Recap of Today, April 6th, 2012

Today was a great day! It started with certain plans and those plans got changed. When we found out Cully was allowed to see his brother, we were excited but i think Cully was the most excited! Several times Cully would say something that would show you just how much he has missed his big brother. We were walking around (because Caleb needed to walk..more on that later) and Cully grabbed his hand. He said, "I need to hold his hand because you know I haven't seen him in like 10 days." Cully helped his brother take a walk around the floor and ultimately to the play room.

When asked if he wanted to go and do something, he would most often answer, "No, I want to stay in this room with my brother!" I took him to get something to eat and the entire time he was making sure that when we were done we were headed back to Caleb's room. So, all throughout the day, as long as he was in Caleb's room, things were going to be good. I love my boys and love the fact that they love to be together. It was sad when Cully had to finally go home. With a few hugs and kisses and a few tears, and only after he was told they were coming back first thing in the morning, they headed home to get some rest. I felt like the best dad ever today...Cully told me I was going home with him to sleep tonight and Caleb told me I was staying at the hospital with him tonight. It was a hard choice but we decided it would be good for me to be here one more night with Caleb if that was what he wanted but only with the thought that tomorrow I was going home with Cully to sleep and play some mad Mario Bros together!

Back to Caleb's health now...when he woke up this morning, he breathing was very shallow and rushed. The drs were a little concerned so they sent him down to get another chest x-ray to make sure everything was ok. The x-ray showed he had a little fluid in one of his lungs and needed to do whatever he could to help get that out. They said it was very normal because he is drinking a ton these days as well as having a constant iv fluid drip running. So, that is a lot of liquid for a little boy of his stature to have in his body. They have been giving him medicine that makes him urinate a lot (and I mean a lot) to try and push fluids through him quickly and get rid of excess fluids. They also gave him a breathing tool that pushes him to take deep breaths. Many of you have probably seen them or used them. You breathe in as long as you can as a little plastic thing rises in a cylinder. He has to do this 10 times an hour throughout the day. We did not stick to it rigidly, but he did it a lot today. Another thing that helps is walking. This gets his lungs going and expanding thus allowing the liquid to leave his lungs. We walked some today, but honestly he really didn't feel like doing much walking at all. So, hopefully tomorrow he will feel up for more walking and exploring the floor that he is on.

Before our walk, we had to change out his bandage that holds his port in as well as put his feeding tube a little bit farther down his body. They did both of these together and honestly it was a rough experience. However, we made it through and everything is where it should be.

While we were on our walk, we went to the playroom on his floor. He wasn't really excited about this trip (mood swings from chemo and steroid) but once we got there, he ended up spending some time there playing with those who had come to visit. He also met a few other children from his floor and saw them hooked up to many gadgets as well. Hopefully he realized he is not alone and that other children are going through the same exact thing he is.

We had a steady flow of visitors today which Caleb seemed to enjoy. We are thankful for all those who came out today! We know if takes time away from other things you could be doing but it makes a huge difference in our lives as well as Caleb's!

Today ended with our first shower after getting the port and feeding tube. That was quite an adventure to say the least! However, he did a good job and the nurse said he was the first child who took their first shower after getting their port and didn't have to get it re-bandaged. Way to go Caleb! He was pretty tired and after the shower he went to sleep very quickly. He is sleeping well and will hopefully sleep through most of what they do to him tonight.

He has had no more chemo today or tonight. We are not sure when the next round will be given.

Tonight, Tera and I started our education with the nurse for when we go home in between treatments. It seems so overwhelming and somewhat like we are bringing a baby home as first time parents. Thoughts were going through my mind (as was Tera's I believe) like, "Can we do this? What if this goes wrong? What if he gets a fever? What if he starts bleeding? What if...?" and things just keep coming to mind. So, pray for Tera and I to realize we have some time to figure it out and to have a peace that we can do this.

One last story (I am sorry this has been a long post). I gave Caleb one my many Braveheart speeches tonight. They usually go, "Caleb, we have told you that this is not going to be easy or fun, but we are going to make it through this together. We are going to beat this thing! You have a lot of people who love you and are praying for you all over the world. WE ARE GOING TO DO THIS!" I mean I am pouring my heart into it and letting him have it with conviction. I stop and wait for his response and he looks at me and says, "Dad, I have to go to bathroom!" I about lost it! It was so funny! I mean I was bringing it and that was it...God has given laughter in the midst of this journey! I love this kid!

Grace and Peace!