Wednesday, April 26, 2006
Nothing much going on right now, things have been pretty quiet this past week. Last Thur.'s ballgame got rained out so Team Bravehearts didn't get to make their appearance. Evan was just as happy to go eat at Cracker Barrel, although he likes the store more than the restaurant, we always have to pick up some kind of toy/candy to keep him seated. Eating out is really tabboo for us still. Evan is so busy, he just can't stand to sit still and we always feel like we've ruined everyone's dinner around us. We've become more of a Golden Corral family than an O'Charley's one, if you can't get your food as soon as you sit down than Evan has waited too long and you might as well forget it. Evan is still having trouble sleeping, not sure if it is from being in the hospital or if it is just Evan. He has never been a good sleeper and when he was first born I was terrified to have him out of my sight and he slept in a co-sleeper bassinet in our room hooked to our bed for the first 4 months and even when we did move him to his crib in his room, if he cried I would go get him. For the last year I have gotten him to sleep in our bed and then once he is asleep Eric moves him to his crib and he will sleep there for about 1/2 the night from 9:00-2:00 and then he cries for us to move him to the chouch (couch), so off him and Eric go to the couch for the rest of the night 2:00-6:30. In all that's about 9 1/2 hrs. of sleep at night and then he usually takes a 2 hr. nap every afternoon. I'm not sure what to do at this point to make him a better sleeper. Everyone always jokes with me about not calling after 9 b/c even the slightest creek will wake him up, I'm not kidding if you step on part of the floor that creeks down the hall Evan will be wide awake! I'm sure it is my fault he is such a light sleeper but, when the doctor's scared the daylights out of me when he was born I just did the best I could and when I got him to sleep I just wanted everyone to be quiet to be sure not to wake him. He seems to sleep sound in our bed or on the couch so, we are thinking about getting him a big boy bed and see if that helps. Not sure if it is too early for that or not but, he seems to not sleep good in his crib. Advice on when other's moved their kiddos to twin bed's would be appreciated. Yesterday was my brother's birthday, Evan calls him Munc (Uncle Michael) he knows his name but when he first started talking, he couldn't say it and decided on Munc and now if you say his name Evan will say, "Uncle Michael's name is Munc." Happy Birthday Munc!!!
Thursday, April 20, 2006
Today our local baseball team, the Louisville Riverbats are having an evening of appreciation for Kentuckiana Heart Walk's MVPs of 2005. Evan was a member of Team Bravehearts which included 2 other little boy's here locally that were also born with TOF and a little girl who was born with VSD and an ASD that I met through work. I feel so proud of our little team and what these other families have come to mean to me. It's weird to think that we would have never met (probably) if it hadn't been for our little boys being born with TOF. Being able to call them or meeting them for lunch or just being a part of their lives by going to b-day parties is so meaningful as we celebrate the lives of our amazing little boys. We have all been through so much together and their friendship means so very much to me. Looking forward to another Heart Walk in Sept. 2006. Way to go MVPs of team Bravehearts, Friends for Life!!!
Tuesday, April 18, 2006
I know ~ I'm playing catch up! We were able to take Evan to see the Easter bunny Fri. afternoon at the local mall. He ran right up to him and said, "Hippity, Hoppity, please bring me an Easter basket!" As you can tell from that remark we have been reading a lot of Easter books! Our best friends came over Sat. with their little boy and girl and we painted and hid eggs for the boys, they had a blast. Sun. was very hectic as holidays always are for us. But, we had a great time seeing everyone and I will remember this Easter as one that was rejoiceful and at ease.
Just thought I would post some pictures of Evan from the cath. and give a more rested update. As said before they were able to stent the left pulmonary artery. This was such a major success, the doctors were all thrilled with the outcome of the cath. During the cath. they noticed that his valve is leaking more than expected, the ring holding his valve had to be cut during his first surgery to relieve it which caused a leaky valve. They said the right side of his heart is still enlarged and the two reasons for that were 1.) The left pulmonary artery stenosis, which they relieved and 2.) the leaky valve. They hoped that with being able to stent the left pulmonary artery and putting Evan back on Digoxin they could put off needing a valve replacement as long as possible. They could not give us any time range other than it could be 1 yr. or it could be 10 yrs. and the longer the better. It all kinda depends on how much the stent and Digoxin helps relieve the right side of his heart. We were told that we need to start treating Evan like a normal little boy so that when the time comes we will see signs of tiredness etc. This is exciting and new for us, we have always been under such restrictions and I'm going to have to work really hard to not worry so much. Michael (see Sophia's link to the right) posted a special reminder the other day to, in short, "make room for joy." Pray for Sophia as her cath. did not go so well and they are facing more surgery in the near future.
Thursday, April 13, 2006
We are home and boy is Evan happy about that. The cath was successful, the cardio said that if they could have picked an outcome they would have picked the one we were given. The right pulmonary artery was 8mm and the left (the side that was narrowed) was only apprx. 3mm. They used a stent and made the left side almost 8mm. It took about 3.5 hrs. for them to complete the procedure. Evan did really well. When we first got there he didn't know where we were and asked if we were at a party, little did he know what the day held for him. After the cardio explained everything he did in the lab, he informed us that is was procedural for cath. patients who are admitted to stay in ICU. So, we spent one very long day in ICU, oh the memories. We were right next to the nurses station so all in all from about 12:30 yesterday afternoon until we left at noon today Evan slept 4 hrs. the rest of the time we spent trying to keep Evan still. He let everyone who came in the room know he did not want to be there. He begged for us to take him home and thanked the doctor for giving him walking papers! Thanks to all of you who prayed for Evan!!! Evan will be on baby asprin for blood thinning for 3 months and then was also put back on digoxin because of his leaky valve. All in all everything went really well and we are really, really glad to be home!
Tuesday, April 11, 2006
We will be going in tommorow morning at 7:00 to Kosair Childrens Hospital for Evan's cath. Dr. Recto and his team will be performing the cath. They plan to insert the cath. tube into a vein in his groin and then lead a stent into the pulmonary artery and once that is in place they will insert a balloon to widen the stent. Please pray for Evan, Dr. Recto and his team tomorrow. Also that this intervention in the cath. lab will work as the only option we have been given if this fails is another open heart. I will post an update tommorow when things settle down. They told us to plan to stay overnight if they are able to intervene. I'm anxious about tomorrow and just ready for it to be over. I know that Evan is in good hands and that GOD is going to take care of him. Thank all of you for your support and prayers, we truly appreciate it!
Monday, April 10, 2006
Dr. Meiners looked in Evan's chart last Fri. and saw where Evan had the FISH test for chormosone abnormalities when he was transferred to Kosair the day his was born. The paper said Evan had been tested, but did not give the results. Dr. Meiner's called the hospital today and just called and said that a chromosone test was completed with the results of no chromosone abnormalities found and a specific test done for DiGeorge 22qll deletion and the results were, DiGeorge 22qll deletion not found. One less thing to worry about. Now we just worry about the cath. on Wed. and for the balloon angio with stent to do its wonders on that little pulmonary artery. GOD answers prayers, so please pray for us.
We didn't exactly skip when we left the doctor's after Evan's last synagis shot. He cried the whole way there and begged me not to take him to see Dr. Meiners. Mamaw and I made the mistake of mentioning Dr. Meiner's name before we left and from then on Evan knew exactly where we were going and why and even though we were telling him that this was the last time, he wasn't hearing it and pleaded for me to turn around and go home. I'm so glad that those nasty shots are behind us. I know they protected him but, it was hard seeing him cry like that every month. Evan loves movies so, we figured what a better time than now to take him to his first one so, yesterday we went to see Ice Age II. Evan thinks that scrat is the funniest thing chasing after his acorn, his little laughs were heard above everyone else in the theatre. He had a blast and ate his fair share of popcorn. He was really good for the most part, up and down out of his chair and doing his little dances whenever music was played. However, the last half hour was spent trying to keep him from running up and down the steps, he just couldn't keep still. Thankfully it was a matinee and there were not very many people in the theatre and those who were there were chasing their kiddos too! We had a good time and Evan was still talking about his first movie when I dropped him off at Mamaw's this morning.
Friday, April 07, 2006
I'm requesting anyone that is reading this to send up a prayer for Nova's family, see a link to his blog to the right. Nova passed away yesterday afternoon. I have checked on Nova every morning through his mom's blog site dedicated to him for the last several weeks. Nova had gone through so much, I can't imagine. Again, please pray for comfort for his family.
Wednesday, April 05, 2006
This Friday is our last round of Synagis shots YIPEE!!!!!!!!! I know most people have no idea how happy I am about this or why I'm happy about this but believe me, I think we will throw a party Fri. night in celebration!!! Evan has had synagis shots from the time he was born from Oct.-Apr. so in all that is a total 17 months of having to get shots. When he was born he only had to have 1 shot each month but it is 1 shot for every 10 lbs. so by the next season when he was one he required 2 shots and this season he has required 3. These shots are muscle shots and are very painful. This season Evan is big enough that he knows what is going on and makes sure he lets myself and the nurses know he doesn't like it. He begs the nurse not to give him boo boo's and once myself and the other nurse restrain him, he begins begging for it to be the last one. When it is over he politely tells the nurse "Thank-You" and then asks for a blue sucker. Usually, we both leave with a tear streaked face. Tomorrow I think I will skip out of the office and sing a song.
Tuesday, April 04, 2006
Dr. McOmber just called. He cannot find in Evan's files if he was ever tested for DiGeorge. He apologized saying that he had assumed it had already been done as he tests his patients upon diagnosis with Tetralogy and had always figured that our old office had already done the testing. He is going to look into it more and see if the file is at the hospital or not, says he will be surprised if he was never tested as it is so commonly linked with Tetralogy. He said that Evan is smart and doing well however, it is a possibility, and that we will wait for the results and not to worry until we are told he has it. Also to remember that a diagnosis doesn't change the fact that Evan is doing exceptionally well. He said that DiGeorge or CHARGE is not a syndrome that progressively gets worse although signs sometimes show once school starts like, problems with math, etc. I guess we'll just have to wait. Why can't next Wed. just be over with already? Sometimes I think the waiting kills you, once it is over with you can deal with the results but the waiting seems like the game we have been playing since Evan's birth. You hate to wish time away because he is so precious right here and now but, always seems like we are waiting for the next test or procedure. We just love our little boy and want the very best for him. We need strength to be thankful for our circumstances and realize that things could be much worse, which I know they could.