These past couple of days we have just been kinda hangin out. There havent been any real big changes. Although last week they told us that one of the infections he had called CMV wasn't active so they stopped his antiviral medication, but last night they came in and told me that there was some sort of mix up in the lab and it actually is active. That was a bummer to hear because he has lost out on days that he could have been on the medicine. However they started it again last night and hopefully will do its job soon and get rid of this infection. He is still having high fevers through out the day and his blood pressure will drop a couple times through out the day also, so they are going to take him in Monday for another CT of his brain, sinuses, chest and abdomen to check and see if there is anything that they are missing or if the fungus has grown in other parts. So please pray that there isnt anything bad that shows up on that. I just dont know how I would handle another thing thrown at us.
On the bright side though Skyler has been a little more awake and aware of things lately. Last night and this morning he heard me talking to him so he opened his eyes wide open and looked at me while I talked! It was amazing! He kept them open for at least 10 seconds. He was so hard not to burst out in tears but I didn't want him to see me do that so I kept a big smile on my face. (That was a toughy) He also has been bringing his hands up and itching himself. That is such a big deal for him because he is sooo weak. Also up on the fourth floor when he first got sick his only real comfort was to put his hands up to his mouth and he hasn't been able to do that since being down here because of the bi pap he was on and then being intubated and so sedated, but he has been doing that lately. He will just lay there with his fingers all the way in his mouth. Its actually really cute. It has the nurses so worried that he is going to pull out his tube though. It's funny watching them be so nervous about it when I know that that is just not going to happen. Besides he is really good about leaving all the tubes and stuff alone if he knows that it has a purpose. I love you sweetheart, keep up the good work!
Here are the nurses turning him to his other side. They have to do that every two hours so he doesn't get any new bed sores.
This is a pic of the board that has info about labs and such. I think its so cute that they did it Super Skyler style!
And here is a shirt that I have been sporting around the hospital lately. Very stylish I must say :)
This is a pic of the nurse about to administer the medicine that they just started him back on for the CMV. They have to gown up like they do when they give chemo.
13 comments:
Ok-I told you I check your blog all the time! I LOVE your "Super Sky" shirt..it is awesome! We are praying hard here for a clean CT scan. Love you both! XOXOX
So happy to hear that he opened his eyes for that long! It is the little things that make a HUGE difference! I will be up at PCMC on Tues because my daughter has a CT scan that day. I would love to bring you lunch if you would like, ( I know that sounds wierd since you don't know me. I would love to do something for you though) Email me if you want me to
camisaari@msn.com.
We are praying really hard for you guys. Stay Strong Skyler! Fight HARD! My whole family loves you both and prays for both.
Crystal: I agree with Julia you are amazing! It's also amazing how many people are pulling for the 2 of you! Thanks for the update. I look forward to hearing the results of the ctscan.
Love you! Denise
I love the SUPER SKYLER T-Shirt! So cute! You are both so amazing, hang in there~ we will pray for a clean scan(s)! Good Luck! Keep everyone posted!
Still praying SOOO hard for you guys. Little skyler is such a fighter. We will be praying for clean scans. I can't imagine how you felt seeing his eyes! You are so strong to be tuff for him and hold back the tears. What an AWESOME mom you are! Again, he is so lucky to have you there fighting with him!
It was so good to finally meet you on saturday! I look up to you in SO many ways and I think you are the best mother and person I have ever met in my life. I admire your strength so much. We are praying for you guys constantly and read your blog every single day! Keep us updated on the CT scan and I hope to see you again soon! XOXO
We will be praying as hard as possible for a clean CT scan tomorrow. GOOD LUCK! We love you guys.
Your SUPER SKYLER shirt is awesome and so are your nurses!
So glad that Skyler is a little better!
I have his prayer button on my blog, but wanted you to be able to put it on yours so others can get it off of yours for theirs?
Did you get my email with the attachement for it? If not, let me know OK?
Beth
We also check your blog constantly for updates! :)
We've been praying so hard for you guys each night and will continue to - now for clear scans!
You are such a strong mommy - that story of him looking into your eyes was so sweet. Oh - lots of love and prayers to you guys!
Continued prayers for you both!! I pray that you both can continue on strong!! Please let me know if there is anything at all that you need!
I do have some things for Skyler. Let me know if there is someone I can drop them off to or if you would rather I hold on to them for a little longer. I totally understand that things are so stressful and each day is a new roller coaster with different twists and turns. So I can wait and hang on to them for as long as you need me to.
We are thinking of you both everyday and pray for a miracle!
I heard through the grape vine that Skyler opened his eyes to watch cartoons and put his arm around his mama?!? I bet you don't even have a second to write, too busy soaking up every second of him. Praying for many more cartoons to keep eys open.
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