Wednesday, August 27, 2008
We have been living life pretty normally for the most part - how can you not when he doesn't know and we have been living normally (our normal) pretty much since his 1st surgery. When explaining things to others I often feel like I'm talking about an episode on Hopkins and not my child. Do you know what I mean? You talk about it with a straight face and then walk away and think about it and cry. Honestly, I think I've done very well - much better than I expected myself to be doing. I think Evan being the age he is has helped... How can you worry about this when you have this child running and jumping and singing his favorite song, Taylor Swifts "Our Song." (I'll have to record him and post it here... it is so cute!) I'll post some pic's once we get home.
Anyone reading this have experience with homografts??? You know me... I'll be researching this.
Tuesday, August 12, 2008
Want to help Team Brave Hearts raise money for AHA by buying books for your own kiddos? Go to this fundraising site hosted by Usborne Books and place your order. www.ubah.com/BF25615
*This will stay at the top of our blog until the walk - see updates below.
I think I had talked about it before but I knew that Evan would need time to process what was going to happen at the hospital and that we would need to explain it to him a few days before to give him that time. I dreaded telling him and struggled with what to say. There really isn't much to say to make a cath. sound good. I was able to tell him when he had his scan that we would be with him the entire time and that if he was brave we would go home and not have to stay. On the way home the Monday before the cath. I secretly hoped Eric would work late so I could blame not telling him on that I wanted him to be there, no such luck. After dinner I was still sending silent prayers of what in the world I was going to say.
Then it just came to me. I remembered a book and hat Evan had received from the hospital at his OHS called Hero Club - http://www.happyhatsforkids.com/intro.html . Evan likes to pull this book out every once and a while and is very proud reading it - knowing the book will tell him that he is a member of the hero club. This little book tells about a child going into the hospital scared and is given a hat which all the other kids say has magical powers and to put it on. It goes on to explain certain hospital procedures (x-rays, blood draws, IV's, medicine, etc.) and what to expect. The hat comes to life while the child is asleep in surgery and they go on an adventure and he explains that it isn't the hat that is magical at all but that the child was a hero because he was brave and so on. After reading this to Evan I told him there was a reason I had read it and that he was going to the hospital for a cath. He didn't cry... he did ask several questions. One question was, "why does my heart need help?" I looked at him for a moment and remembered the straws I just saw in the kitchen drawer and went and got one and told Evan to blow through it. Then I pinched it and told him to blow through it again. I told him he has an artery that is like a straw that takes blood to his lungs from his heart and it is a little pinched and that they needed to blow through it. Evan seemed okay with this although he did share with a few people that he was going to the hospital to have his straw blown into.
The next few days were full of behavioral issues. It was hard seeing him be so aggressive (more so than usual) and struggle to deal with emotions. Evan's side of one situation was that before T-Ball he and a few friends were running and they started chasing him, he asked them to stop and they didn't so he was starting to cry and they laughed. All we saw was Evan with his arms around the kid taking him down. He said they hurt him and that he was in turn hurting them. He doesn't know how to "play" the game back, he only knows how to respond physically. He doesn't get that at all - he's very aggressive but very tender hearted. We spent an evening this week role playing and using words instead of actions to stop someone from getting a kick out of him crying.
I'll post again later with pictures on how we spent the night last night. He is going to send me to the looney house I'm sure.
Tuesday, August 05, 2008
We are so thankful for our Brave little boy. Evan is doing well - he woke up and wanted to go home but had difficulty peeing as he had been cath'd during the procedure and it burned. Once he did that through tears, we were able to leave. We got home late last night, carried Evan to bed and slept. Evan woke up at 5am and got sick. By 7 this morning we were showering and trying to remove the nasty bandages and packing from both legs as it seems both were attempted. I believe it took an entire hour but he is feeling much better now.
As I said, the board will be discussing Evan's case, I believe, next Monday. I know that there is a reason for all of this, although it doesn't seem fair at this moment. One of the options that were discussed yesterday could in fact make it possible for this to be the only surgery Evan has to face, the other options would require another surgery at adulthood. Please pray for the decisions being made by the team. Please pray for us to remain strong in our faith. Please pray for our hope to not diminish as we have been given all reason to believe the outcome of this to be fine although the road will be hard.