Tuesday, December 21, 2010

The Oncologist came in today and said "Can I talk to you outside for a minute?"  My heart sank.  When a doctor pulls you out of the room to talk you know its not good, I have had too many of those talks, but to my surprise it was a good talk.  She said she was thinking about Skyler and wanted to get him home for Christmas.  My reply was "What?! Are you kidding me? Home?! You cant be serious."  Haha you should have seen the look on my face.  She was actually very serious and really wanted to find a way to get Sky home for Christmas.  She said she could wait on his chemo this week and do it next week, we could come in once a day and get a platelet and blood transfusion, and she could send an oxygen tank home with us.  A million and a half things were going through my head when she was saying all this.  Will I have time to sanitize the whole house?  Will I be able to handle all his needs from home?  Would he get a new infection being home?  How will a wheelchair fit into the car or our house? Can I really leave the safety of the hospital setting and risk getting sicker and ending up in the PICU again?  Even the thought of going home right now scares me to death, so as much as I would have liked a Christmas at home I decided to stay here.  We would have had to get admitted again after Christmas anyway.  I know some of you are thinking "How could you pass this up?"  but I just couldnt risk it.  I need him to get stronger first and to not be dependant on oxygen.  I also couldnt stand the idea of holding off on his chemo for another week when we have gone so long without it.  I will sacrifice ANYTHING to get Skyler healthy again, even if that means spending the next couple of years in the hospital if it comes to that.  We will just have to make Christmas in the hospital as fun as Christmas at home.  Im just glad that we get to have a Christmas together.  Some people thought that he wouldnt even be here for Christmas, so to be able to spend it with him up on ICS is a miracle.  Im really grateful for the doctor for thinking of Skyler and having her willing to do all these things so he could be home though.  That was very sweet of her.

Overall Skyler is still improving.  Improving slowly, but still improving.  The levels that show how his kidneys are working are coming down.  This is so great and it has shocked the doctors.  They were expecting him to be dependant on dialysis for the rest of his life, but here he is going on a week now off dialysis and doing great.  Today he is a little more puffy and his weight has gone up a little, so they are going to slow down on the weening process of his diuretics that are helping him pee.  And hopefully since his numbers are going down his kidneys will start to work better and he wont have to be on diuretics at all.

His bili is still going down too.  This is a reflection of his liver function so Im so grateful that it is going down.  He is still yellow but not nearly as bad as he was.  They have to hold off on one of the chemo drugs that he is supposed to be getting because his bili is still too high, but hopefully it will keep going down so they can eventually give it to him.  It scares me that he isnt getting the chemo that he would normally get.  I would just hate to get all of his other problems better and then have his cancer come back.  That would be truly devastating.

They are taking his central line out that is behind his knee today.  Hooray!!  That means the only access he has left is his dialysis catheter, and since they can use that for all his meds they dont need the other line anymore.  So one less infection risk gone!  At one point he had 17 tubes going in him at once and now he will just have one (well he will still have his feeding tube)  this is amazing.  Im just so happy things are starting to look up.  I love this feeling of hope.  I love that I can actually picture him having a future and it may actually be possible now.  All odds were against him but yet he made it this far.  What a fighter he is! 

Skyler spirits are starting to coming up.  He seems to be happier and he is back to his cute, funny little self again.  Im loving seeing personality shine through.  Today we played catch with a beach ball for 45 min.  He was laughing and smiling the whole time.  It was pretty cool.  Its little moments like these that will be etched into my mind forever. 


         Hooray for no more of these dressing changings behind his knee!!  He hates getting this one cleaned.


18 comments:

Heather said...

I totally don't blame you for choosing to stay at the hospital. I love that he's doing so much better, and I want you to know you are in our prayers and thoughts daily. Keep it up Skyler!

dailydaph said...

Oh my goodness! That is so thoughtful of the doc. Really. But I totally agree with you. I have the same philosophy. One little Christmas away from home so he can have 70 more? Like there's even a question. Daph had to stay in the house for Halloween and we did what we could to make it fun. Her stuffed animals dressed up and we knocked on all the doors in the house. There are things you can do. And please, of course Santa knows how to maneuver a hospital. And Sky's been much more than just a "good boy" this year. I can't even begin to comprehend his patience in all this. Yours too.

I'm so glad that it was even in the realm of possible for the doc to suggest he could be home for Christmas, but it will be all the sweeter when he gets there when he's even stronger.

Merry Christmas sweet family!

Michelle and Sean said...

I would've done the same thing. Who knows whats out there that he would catch.

Its not fun being in the hospital for Christmas but I'm sure it will all be worth it.

We will be up there tomorrow!! Hopefully we can drop this stuff off to him. I can't believe we have had it for so long!


Continued prayers for you guys!!

Cyndy said...

Such great news!
Always in our prayers!

-Amy- said...

I have been following Skylers story from the begining and I cant tell you how my heart breaks for you and all you and Skyler have been through!! I am so glad to hear things are starting to look up for super Skyler!! You are truley an inspiration and I check your blog daily to see how he is! My thoughts and prayers are with you everyday! Hope you all have a very Merry Christmas!! Amy from Utah

JACK's house said...

Merry Christmas Crystal! You are an amazing mom! Skyler...your lucky to have such a good momma!

Kristin said...

Hope is a beautiful thing. So glad you are in a place where it is shining bright. (((((hugs)))))

Jami N. said...

Crystal! He is looking great! I'm so excited that he is doing better. Give him a high five from his nurse Jami! I hope you two have a very merry Christmas...even if it is from a hospital room. :-)

Lindsey Hill said...

All I can say is Miracles truly do happen!!!!

Misty Jo said...

I'm so glad that he is doing better:) I don't blame you at all for staying in the hospital. It would scare me too with how sick he has been. I hope you both have a wonderful Christmas!

Anonymous said...

You are a very smart mommy!! Good decision to stay there and get the little angel better. My heart is so very happy with the news that he is getting stronger each day. May God continue to bless you and your beautiful boy.

zachs mom

Padilla's said...

I completely agree with your choice to stay there. I am sure it was hard but keeping him healthy in the long run is what really matters. Christmas happens where family is. I am so happy Skyler is doing better. He truly is a miracle and so strong. Keep it up you guys!
Rachel from AZ

lindsay Roscoe said...

As I was looking at your blog ,Jager, he is 5, and asks and prayers for Skyler daily, shouts is that Skyler? He was so excited and happy to see him looking so good. Then I started to tear up as I told him Skyler is doing so much better that the dr's were even thinking about letting go home just for Christmas. What a great Christmas it is to have HOPE and the HOPE that those sweet little eyes will enjoy life and many more Christmas's. What a great gift! HE is a FIGHTER!! Meryy Christmas!!

Amanda said...

WOW! He is amazing! So are you! I am with you on staying in the hospital. If I were mom I think I'd be way too stressed to even enjoy Christmas at home. I wish we could come visit, we have a little something for him but we are still a little sick. Our gift will just have to wait till we are 100% healthy. I hope you both have a wonderful Christmas! We'll be thinking of you.

Briana said...

That is amazing!! I BET you were totally blown away by that news. How nice to get such happy news - and how sweet of the doctor to try and get you guys out for Christmas. But, I totally agree with your decision as well. I would be scared out of my wits to be at home all by myself and constantly worrying about every little thing. :) I remember feeling totally overwhelmed with the medicine, the things to watch for etc. when they were discharging Elena after her diagnosis and she wasn't even 1/20th as sick as Skyler! I can imagine that you'd be nervous! I hope you guys have a very, merry Christmas!! We also are trying to get up to see you, but still have little bits of colds - we're just trying to get all of us all better at the same time. :)

johnjillhuz said...

So many blessings. So thoughtful of the doctor. Such wonderful news about the central line coming out and his kidneys starting to function. Crystal, you are such an amazing example to me. Thank you so much for sharing all your emotions through this blog.

Brooke said...

You don't know me, I'm a friend of Todd's from work, but I've been reading your blog for the past few weeks. I think you and Skylar are amazing, I am so glad to hear that he is improving. You are both in my prayers, I can't imagine what this must be like for the both of you, but I want you to know you inspire me to be a better mother, and not take the little things for granted. When I'm up with my 1 year old at night, feeling exhausted, I think of you and saying what a blessing it was for you to be able to hold your little man. Because of you I try to slow down and enjoy ALL of the moments with my daughter. Thank you for your example. I hope you have a wonderful Christmas!

Kirsten said...

I just started reading your blog last week, what a crazy(?) couple years you have had. My heart goes out to you with every post I read. Kudos to the oncologist for pulling you out of the room to ask, although I'm sure your heart dropped a bit. It may have pained you to make the decision to stay in the hospital but I'll agree that you are making the BEST decision in the long run. No use taking unnecessary chances when I'm sure you will make it just as special even though you will be in a hospital setting. Hugs from Maine, may God grant you and Skyler an abundance of strength to beat this battle with years of happiness and smiles to come!