They came in at 12:40 and said that the first part of the surgery was complete - they had connected the donor to the left pulmonary artery and they had left to connect it to the right pulmonary artery and connect the valve. They came in at 1:30 and said that surgery was complete, the valve was working and the artery's were wide open. He is off Bypass and needed a dose of dopamine and a little initial help with pacemaker but established a normal rhythm and was taken off of it. They still have chest tubes to put in and to close. Once that is complete we will talk to the surgeon.
As I as typing the surgeon came in and said things went great... they were able to put in a big homograft - bigger than expected. He said that Evan is doing excellent and has continued to remain in his own rhythm. They are closing him now and putting in the chest tubes so, it will be a few hours before we are able to see him. Please pray. I know the next 24 hrs. are critical.
Monday, October 06, 2008
Update #1
Evan did well this morning, thirsty and hungry but well. They came in at about 7:20 and tried to let him drink his versed and he vomited immediately so they had to do versed up the nose (Evan hates this) and he gagged but, kept it down. Within 10 or so minutes they came and got him... We have a private waiting room and are with friends and family praying and pacing. They came at 9:28 and said that they had the lines in and again at 10:20 and said they were in though the scar tissue. They came again at 10:40 and said he was on Bypass... We are anxiously awaiting for the news that they are done and he is off Bypss but, don't expect it for a few hours. Please continue to pray.
Saturday, October 04, 2008
Pre-Op is over - Mon. is the Big Day
Things have been going well. The cancellation last week was a blessing in disguise. I got to spend a week uninterrupted with my little guy and we just had some really nice together time.
Yesterday was pre-op. We were to be at the cardio at 9:00 for a complete exam and then on to the hospital for blood draw's, x-rays, urinalysis, etc. Also to meet with all the Dr.'s and nurses that will be on his case for Monday. Let me tell you that my little brave guy had a hard time with blood draw's. He was brave and let them do it - all 4 times - but, he let him know (very loudly) that he did NOT like it one bit. I don't blame him. They had such a hard time getting blood. Once that was over he was rewarded with a slushy and a visit to the play room. I stayed back to talk to Dr.'s and nurses. There was a moment I was alone and saw our nurse on the phone and heard her mention Evan's Dr.'s name and then seemed upset. Let me tell you that my anxiety went over the edge and I was praying over and over that she was not about to give me bad news. She disappeared and my panic increased. I finally asked another nurse to please go find her. She came around the corner crying and I thought... brace yourself Sarah... She said, "I'm so sorry... I'm stupid... I sent his blood wrong and we have to redo the blood draw." I breathed a huge sigh of relief and told her that was okay... Little did she know of how she sent my mind racing into a bad place - I would so much to always get the news straight. They did the blood draw again and everything came back fine.
We went to see the surgeon and he is awesome. He could not believe how much Evan had grown and how well he looked with all he has going on. Evan really does look awesome. He said that he was going to do a homograft and should be done by mid afternoon. He seemed very confident and believed we could be home in 5 days... We left the hospital and all I could think about was that in one week would could possibly be already leaving again for home!!! I'm so ready for this and for it to be over.
We have some other news but... I'm saving it for our first post from home. Any guesses???
I'll be posting from the hospital as I can. If I can't post, I'll have someone else do so at least once a day.
Please say a prayer for Evan - that surgery is a complete success and that he handles things well, cooperates with the nurses and Dr.'s and recovers from this quickly.
Thank you for checking in, praying and supporting us and our little Brave Heart.
Check out the pic's of Evan and his BFF at the pirates and princess' party at the zoo.
Yesterday was pre-op. We were to be at the cardio at 9:00 for a complete exam and then on to the hospital for blood draw's, x-rays, urinalysis, etc. Also to meet with all the Dr.'s and nurses that will be on his case for Monday. Let me tell you that my little brave guy had a hard time with blood draw's. He was brave and let them do it - all 4 times - but, he let him know (very loudly) that he did NOT like it one bit. I don't blame him. They had such a hard time getting blood. Once that was over he was rewarded with a slushy and a visit to the play room. I stayed back to talk to Dr.'s and nurses. There was a moment I was alone and saw our nurse on the phone and heard her mention Evan's Dr.'s name and then seemed upset. Let me tell you that my anxiety went over the edge and I was praying over and over that she was not about to give me bad news. She disappeared and my panic increased. I finally asked another nurse to please go find her. She came around the corner crying and I thought... brace yourself Sarah... She said, "I'm so sorry... I'm stupid... I sent his blood wrong and we have to redo the blood draw." I breathed a huge sigh of relief and told her that was okay... Little did she know of how she sent my mind racing into a bad place - I would so much to always get the news straight. They did the blood draw again and everything came back fine.
We went to see the surgeon and he is awesome. He could not believe how much Evan had grown and how well he looked with all he has going on. Evan really does look awesome. He said that he was going to do a homograft and should be done by mid afternoon. He seemed very confident and believed we could be home in 5 days... We left the hospital and all I could think about was that in one week would could possibly be already leaving again for home!!! I'm so ready for this and for it to be over.
We have some other news but... I'm saving it for our first post from home. Any guesses???
I'll be posting from the hospital as I can. If I can't post, I'll have someone else do so at least once a day.
Please say a prayer for Evan - that surgery is a complete success and that he handles things well, cooperates with the nurses and Dr.'s and recovers from this quickly.
Thank you for checking in, praying and supporting us and our little Brave Heart.
Check out the pic's of Evan and his BFF at the pirates and princess' party at the zoo.
Monday, September 29, 2008
Friday, September 26, 2008
Evan's Surgery Rescheduled
We received a call last night that an infant was born yesterday that needs emergency surgery so, Evan's surgery would need to be cancelled. I was at a loss somewhat - all this preparing and building up for the day to have it taken away. I cried... I had to tell Evan... then I thought of the family that would be enduring this walk with their newborn and remembered that God is in control. Who knows the reasons completely but... Jesus Loves us and is looking out for us. So... Evan's surgery has been rescheduled for the next Monday, October 6th. We seem to like October... Evan's first surgery was Oct. 26th. On my way to work this morning a song came over the radio just for me - the lyrics begin:
I am not skilled to understand
What God has willed, what God has planned
I only know at his right hand
Stands one who is my savior
I am not skilled to understand
What God has willed, what God has planned
I only know at his right hand
Stands one who is my savior
Saturday, September 20, 2008
Friday, September 19, 2008
Indy Trip and Evan gets the news
Last weekend we left early on Thursday morning and took off for Indianapolis. We arrived at the zoo shortly after it opened and it was a beautiful day. The Indianapolis Zoo is amazing. We have a membership to the Louisville Zoo and we go there often but... WOW!!! We had so much fun seeing the sharks, sea lions, walrus' and the dolphin show was awesome. I felt like I was at the zoo part of the day and at Sea World for the other part. We had so much fun there. We got to our hotel right at checkin time and were at their indoor waterpark in no time. We stayed there until they were about to close. They had 5 seperate parts - a pool, a wading pool with a huge pirate ship, a lazy river, hot tubs and then of course some huge crazy waterslides. I was surprised that Evan passed the hight requirements to ride the slides. I asked him if he was interested in going down one with me on a double raft and expecting the answer to be no, he said yes. So up the flights of stairs we go and into the raft at the top - we start down this huge slide and I'm screaming and I hear Evan screaming and what I thought was crying. At the end we swoosh out and I jump off the raft to get him and he is laughing and screaming, "Let's do it again!" He is definately my child. Since the stairs going up to the slides were 4 flights - I limited our slide to one an hour but... Eric got it on video and I'll post that tonight. The next day we went to Indianapolis Childrens Museum and it is huge. Evan LOVED the dinosaurs and the dig site. He wanted to stay there all day and we even had to go back before we could leave. The rest of the museum was awesome to us but Evan seemed that either it was too small for him or over his head. We had a great weekend away.
Yesterday was our appointment with our beloved cardiologist who had offered to be the one to break the news to Evan. We went in and sat down and he sat across from Evan and began to draw a heart and explain to Evan what they did in his first surgery and why they did the cath and how the last cath didn't do it's job. Evan was listening and looking away and things in his office and then he said... Evan, you remember how you had the cath. and went to sleep, well... your going to have to go back to the hospital and go to sleep again and we are going to give you a super dooper valve and straw to make you strong... when you wake up your going to hurt and be sore but... I'm going to be with you and give you medicine to make it better and your Mommy and Daddy will be there... I will be with you in my pajamas so... don't be scared. Evan started telling him that he is strong, very strong. He told him that there are different types of strong - strong in that you can lift heavy things and then there is strong in you have courage and are brave. He told Evan that he would need to be brave. Evan said that he didn't like that and didn't want to. Evan told him that he needed to go in his shell and have a talk with himself (don't know where that came from.) and got back up and said, "No, we can't do this, not until I'm 5." He told him to talk to his shell again and tell it that he would need to be brave so Evan did this again with the same answer. He talked to Evan about how brave he has been in the past and that he could do it again and Evan said, "well... I need to talk to my shell again and this time I need you all to close your eyes and cover your ears." Dr. McOmber looked at us and shut his eyes and covered his ears and we did the same. You could hear Evan talking outloud to himself saying, "Yeah, uh huh, okay, no, I don't like this, okay, okay." He told us we could look up and we did and he said, "okay... we talked and we will be brave." He asked Evan if his shell was like him being scared and he said yes and he told him that, that is okay and that it is normal for him to be scared but that we would be there for him and help him. He then asked if we could leave and Dr. McOmber told him that yes we could leave but did he have any questions and he said no but he told him that if he did have any questions to call him or ask his Mommy and Daddy and that if we didn't know that we would call him. Evan went off to find the nurses and candy and stickers. We stuck back a minute and thanked him and he reminded us that there would be many emotions and that we would need to be patient and let him have those.
It was interesting to see how Evan reacted. So sweet and innocent and at the same time to see how he interpreted the information and spoke with himself.
So now we all know. We've got fun plans for the weekend - a pirate and princess party at our zoo and going to see Igor at the movies. Pray for us and that when/if questions are asked that we have the right words.
Yesterday was our appointment with our beloved cardiologist who had offered to be the one to break the news to Evan. We went in and sat down and he sat across from Evan and began to draw a heart and explain to Evan what they did in his first surgery and why they did the cath and how the last cath didn't do it's job. Evan was listening and looking away and things in his office and then he said... Evan, you remember how you had the cath. and went to sleep, well... your going to have to go back to the hospital and go to sleep again and we are going to give you a super dooper valve and straw to make you strong... when you wake up your going to hurt and be sore but... I'm going to be with you and give you medicine to make it better and your Mommy and Daddy will be there... I will be with you in my pajamas so... don't be scared. Evan started telling him that he is strong, very strong. He told him that there are different types of strong - strong in that you can lift heavy things and then there is strong in you have courage and are brave. He told Evan that he would need to be brave. Evan said that he didn't like that and didn't want to. Evan told him that he needed to go in his shell and have a talk with himself (don't know where that came from.) and got back up and said, "No, we can't do this, not until I'm 5." He told him to talk to his shell again and tell it that he would need to be brave so Evan did this again with the same answer. He talked to Evan about how brave he has been in the past and that he could do it again and Evan said, "well... I need to talk to my shell again and this time I need you all to close your eyes and cover your ears." Dr. McOmber looked at us and shut his eyes and covered his ears and we did the same. You could hear Evan talking outloud to himself saying, "Yeah, uh huh, okay, no, I don't like this, okay, okay." He told us we could look up and we did and he said, "okay... we talked and we will be brave." He asked Evan if his shell was like him being scared and he said yes and he told him that, that is okay and that it is normal for him to be scared but that we would be there for him and help him. He then asked if we could leave and Dr. McOmber told him that yes we could leave but did he have any questions and he said no but he told him that if he did have any questions to call him or ask his Mommy and Daddy and that if we didn't know that we would call him. Evan went off to find the nurses and candy and stickers. We stuck back a minute and thanked him and he reminded us that there would be many emotions and that we would need to be patient and let him have those.
It was interesting to see how Evan reacted. So sweet and innocent and at the same time to see how he interpreted the information and spoke with himself.
So now we all know. We've got fun plans for the weekend - a pirate and princess party at our zoo and going to see Igor at the movies. Pray for us and that when/if questions are asked that we have the right words.
Friday, September 05, 2008
We have a date
I received the call today. Because of scheduling issues and not wanting Evan's surgery to be late in the week (any of you heart families know why, don't you?) we have agreed upon a date for Evan's 2nd open heart surgery to replace his pulmonary artery and valve, September 29th.
Evan had just fallen asleep when I received the call and for that I'm thankful. I had 2 hours to just let it out - all of these emotions I've been keeping locked. It is a somewhat helpless, powerless feeling - knowing there is nothing I can do to prevent this from happening or protecting him from it, as it is what is needed. Oh how it hurts. I think I had already prepared for the tentative Oct. 20th date and this seems oh so soon. After I pulled myself together I started thinking about how we would feel about this when Oct. 20th rolls around and we are on the other side of this.
I also had a call yesterday with the cardio to ask questions I had concerning the decision chosen to do a Homograft. The question I had was why cadaver was chosen over bovine and the reason I was given was that bovine valves are taken from the neck and do not include the artery branches. Evan's main problem is his left pulmonary artery. Evan's valve is leaking on the severe side but... they would not be replacing it now if they weren't going in already to replace the left pulmonary artery. The cadaver valve comes with the artery branches so that is what that option was chosen. I also wondered that since this is donor would he need rejection med's and he explained that since this is not a complete working part it is not needed, so that is good. I also asked if there is ever a wait for a match. His response was that, it had happened but once a date was chosen they would be looking to see if there was a match and if there was it would be reserved for him. On this.... I have always thought that being a donor was good, that I would do it myself but now.... oh thank GOD for the decision the donors and their families made. What a bittersweet topic...
So we have 3 weeks... This weekend is our Team Brave Hearts golf scramble benefiting AHA. I believe next weekend we will go away for a long weekend to just do something really fun and be together - I'm thinking Indianapolis to their zoo, then stay at their hotel with indoor waterpark and then to the children's museum the next day - Evan will love that. I believe that on Sept. 22nd we'll be going to the cardio so he can explain things to Evan and prepare him. If you see us between now and then please don't mention this in front of him. We do not want him to be worried and scared for 3 weeks. We have agreed that the cardio will explain everything to him and then that will give us a week to deal with the emotions as a family with him. September 26th will be pre-op. September 27th is our heart walk - I'm sure that will be a very emotional day. That will bring us all too quickly to September 29th.
Please pray for Evan... pray for us as parents to be strong... pray for the Dr.'s and nurses that will be caring for him and for the overall success of the surgery. It means so much to get the notes, calls, emails, etc. I'm saying this now because I seem to isolate myself but it truly means so much when someone asks and shows their concern for Our Little Braveheart.
Evan had just fallen asleep when I received the call and for that I'm thankful. I had 2 hours to just let it out - all of these emotions I've been keeping locked. It is a somewhat helpless, powerless feeling - knowing there is nothing I can do to prevent this from happening or protecting him from it, as it is what is needed. Oh how it hurts. I think I had already prepared for the tentative Oct. 20th date and this seems oh so soon. After I pulled myself together I started thinking about how we would feel about this when Oct. 20th rolls around and we are on the other side of this.
I also had a call yesterday with the cardio to ask questions I had concerning the decision chosen to do a Homograft. The question I had was why cadaver was chosen over bovine and the reason I was given was that bovine valves are taken from the neck and do not include the artery branches. Evan's main problem is his left pulmonary artery. Evan's valve is leaking on the severe side but... they would not be replacing it now if they weren't going in already to replace the left pulmonary artery. The cadaver valve comes with the artery branches so that is what that option was chosen. I also wondered that since this is donor would he need rejection med's and he explained that since this is not a complete working part it is not needed, so that is good. I also asked if there is ever a wait for a match. His response was that, it had happened but once a date was chosen they would be looking to see if there was a match and if there was it would be reserved for him. On this.... I have always thought that being a donor was good, that I would do it myself but now.... oh thank GOD for the decision the donors and their families made. What a bittersweet topic...
So we have 3 weeks... This weekend is our Team Brave Hearts golf scramble benefiting AHA. I believe next weekend we will go away for a long weekend to just do something really fun and be together - I'm thinking Indianapolis to their zoo, then stay at their hotel with indoor waterpark and then to the children's museum the next day - Evan will love that. I believe that on Sept. 22nd we'll be going to the cardio so he can explain things to Evan and prepare him. If you see us between now and then please don't mention this in front of him. We do not want him to be worried and scared for 3 weeks. We have agreed that the cardio will explain everything to him and then that will give us a week to deal with the emotions as a family with him. September 26th will be pre-op. September 27th is our heart walk - I'm sure that will be a very emotional day. That will bring us all too quickly to September 29th.
Please pray for Evan... pray for us as parents to be strong... pray for the Dr.'s and nurses that will be caring for him and for the overall success of the surgery. It means so much to get the notes, calls, emails, etc. I'm saying this now because I seem to isolate myself but it truly means so much when someone asks and shows their concern for Our Little Braveheart.
Thursday, September 04, 2008
Song of my heart
The year Evan was born I was introduced to a local family whose son also had the same CHD and although I wish we hadn't met on those terms this family has become family to me. (By the way this awesome family is welcoming baby #2 - Jameson, through adoption from Korea hopefully this week!!!)
We formed a group with another family - Team Brave Hearts and this has grown now to 12 families and we are gearing up for our 4th AHA Heart Walk and giving our 3rd Golf Scramble this Sunday. It gives us an outlet to raise awareness and join our families together for a good cause.
Every year I make a picture show of all the heart kids involved and it plays to music over and over at the Country Club so the golfers can see why they are there. I'll try to post it here.
There are several songs that play during the picture show and "He's my Son" by Mark Schultz plays during Evan's pictures.
There is one song this year though that seems to speak my heart and I wanted to share it - Celine Dion's "Miracle".
You're my life's one miracle
Everything I've done that's good
And you break my heart with tenderness
And I confess it's true
I never knew a love like this 'til you
You're the reason I was born
Now I finally know for sure
And I'm overwhelmed with happiness
So blessed to hold you close
The one that I love most
Though the future has so much for you in store
Who could ever love you more
The nearest thing to heaven
You're my angel from above
Only God creates such perfect love
When you smile at me I cry
And to save your life I'd die
With a romance that is pure in heart
You are my dearest part
Whatever it requires
I live for your desires
Forget my own, your needs will come before
Who could ever love you more
There is nothing you could ever do
To make me stop loving you
And every breath I take Is always for your sake
You sleep inside my dreams And know for sure
Who could ever love you more
http://www.youtube.com/watch?v=VGNQ9bu1mDk
We formed a group with another family - Team Brave Hearts and this has grown now to 12 families and we are gearing up for our 4th AHA Heart Walk and giving our 3rd Golf Scramble this Sunday. It gives us an outlet to raise awareness and join our families together for a good cause.
Every year I make a picture show of all the heart kids involved and it plays to music over and over at the Country Club so the golfers can see why they are there. I'll try to post it here.
There are several songs that play during the picture show and "He's my Son" by Mark Schultz plays during Evan's pictures.
There is one song this year though that seems to speak my heart and I wanted to share it - Celine Dion's "Miracle".
You're my life's one miracle
Everything I've done that's good
And you break my heart with tenderness
And I confess it's true
I never knew a love like this 'til you
You're the reason I was born
Now I finally know for sure
And I'm overwhelmed with happiness
So blessed to hold you close
The one that I love most
Though the future has so much for you in store
Who could ever love you more
The nearest thing to heaven
You're my angel from above
Only God creates such perfect love
When you smile at me I cry
And to save your life I'd die
With a romance that is pure in heart
You are my dearest part
Whatever it requires
I live for your desires
Forget my own, your needs will come before
Who could ever love you more
There is nothing you could ever do
To make me stop loving you
And every breath I take Is always for your sake
You sleep inside my dreams And know for sure
Who could ever love you more
http://www.youtube.com/watch?v=VGNQ9bu1mDk
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.
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
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
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.
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.
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.
Wednesday, July 23, 2008
Cath. Date
The Dr. called with a few options on cath. dates and we decided that although it sounds so soon having it done before school starts would be best. The pre-op will be on Friday, Aug. 1st and the cath. on the following Mon., Aug. 4th.
So... I guess on Monday evening we'll tell Evan and begin preparing him. He did so well with the scan but, we were able to promise him things with the scan. We were able to tell him if he was brave and got the IV he could go without the Versed up the nose (which he hates) and that we would be able to leave and do something fun. There is nothing to promise him with the cath. All I'll be able to tell him is what will happen not options that if you do this it will be better. He knows now what a cath. means and will immediately begin asking I'm sure about Versed. I believe Versed will be necessary as without it would be mean walking into the cath. lab with no meds if he didn't have it and although he is strong I'm sure that would be hard. He will ask if he has to be without us and yes he will when he wakes up in recovery. He'll ask if he has to stay the night and yes, he will have to stay 24 hrs. in ICU. He is 4 though and I have to prepare him, I can't walk into the hospital and him be blindsighted by what will happen. This is going to be tough.
So... I guess on Monday evening we'll tell Evan and begin preparing him. He did so well with the scan but, we were able to promise him things with the scan. We were able to tell him if he was brave and got the IV he could go without the Versed up the nose (which he hates) and that we would be able to leave and do something fun. There is nothing to promise him with the cath. All I'll be able to tell him is what will happen not options that if you do this it will be better. He knows now what a cath. means and will immediately begin asking I'm sure about Versed. I believe Versed will be necessary as without it would be mean walking into the cath. lab with no meds if he didn't have it and although he is strong I'm sure that would be hard. He will ask if he has to be without us and yes he will when he wakes up in recovery. He'll ask if he has to stay the night and yes, he will have to stay 24 hrs. in ICU. He is 4 though and I have to prepare him, I can't walk into the hospital and him be blindsighted by what will happen. This is going to be tough.
Tuesday, July 15, 2008
Mom's 65th B-day Getaway (C.D.)
My brother and I treated my Mom with a weekend getaway to Brown Co. IN - just the 3 of us, for her 65th Birthday. We had a blast and I think we laughed the whole time we were there. My Mom is my very best friend. I can not imagine what I would ever do without her. She is the person who knows me and my secrets and still loves me. Evan and his Mamaw share a connection and I'm so thankful for the memories they are making together everyday. It has been such a blessing that he is able to stay with her during the work week. I loved our weekend.
P.S. something funny we saw in a store that I can't quit laughing over (I said I wouldn't post this and here I am, posting it) - "Some people skinny dip, we chunky dunk" OMG... isn't that the funniest thing.... Michael, your laughing, aren't you??? Every laugh seemed to have to do with chunky dunk...
P.S. something funny we saw in a store that I can't quit laughing over (I said I wouldn't post this and here I am, posting it) - "Some people skinny dip, we chunky dunk" OMG... isn't that the funniest thing.... Michael, your laughing, aren't you??? Every laugh seemed to have to do with chunky dunk...
Thursday, July 10, 2008
Advice Please...
I would like to request some advice on a situation I'm dealing with from all of you...
Evan is a rowdy, lively & crazy 4 year old who when it comes to feelings is ultra sensitive. I attribute this to his sheltered life - especially in the first few years before preschool. He is still mostly only around our immediate family and a few close friends other than during school that he started this year.
Evan is very sensitive of me, his Daddy and his Mamaw. We are his. He is known to get mad it me if I look at a picture of another kiddo and say, "awwhhh." He pouts and asks me if I like them more than him. We have had many long conversations about this and how it isn't nice and that I'm always his Mommy and he is always my boy and how much we Love him. It never seems to help.
If you are Evan's friend, you are his friend always. He doesn't understand why you would ever be his friend today and then not want to play with him tomorrow. We were in a situation recently (if you are reading this and you were there, kids are kids and no hurt feelings. Just trying to get advice for my own kid to handle these situations better) where we were at the park with a big group of friends and acquaintances. One few of Evan's closest friends was there but for whatever reason was not wanting to play with him. I'm thinking that since they see him more they wanted to play with new kids or just the classic version of 3 is a crowd. I don't know. Evan could not understand this and wasted his park time running around after this friend asking, "why are you not playing with me?", "can I play with you?", "what's wrong?" He went on to get this kid's dad and said please tell him to play with me. The kids would be told to include Evan and then according to Evan run off once the adult was gone without him. Evan cried. He sat on the bench and cried. (I was in a meeting just outside the playground and had friends inside the playground watching him. I could see this going on but couldn't leave the meeting.)
Last night I wanted to talk to him about it. I told him that when someone isn't being nice or doesn't want to play to walk away, find someone else to play with or play by yourself. I also said that I'm sure had he done that, that these friends probably would have joined him eventually. That because he cried it turned into a game for them. That kids will think he is a crybaby if he does this. Evan got so upset with me. Told me that I don't understand him. He said he is not a normal boy who can walk away (where did he get that?).
I'm so not this way and almost feel like maybe I'm being cruel trying to get him to be tough when it comes to feelings in public. But... I hate to see him being the kid running, begging for someone to play with him.
Advice?
Evan is a rowdy, lively & crazy 4 year old who when it comes to feelings is ultra sensitive. I attribute this to his sheltered life - especially in the first few years before preschool. He is still mostly only around our immediate family and a few close friends other than during school that he started this year.
Evan is very sensitive of me, his Daddy and his Mamaw. We are his. He is known to get mad it me if I look at a picture of another kiddo and say, "awwhhh." He pouts and asks me if I like them more than him. We have had many long conversations about this and how it isn't nice and that I'm always his Mommy and he is always my boy and how much we Love him. It never seems to help.
If you are Evan's friend, you are his friend always. He doesn't understand why you would ever be his friend today and then not want to play with him tomorrow. We were in a situation recently (if you are reading this and you were there, kids are kids and no hurt feelings. Just trying to get advice for my own kid to handle these situations better) where we were at the park with a big group of friends and acquaintances. One few of Evan's closest friends was there but for whatever reason was not wanting to play with him. I'm thinking that since they see him more they wanted to play with new kids or just the classic version of 3 is a crowd. I don't know. Evan could not understand this and wasted his park time running around after this friend asking, "why are you not playing with me?", "can I play with you?", "what's wrong?" He went on to get this kid's dad and said please tell him to play with me. The kids would be told to include Evan and then according to Evan run off once the adult was gone without him. Evan cried. He sat on the bench and cried. (I was in a meeting just outside the playground and had friends inside the playground watching him. I could see this going on but couldn't leave the meeting.)
Last night I wanted to talk to him about it. I told him that when someone isn't being nice or doesn't want to play to walk away, find someone else to play with or play by yourself. I also said that I'm sure had he done that, that these friends probably would have joined him eventually. That because he cried it turned into a game for them. That kids will think he is a crybaby if he does this. Evan got so upset with me. Told me that I don't understand him. He said he is not a normal boy who can walk away (where did he get that?).
I'm so not this way and almost feel like maybe I'm being cruel trying to get him to be tough when it comes to feelings in public. But... I hate to see him being the kid running, begging for someone to play with him.
Advice?
Wednesday, July 09, 2008
Sneak Peak
We have had our first meeting and are starting our fundraising season for our local AHA Heart Walk, which will be on Sept. 27th. We were missing a handle of families last night but... isn't this wonderful - all these beautiful children together for a cause. We are excited!!!
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