My mom decided to spend the night with Chance tonight. After dinner, we went back over to the room and they said that he needs to go three hours of breathing on his own until they will take out the ventilator. They started the clock at 7:15 and we had our fingers crossed. Around 10:30 they started getting things together and talking about what they were going to do. Mom and I chose to leave the room while they took it out. The nurse came to get us around 10:50 and said that Chance did wonderfully-what else would you expect? The tube came out without any problems and he said Mommy...

Since he isn't sedated any longer and is off the ventilator, chances are, he'll be awake a lot more. It was best for mom to stay with him so that he knows he isn't alone. We've got some pictures of him without that nasty tube-they'll be up tomorrow morning. Hopefully, all goes well tonight. Since I don't have any pictures of Chance, I'll leave you with a quote that I find fits perfectly with Chance. Throughout his entire life, he has surprised us and done so many things we thought he never could. I definitely know that he won't stop now.

--Dee

Today has got to be one of the most stressful days so far.

We didn't take Chance off of the ventilator last night, he just wasn't ready to breathe on his own yet. This morning, we started trying again and we have been trying ever since. They started weaning him off of the sedation medicine this morning, and completely stopped it at 3:30 pm. He has been breathing on his own (with the ventilator in) since about 4:00 but he keeps stopping breathing. He has to go at least 1 hour of continuous breathing without us telling him to breath and that hasn't happened yet. We are still hopeful that it will happen sometime tonight. He also only has tylenol for pain medicine right now because they can't give any other stuff until the ventilator tube is out.

He was moved to another room earlier today too. That was scary because he was hooked up to portable machines and happened to be awake during this time.

They make us leave at 7:00 am and pm for 1 hour while the staff changes. Tonight, I got back to the house and Deanna had made ham steak, fried/sliced potatoes, and macaroni and cheese. We had a real home cooked meal. It was awesome. When Aaron and Maggie dropped Deanna off today, they also dropped off all of the food that they hadn't eaten this week at the beach. Thanks a bunch for that!!

Hopefully by the next time I post something, Chance will be completely breathing on his own. I'll talk to you later.










Here is a picture of Chance in his new bedroom. Can you tell that he loves the Steelers? You can notice him all decked out on surgery day in Steelers gear as well.

Here are a couple of other pictures. They are what Chance looked like 1 day after surgery. If you don't think you can handle looking them, please don't click on them.

I'm putting the post out early tonight. I want to stay with Chance tonight but we will have to wait and see.

He had a VERY peaceful night and day. They found the right mixture of medicines to keep him comfortable. Things look great and the doctors are still pleased. His face is a bit more swollen than it was yesterday. They think it may swell alittle bit more tomorrow and after that the swelling should start to go down. They told us that his brain cavity is probably already filled with the spinal/cerebral fluid.

We are planning on taking the ventilator out and start the movement of his head to midline sometime tonight or early morning. They are pushing up the levels on the ventilator that allows him to breathe on his own. If they can push it enough, they think that the ventilator may come out around 3:00am. If I come back to the room tonight, and they are ready to pull out the ventilator, they will call me so that I can be with him. After they remove the ventilator, they will give him a cat scan. It's going to be a busy night!

We haven't seen the incision yet. They don't remove the bandage unless there is seepage.

Talk to you all later. Hope you all have a good night.

Well, today was another long day. Chance had a peaceful night last night.

For most of the morning, he slept. Around 3:00, he woke up and mouthed 'I want my mama'. How exciting is that? He spent quite awhile awake and agitated. This happened twice today.

He still has the ventilator hooked up and still has his head taped down. They are trying to keep him sedated so he doesn't get so agitated but the medicine just isn't working for him. They tried a new mixture on him tonight. We hope it works and that his night goes better than his evening has went. One time he was trying to sit up and I was telling him to lay back down and relax, that he had to get his rest and you know what that boy did to me? HE STUCK HIS TOUNGUE OUT AT ME!!!!!

The things that he has tried to say are (and anyone that knows him will really appreciate these) 'I want to talk', 'I want to play football', 'I want to play xbox', I want to get up', and 'I want to go home'. He told us that his head hurt a few times and they gave him so medicine for that.

All of the doctors are very pleased with the way that things are going. The things that he is trying to say are appropriate for his age. It isn't garbled up. He can't wait to come home and see all of his friends and have a sleepover with Noah and Adam.

The plan for tomorrow evening is to try and take the tape off and the ventilator out. As long as his head is taped, he has to stay sedated and as long as he is sedated, he has to have the ventilator. With the way things are moving along, we think he will be tapefree and ventilator free by the time bed time rolls around tomorrow.

We have some pictures that I am still thinking about on whether or not we should share them. They have mostly been taken for him to see someday down the road to show him where he started his 'new life'.

I don't remember if I told anyone or not already, but right before surgery, they asked us to donate Chance's brain tissue to be studied and of course we agreed. Anything that we can do to help doctors understand what happened when Chance was forming, we will do so that maybe someday, they can fix it or stop it from happening. Who knows, maybe some more good will come out of this.

Thanks for all of the support and we'll talk tomorrow.

Hi everyone. It is 11:07 PM. We just got back from the hospital. Chance is resting peacefully in the PICU after being in the OR all day. His face is already a little bit swelled and they told us that it would be worse tomorrow. There were no complications during surgery.

He was to start surgery at 7:30 this morning but they had some issues with beds in the PICU. Apparently, they can't start until they know that they have a bed for the patient to go to for sure. Bryan and I walked him back to the OR around 9 and Bryan went in with him to the OR for him to go to sleep. They started the first incision around 10:30 and the waiting began. The doctors were really good. They either called or came to the waiting room every hour to update us on his progress. Every time it was 'he is stable, vitals look good, we're moving along'. They came out around 7:30 pm and told us that they were finishing up, so by 9:30, we were getting a little bit antsy. At 10:00 pm they wheeled him down the hall and we got our first glimpse of him. What an emotional 60 seconds. Then we had to wait for another 30 minutes while they got him situated in his room in the PICU. They gave him a wake up test and he moved all four extremities and tried to pull his breathing tube out. (THAT'S MY CHANCE!!!!) After that, they put him back to sleep.

His head is taped down, to the side, to the bed. His hands are tied to the bed too. This is for his safety. They will keep him sedated all of tonight and we're not sure about tomorrow. We gave him his Steeler's teddy bear last night and it is on the bed with him to watch over him and be there if he wakes up. He has many tubes coming out of many places, LOTS.

I have to go call Quinton now and let him know that his little brother is doing good. Thanks for all the prayers and thoughts, they mean the world. We'll keep you updated and love you all.

--I recieved a phone call this morning, when they woke up, from Chance around 5:30am. He seemed rather tired but was very excited to get rid of his seizures.
--They had said that surgery would be around 7:30, however, they didn't take him back until 8:43.
--They started the actual procedure around 10:37. Chance chose to go completely bald.
--The skull was removed at 11:42.
--They began cutting the brain at 12:00.
--At 3:53, my mom texted me and said that they were done with most of the first and second parts of the brian--there are four parts alltogether.
--At 7:25, I recieved a text that said they were closing his head.

They called around 7:43 to tell me that the surgeon was very tired. They couldn't get all of the left side out because it was very hard, unlike what the right side was like. Everything went as expected.

This is just a rough draft of todays timeline thus far.

--Dee