Saturday, January 1, 2011

Notice anything different?


No oxygen! Sky has gone two days completely off oxygen (except for a couple hours at night when he was in a deep sleep)  It has been so great.  I still cant believe it because he has been on so much respiratory support since we have been here.  I think the part I love about it the most is that he is starting to look like himself again.  Well a balder version of himself. 
Another great thing that has happened is that he went 24 hours without a fever the other day and then yesterday he just had one low grade fever.  Yay!  It really is incredible because he has gone the last 4 months straight spiking at least up to 104 degrees F everyday and sometimes up to 105.  At first I just thought it was a fluke but he hasnt spiked at all today either.  Wow.  It really is hard for me to believe that he is starting to get better.  It seems that every time something gets a little better, we get slammed with something else.  So Im very cautious.  They are however, throwing around the "H" word (home)   I just cant believe that it may be getting to that point.  Everything he is on right now we can do from home, the only thing that has been keeping us here now are his fevers and his platelets.  But he has been going almost a couple days now in between transfusions, so we could come in every couple of days to get those.  All these things that are happening are just so amazing, but in the back of my mind I dont believe it.  I guess Im just waiting for that something that is going to slam us again.  It would be great to be home though.  I am getting soooo sick of this place!  I feel like everyone that comes in is bringing in nasty germs from other kids. I seriously want to either spray everyone down with Lysol when they come in or have them where bio hazard suits or something.  I would feel much better if we were in the comfort of our own home and I could control who comes in.
On Tuesday he is scheduled for a bone marrow aspirate to check for any cancer cells, and also a lumbar puncture so they can administer chemo into his spine.  And then depending on if his bili is low enough, they are going to consider starting a new chemo drug.  This is one that he should be on but hasnt been able to because of his liver.  But if his counts are in the normal range then they will probably give it to him and we will just have to cross our fingers and pray that it doesnt damage the liver.  It seems that most of these drugs are harmful to the liver.  Not a good thing when at one point his was almost shot.  At least now he can start getting the drugs that will keep the cancer away better, and that is the nasty thing that has caused all these problems in the first place. 

8 comments:

Anonymous said...

What amazing news for 2011!!! Skyler is beyond adorable and such a fighter. You guys are always in our thoughts and prayers. Thanks again for taking the time to provide us with updates. It is just so great to hear this good news :)

lea said...

YAY!!! Im so excited. I bet its sooo nice to see his super cute face! Im so happy for you, and as always...you are BOTH in our prayers! What a great way to start out 2011!

lindsay Roscoe said...

WOW!! It is tryly amazing! I would love to help get together people to sterilize your home when it is time to go home. When Millie went home we had a group of 23 people that came together 2 days before Christmas on 4 hours notice and had that entire house sterilized including all the soles of every shoe in that house, new furnace filters everything. People were amazing! I would love to help make your home safe. I am serious. call or email 801-205-4525
loubusp@hotmail.com

Dani said...

I am so glad Sky is doing so well. Even though it is scary to go home and takes some getting used to, it is totally worth it. I am sure you are so ready! We will keep you guys in our prayers...no fevers, good platelets, and hope all goes well with the new chemo!!! My daughter Abby prays for him every night with Chase in the background repeating her whole prayer so I could say that both my kids are praying for him every night. Did you get to meet Jessica before she was moved to PICU?

johnjillhuz said...

What beautiful news! Thank you for sharing the picture of Skyler. He looks SO SO SO good. He is truly a miracle.

Jodie said...

What a great picture! I am so HAPPY for you! How wonderful for you if you get to go home! I will continue to pray for you and Skyler. Better days are on their way! He is the toughest little boy I have ever seen!

Amanda said...

That is the most beautiful picture I have seen of Skyler. He is stunning. Lindsay already wrote saying she would love to help clean and she means it! My family is hard workers and GREAT cleaners. It was a HUGE blessing to me when I came home to a perfectly clean home. We would LOVE to help you when the time comes. They even bleached the bottom of every pair of shoes in our home.

HAPPY NEW YEAR! It's going to be a good one!

Lacy Allred said...

that is such a precious picture! i hope 2011 will bring much more great news!