Wednesday, August 27, 2008

Received "The Call"

The heart board meeting was this past Monday and all the Dr.'s were there and were able to discuss Evan and the options. The plan is to do a Homograft which is a donor valve and artery. This sounds like a big surgery. (Aren't they all?) The surgeons thoughts on the other options were, that if he was in there why wouldn't he be fixing the problem instead of patching it over to be done later. Potentially he said this could be forever, although that is rare. Usually this needs to be replaced in 10 years, so in his late teens. There is also a need for it to be replaced sooner if it calcifies. We are waiting for a call from the surgeon to decide a date but the cardio feels that fall break would be best for Evan to keep his routine as normal as possible, and that is Oct. 20th.
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.

video

Tuesday, August 12, 2008

Kentuckiana Heart Walk 2008 - Team Brave Hearts

All of you that keep up with Evan's blog have been touched by CHD's in some way, either by Evan or your own child. I wanted to post a link to his donation page for the American Heart Association's Kentuckiana 2008 Heartwalk. This is our 4th walk and we will be walking again this year with our heart family "Team Brave Hearts". Our main goal in participating in this walk is to raise awareness of CHD's and funds for much needed research. If anyone would like to donate, his personal donation page link is:
http://heartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=255198&supId=225090306

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.

Lets add a concussion to the mix

So.... Monday night we get home, I make dinner, we eat, take our bath's and sit down for a quiet evening of watching the Olympics. Eric's Mom had made some yummy cake so we were going to have some dessert. Eric was bringing the plates and coffee into the living room. Evan saw Daddy coming around the corner and ran and did a kung fu move and socked Eric in the belly. Eric was telling Evan that we do not hit and to be careful when someone has a drink. Evan was crying and pretending that he had never been told this before and came running for Mommy. He was upset that Daddy had scolded him and I was telling him that he has to be disciplined. He cheered up and we were playing back and forth.... next thing I know Evan jerk's away from me, head first, with all of his 50 lbs. straight into the coffee table with his head. The cracking sound made me scared to look at his face when I grabbed him up. Seriously, I just knew I would see his skull or brains. I got his hands away and immediately there was a bump coming up that went to baseball size in seconds. As I said before, we had just had our bath's so everyone was in pj's. We got dressed and out the door in lightning speed... I got an ice pack and held it on his head the ride to the Dr.'s and at one point during the 3 minute drive Evan told me he couldn't see.... I panicked and asked him to tell me how many fingers and he was right... I asked him why he said he couldn't see and his response was that the ice pack was over his eyes, oiy. The Dr. kept us there for a few hours to check his vitals and make sure he hadn't fractured his skull. Thankfully it is not that serious and we were able to come home as long as we put ice on it for 5 min. every hour and woke him every hour. Fun night. Seriously....


Check out this pic from this morning - it was down to egg size.


The Dr. said he would probably have two black eyes and told Evan to tell people who asked that, "You should see the other guy." If he only knew, read the last post.

Going Back

While it is still fresh on my memory I wanted to go back a bit and post about how we told Evan and how he handled it.

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

Unsuccessful Cath = Surgery #2

We are home, tired and incredibly sad about how yesterday turned out. Evan spent 7 long hours in the cath lab. The longest any of his procedures, including his OHS, has ever taken. Eric & I, along with other family were on pins and needles the entire time. It seemed as if complications were the word from the get go. I hope I understood everything and can document it all correctly. The main vein that is usually what is used for the cath had develped thrombosis (clotted) from how many times it had been used I believe. They have other options but none that are as good. So from the very first call from the lab we were told they were having difficulty. They options they had were going through the right leg or the neck but ended up gaining access through the femoral artery in the left leg and was able to cross over into the arterial artery. They then called to say they were getting pictures and measurements and that the right pulmonary artery was measuring 12.5mm and the left with the stent 7mm so the plan was to begin the process to dilate the stent. We received many calls after that saying they were trying to guide the wire into the stent and were having difficulty finding a wire flexible enough to make the crazy turns that Evan's anatomy has in his left pulmonary artery - explained to be a very diffult S shape. On wire #7 they called and said they were bringing in another team of Dr's. We receieved another call within minutes after a team of 4 Dr.'s began working that they had guided wire #8 into the stent and were going to begin leading the balloon in. There were smiles through tears in the waiting room and the nurse seemed like a stressful situation had ended with a good outcome. We were still celebrating when the last call came that said, it failed. As soon as the began trying to lead the balloon in the wire came out and after several attempts the team of 4 decided that there was just no way to get the wire and balloon successfully through the S curve of the left pulmonary artery to dilate the stent. We were asked to come to the dreaded room of bad news and our tears turned into stares of disbelief. I kept waiting for a nurse or Dr. to come around the corner and say, "We are in, it's okay." Instead, the tired Dr. came around the corner looking defeated and disgusted. He explained with pictures that showed how many times they tried over and over and over to get a wire, any wire to follow that complicated S curve and enter perfectly into that narrowed stent and everytime the wire would not cooperate. The dreaded words, "surgery." He explained that this is our only option and that it would need to be soon. There are a few different options for the surgery although I won't go into them here until I understand them more myself. They are presenting Evan to the surgeon next Mon. at heart board and he will make the final decision on what would be best for Evan. Please pray for us... I cannot even begin to come to terms with facing surgery again.
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.