of love from a mother to her son and the example of perfection in ur little Super Skyler!!!

*Suzie

Anonymous said...

His face says it all PURE JOY! Thank you for letting us be a part of your journey, you are such an inspiration, I honestly don't know how you do it, you are both amazing!

Michelle and Sean said...

Crystal I totally remember doing all of that stuff for Maggie getting ready to take her home. It is scary to think that if you mess up it could be devastating. But I know you can do it. I did it so I know you can!

Skyler does look good! And I agree no visitors! We are doing the same thing right now because Maggie is just so sick one more thing could just push her over the edge. Anyway I am so excited that you guys might be home by this weekend. I pray so hard that you both can just catch a break somewhere. He is a little miracle.

Please let me know if there is anything that I can do for you at all!!

Cristina said...

So so very happy for your sweet Sky!!!!! He looks great! Will keep those prayers coming! You are simply amazing! So so happy for you, Crystal!!! Going home will feel like heaven!

tenacious d said...

Holy cow! He looks fantastic! Love it!

Chelsea said...

I LOVE the last few posts! Sky is doing so well and I cant believe you guys might be going home at the end of the week! WOW! That is SO SO SO amazing! What a strong little man you have! Love you both! XOXOX

johnjillhuz said...

Crystal, I am so happy for you. My heart is so full of joy! The picture of Skyler is AWESOME. WOW! He looks SO SO SO good.

You will be THE BEST nurse he has had yet. You love him and care more about him than anyone else on this earth.

I remember practicing on the dummy chest. We called it "Chestor". Ha ha.

I agree on the "no visitor" thing. It may be helpful to have a note on the front door of your house too. I remember some people ringing my doorbell over and over and I never opened the door. I know they mean well, but having a child with a compromised immune system is nothing to take lightly. :)

Brady said...

Millie almost always wakes up as the Hulk after a lumbar puncture. She'll yell and scream all kinds of mean stuff and try to pull her tubes out. It's always sad when she calms down because she seems to feel guilty for the way she had acted, but we always tell her it's not her fault.

I check your blog every morning and it makes me so happy to see him doing better every day. We love you guys and are praying for you.

lea said...

Whenever McKall gets "sleepy medicine" we always wonder which kid we'll get when she wakes up. Its like Dr Jeckyll and Mr Hyde! Shes usually so much better after a nap tho too! Im in tears over the progress hes made over the last couple weeks. Im so happy for you and for him, and I hope your home by theend of the week too! You are a "real mom" of the best kind and i dont blame you for wanting to keep him away from people. A LOT of sickness going around right now! Continuing to pray for you...

Amanda said...

I was going to tell you about Millie waking up as a crazy lady, but it looks like Brady beat me to it. Skyler looks so good. I want to squeeze him! Millie came home with a Picc Line at 1st and I remember practicing her dressing change on a dummie. It's was so scary the 1st time I actually did it on her, but I was just so grateful to be home that it didn't matter. I know you'll be great at taking care of Sky and it will be so nice to be HOME! We always pray for you and Sky. GIANT HUGS!

Lindsey Hill said...

HOLY SMOKES~!!!!!!! HE looks AMAZING!!!! I cant believe the differance just a few weeks have made!!! Love you guys!!!! I am so happy that you guys get to go home so soon!!!

Erin said...

Crystal and Skyler, while being away for the holidays, I thought of you both so often, wondering how Skyler was doing. I'm so overjoyed to come home to this wonderful news.

Skyler, you look fantastic!! Big hugs and prayers from Canada.

Erin & Nolan (5, preB ALL)

lindsay Roscoe said...

Look at that big dimple he has! He is such a beautiful boy! I can't wait for him to get a whiff of fresh air. It will be wonderful for you both. Our prayers will continue. So COOL!!!

Ric and Meagan said...

I have been following your page for some time now. I am so happpy for you guys. I will continue to pray for the strength and wealth to keep coming your way. He is so darn cute!!!! You inspire me. Thank you so much for sharing your story with us.

Amy Jaten said...

He looks so wonderful Crystal! We just love him.

One Heart said...

Checking in on you guys and glad to see this gorgeous picture. Much love and prayers still going your way. Blessings.