Move to a twin bed or not???

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!!!

Team Bravehearts

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!!!

Easter

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.

Pic's of Evan Post Cath.

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.

We are Home!!!

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!

Tommorow's Cath.

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!

DiGeorge Test is Negative!

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.

Post Synagis and Pre Cath Celebration

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.

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.

Synagis Shots

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.

DiGeorge Test

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.

Specialist

Well, yesterday was our appointment with the specialist that is going to be doing Evan's cath. The specialist is located at the cardio office that Evan was a patient of when he was born. Visiting there yesterday reminded us of why we switched offices. This office makes things so hectic and anxious! We were there from 9:30-2:00 and we would have been at Dr. McOmber's for an 1 1/2 hr. for the same things!!! Anyway, I'm trying to remember that I'm thankful for them and their expertise! We had x-rays and that was the best x-ray tech we have ever had at Kosairs! She did so good with Evan, let him sit up instead of laying down and was just great, she said ask for the short lady and we will get her. After x-ray we hiked over to the cardio office where we waited and waited and waited. Finally they did EKG, blood pressure and sats, which were all good. Then another nurse came and did the echo, nothing like when Dr. McOmber does it, Evan cried through the whole thing. Then we waited and waited some more. Dr. Recto finally came in and he was nice and explained the procedure using a little mesh wire tube called a stent which they will insert through Evan's groin in a catheter tube and lead up to his pulmonary artery. Once the stent is in the pulmonary artery they will put a balloon in the cath and into the stent and open it up to the needed opening. Dr. Recto seemed very confident that this could work and that even if the artery is long in the narrowed spot they have even used two stents back to back to open a longer narrowed artery. He also asked if Evan has ever been tested for DiGeorge Syndrome. The reason he asked was because of Evan's eyes, Evan has ptosis of the eyelids. The first reaction was WHAT??!! The doctor is going to call and see if Evan was ever tested and if not he is going to do the test during the cath. This is the first time Dr. Recto has ever met Evan so, I'm not mad that he mentioned it, it is his job. Although Evan is advanced and doesn't show signs of this, I'm anxious awaiting the results of this. Evan is very bright and ahead of most children is age, only 25 mths. and already saying all of his ABC's, counts to 12, sings all kinds of songs and amazes all of us with his brightness and wit. However, I know that DeGeorge and Tetralogy of Fallot often go hand in hand and that is a fact. I'm ready to get this cath over with and start letting Evan just be a little boy again.

Specialist Appointment Tomorrow

Tomorrow is our appointment with the balloon angio specialist, Dr. Recto. This is going to make for a very long day, for Evan and for us. We will start at Kosair's with x-rays, always traumatic for us, I wish the techs there would try to put themselves in the parents shoes. They always upset me, making me hold him down while they figure out the machine, etc. I'm hoping that tomorrow we have a good experience in x-ray! Then off through the pedways to the cardio office. This is the office Evan was referred to when he was born, we have since switched cardio's, not for any lack of knowledge reason but, personally, we just love Dr. McOmber. Evan just loves his heart doc and actually likes seeing him. These doctors are very qualified and as stated above specialist in the balloon angio field so that is where we are going b/c we want Evan to have the best docs! They do things very different at this office, I think we are just used to the laid back and loving atmosphere at Dr. McOmber's. These doctors get it done and get it done right the first time even if that means restraints, if you know what I mean!! Anyway, I'm anxious about seeing them all again tomorrow and what they have to say about Evan's upcoming cath. Sometimes you go in there thinking things are great and leave crying and then sometimes you think there is a problem and there are none. Evan had some kind of virus last week and ran a fever for two days, ever since I think his lips have looked a bit flushed. He also has taken extra long naps the last few days, I guess this virus just wore him out a bit. It will ease my mind after the echo is done and they look it over. We are ready to get this going and to be a little more normal again.

An update concerning the Ventilation Perfusion Scan, we were waiting on a date for the cath. from the specialist so we could send it all in one. Dr. McOmber called last Mon. night and said that, the results were not what he expected but that he was not totally surprised. A perfect Scan would show 50% pressure to the right side of the heart and 50% to the left. Evan's scan was 85% to the right and 15% to the left (side with the narrowed pulmonary artery.) They said that Evan was not in immediate danger but that the cath. needed to be done soon. The specialist, Dr. Recto, called Thur. and said that we would need to have a pre-consult in his office on Mar. 30th and that the first cath. appt. he had with his team was on April 12th. Evan will be the first cath. that day so we plan on being there early. Dr. Recto still feels that there is a chance that he can perform the balloon angio and fix the narrowed artery without having to go on to another open heart. We are to be prepared to spend the night on the day of the cath. and have another scan done the next day to prove the angio worked and that the pressures are closer to normal afterwards. Continue to pray that they can fix the problem in the cath. lab. Thanks for all your support during this time. We are looking forward to going back to normal. Evan definately is ready, always asking to go to a friends to play or go to church, we feel bad telling him no but, want to keep him well. He caught croup from the hospital when we were there for the scan and ran a fever for about 5 days, he seems to be completely over that now. Thanks again for all the prayers!

Feb. 7th 2006
I had just received a call from Dr. McOmber saying that they were cancelling the heart cath. that was scheduled for Thur. The reason was that he met with the balloon angio spec. Dr. Recto and that he felt he did not want to just be on stand by the day of the cath. but after reviewing all of Evan's echo's that the balloon might just work, possibly with stents and wanted to do the cath. with Dr. McOmber. Dr. Recto also wanted another test to be performed before the cath., Venitaltion Perfusion Scan (sp). This is a radioactive test where radioactive material is injected into the blood flow and radioactive gas is breathed into the lungs and then a machine reads this information to test the pressure between the left and right side of the heart. He said that everyone's pressure should be 50-50 and that he know's Evan's is not that, but that it would be helpful to know the pressure comparison and see how his heart is compensating. Dr. McOmber said that this has increased the chances of Evan not having to have another Open Heart. Keep Praying!!! We will not know the date of the cath. until after this test on Fri. We will keep everyone informed.

Jan. 23rd 2006
We just receieved the call from Evan's cardio and the heart cath. is scheduled for the morning of Feb. 9th. Dr. McOmber presented Evan to the heart board here in Louisville and they all agreed that now is the time to do something about this narrowed pulmonary artery, while Evan's heart is in such good condition. The plan will be for Dr. McOmber to do the cath and take measurements & gradients of the artery in question and that if it is smaller than they expected, he would call in the specialists, Dr. Recto to preform the balloon angioplasty. If this is the case and they can intervene in the lab we will stay overnight and go home on the 10th. If Dr. McOmber takes measurements and the artery is too long to do anything in the lab, we will go home that same day and they will schedule surgery. Again, please join us in praying that it does not go beyond the cath lab and that God will continue to work miracles in Evan's life. Thanks for all of your support and prayers and we will keep everyone informed.

Dec. 1st 2006
What a day. As most of you already know, yesterday Evan had a check up with his cardio Dr., Dr. McOmber. The results of yesterdays checkups were not as well as we would have hoped. The artery that has been an issue ever since Evan's last surgery is still narrowed, as we have known. Dr. McOmber was hoping that this artery would begin to grow as the other arteries have and was trying to give it a chance to do so on its own and had informed us in the past that they would give it about a year and then if it hadn't grown had hoped they could go through a heart catherization and open it with balloon angioplasty. After yesterdays echo Dr. McOmber he said the part of the artery that is narrowed is longer than expected and that he didn't feel that it could be done in the cath lab. They are meeting today with the heart board to go over yesterdays echo and will be calling with their findings sometime today or Monday. Dr. McOmber told us that he expected they would schedule a heart catherization to be done in February and that if the part of the artery that was narrowed was short enough they would go ahead and balloon angioplasty it open and if it was as long as expected they would then schedule another open heart surgery for around March. This news was devestating but, we know that in order to keep Evan in good health it is required. Dr. McOmber reassured us that if it went to surgery that it was not as complicated as the first one and that although they would have to go in through chest they would not have to open the heart to widen this artery but, that the surgery would be long because of scar tissue. Please join us in praying that it does not go beyond the cath lab and that God will continue to work miracles in Evan's life. Thanks for all of your support and prayers and we will keep everyone informed.

Oct. 28th 2005
They called and said Evan was going to have to get synagis shots this season again, we have already started them and I feel horrible when we have to go. Since Evan is over 30 lbs. he has to get 3 shots now. This is really hard, the appt.'s are really long and Evan cries and cries, I really will be glad when April is over, I don't think he will ever have to do this again. Evan has had synagis shots ever since he was born in the month's between Oct. - Apr.

Sept. 14th 2005
We had a cardio appt. today and got pretty good news. Dr. McOmber says that he is pleased and that Evan's heart is doing very well. He took him off of the Didge and Lasix - YEAH! He said that he will probably need a heart cath in the future b/c of the narrowed pulmonary artery and eventually for the valve but, he also said that he did not see surgery again and that is a relief! We are so blessed everyday with our little miracle and know that GOD is going to take care of Evan as he has done the past 18 mo. We don't have to go back until Thanksgiving.

Oct. 26th 2004
Evan's first Open Heart was scheduled for Oct. 26th, Eric's 31st B-Day. I was worried and knew I couldn't have handled that on my B-Day but, Eric said it would be the best present ever. The day before we spent at Kosair's having blood work and test ran to prepare for the surgery and to insure Evan was well enough to go through it. We also had our first meeting with Evan's surgeon, Dr. Austin. Dr. Austin was kind and explained what they planned to do the next day and we were sent home. I can't explain our feelings that night, it was close to Halloween so we let Evan dress up in a pumpkin outfit and carved a pumpkin and took lots and lots of pictures. I remember taking pictures of his chest wanting him to be able to see pics someday of it without the scar. We had to be there at 6:00 and they took him at 7:30. That was the hardest part of this morning for us and then the wait. Dr. Austin said that after he put a mask on Evan, he rocked Evan to sleep and then started his repair. They came out at about 11:00 and told me that it was over and that everything had went as planned! It was 2:00 before we got to see him! Tubes and wires from everywhere. My knees went weak. Evan was resting on the vent, and we kept reminding ourselves that tomorrow is a new day! The next day, they took him off the vent and at first he was doing so well, sats at 100%. They had to keep suctioning him to keep the fluid off and he started getting very upset. Twisting and turning off the table. They had to give him more pain meds and then he just quit responding. They put Evan on heliox and were threatning to put him back on the vent when all of a sudden Evan sat up and started coughing. I stayed in bed with Evan for about 12 hours that day. After he coughed he started making a turn around and the next day he seemed better. A nurse Kim worked with him all night getting Evan to cough. Dr. Sullivan was great she was so understanding and kind to Evan and to us. The that 2nd night they moved us to a regular room on the west side out of ccu. The nurses do not come around a lot and that made him a little more comfortable but when that door opens he knows that it is going to be something he does not like. They woke him up all through the night and took him to x ray every morning at 5:00, Evan hated x ray. He tried to eat but, the medicine makes his tummy upset. They say when Evan can keep food down we can go home. The next day though he got sick again so, we are going to stay until Sun. at least. Evan does so much better each day, even laughing and playing today. He loves to go on rides in the red wagon, we will have to get him one soon. Evan began eating better Sat., we just have to water down his formula and the dr. said he can have table food so, he kinda likes that. We let him sleep with mommy and we watch tv together. He doesn't like when the nurses come in and waves bye bye when they walk into the room. Hopefully we can go home tomorrow. It is Sun., Nov. 1st and we are going home!!! We video taped the ride home, Evan was so excited to get out of the hospital, practically talked the whole ride home. When we got there he just played and played. Grandma is going to come stay and help me because Eric has to go back to work tomorrow. We are so glad to be back and to start the road of recovery at home for Evan. His follow up appt. with the cardio dr. said Evans repair looks well and his scar, they took the stiches out of his chest tube hole and he didn't even flench. Evan really hated xray, hopefully he won't have to do that many more times. They will keep a close eye on Evan though just to make sure things continue to go well. They were pleased with his progress. They are afraid he might have a blood clot in his leg where they did the heart cath. so, they are going to do a ultrasound tomorrow and see what they find. The ultrasound came back okay and no blood clots so now we can really focus on healing.

Sept. 9th 2004
Evan's first heart catherization was on Sept. 9th 2004. We were so scared to hand Evan over but, the procedure didn't take very long. We got to the hospital at 7:00 that morning and around 9:00 they let us carry him to the cath. lab room and the nurses took him from there. We sat with a few family members and friends in the lobby. They told us they would correspond through the procedure by calling us on the phone in the lobby. Everytime that phone rang I would get really tense, (Is that my baby, is he okay???) I wouldn't answer it so, Eric got that job. It was probably 2 hours when they told us it was over and to come to the lab for the results. There was nothing that we hadn't already been told, kind of just a confirmation on everything for the doctors I suppose. Once we were able to see Evan he cried and cried and ended up making himself sick from crying and probably drinking a little to much too soon. We went home that evening and by the next morning you would have never known he had gone through that the day before.

Feb. 6th 2004
Evan was born on February 6th, 2004 at 2:15am. He weighed 9lbs. 6oz. and was 19 inches long. Evan received a 10 on his Agpar and we were so happy he was finally here and healthy. In the early morning hours nurses came to take Evan to the nursery for his 1st morning consultation by his pediatrician. He was gone a lot longer than the nurses had told us and we already had a visitor so, Eric went to find out how much longer they would have him. Eric was gone forever because I was still in Labor and Delivery and the nursery was on the other side of the hospital. The minute Eric came back into the room and I saw his face I knew something was wrong. He said they were taking him to the NICU that they were running some tests because they thought he might have an infection and needed antibiotics. I immediately wanted to be with my baby. I was wheeled to the opposite side of the hospital where I found my little one hooked up to machines and IV and doctors who were whispering. We asked what was wrong but, they said a specialist would be in to talk to us, we kept demanding that we wanted to know so finally the doctor turned and said, "Your son has been born with an Congenital Heart Defect known as Tetralogy of Fallot." We had never heard of this and we were confused and devestated. The specialist came and among all the beeps and machines tried to explain the condition, one thing I remember from that conversation was that, "this can be fixed." We hung to that hope. Evan was transferred to Kosair and I checked out and went to be with him. We spent five days at Kosair's NICU under monitoring and evaluation. That was the beginning of our little Braveheart's journey.

Cath. cancelled/Vent. Perfusion Scheduled

I just received a call from Dr. McOmber saying that they were cancelling the heart cath. that was scheduled for Thur. The reason was that he met with the balloon angio spec. Dr. Recto and that he felt he did not want to just be on stand by the day of the cath. but after reviewing all of Evan's echo's that the balloon might just work, possibly with stents and wanted to do the cath. with Dr. McOmber. Dr. Recto also wanted another test to be performed before the cath., Venitaltion Perfusion Scan (sp). This is a radioactive test where radioactive material is injected into the blood flow and radioactive gas is breathed into the lungs and then a machine reads this information to test the pressure between the left and right side of the heart. He said that everyone's pressure should be 50-50 and that he know's Evan's is not that, but that it would be helpful to know the pressure comparison and see how his heart is compensating. Dr. McOmber said that this has increased the chances of Evan not having to have another Open Heart. Keep Praying!!! We will not know the date of the cath. until after this test on Fri. We will keep everyone informed.

Heart Cath. Scheduled

We just receieved the call from Evan's cardio and the heart cath. is scheduled for the morning of Feb. 9th. Dr. McOmber presented Evan to the heart board here in Louisville and they all agreed that now is the time to do something about this narrowed pulmonary artery, while Evan's heart is in such good condition. The plan will be for Dr. McOmber to do the cath and take measurements & gradients of the artery in question and that if it is smaller than they expected, he would call in the specialists, Dr. Recto to preform the balloon angioplasty. If this is the case and they can intervene in the lab we will stay overnight and go home on the 10th. If Dr. McOmber takes measurements and the artery is too long to do anything in the lab, we will go home that same day and they will schedule surgery. Again, please join us in praying that it does not go beyond the cath lab and that God will continue to work miracles in Evan's life. Thanks for all of your support and prayers and we will keep everyone informed.

Results of Check Up

What a day. As most of you already know, yesterday Evan had a check up with his cardio Dr., Dr. McOmber. The results of yesterdays checkups were not as well as we would have hoped. The artery that has been an issue ever since Evan's last surgery is still narrowed, as we have known. Dr. McOmber was hoping that this artery would begin to grow as the other arteries have and was trying to give it a chance to do so on its own and had informed us in the past that they would give it about a year and then if it hadn't grown had hoped they could go through a heart catherization and open it with balloon angioplasty. After yesterdays echo Dr. McOmber he said the part of the artery that is narrowed is longer than expected and that he didn't feel that it could be done in the cath lab. They are meeting today with the heart board to go over yesterdays echo and will be calling with their findings sometime today or Monday. Dr. McOmber told us that he expected they would schedule a heart catherization to be done in February and that if the part of the artery that was narrowed was short enough they would go ahead and balloon angioplasty it open and if it was as long as expected they would then schedule another open heart surgery for around March. This news was devestating but, we know that in order to keep Evan in good health it is required. Dr. McOmber reassured us that if it went to surgery that it was not as complicated as the first one and that although they would have to go in through chest they would not have to open the heart to widen this artery but, that the surgery would be long because of scar tissue. Please join us in praying that it does not go beyond the cath lab and that God will continue to work miracles in Evan's life. Thanks for all of your support and prayers and we will keep everyone informed.

RSV Shots

They called and said Evan was going to have to get synagis shots this season again, we have already started them and I feel horrible when we have to go. Since Evan is over 30 lbs. he has to get 3 shots now. This is really hard, the appt.'s are really long and Evan cries and cries, I really will be glad when April is over, I don't think he will ever have to do this again. Evan has had synagis shots ever since he was born in the month's between Oct. - Apr.

Discontinue Meds!

We had a cardio appt. today and got pretty good news. Dr. McOmber says that he is pleased and that Evan's heart is doing very well. He took him off of the Didge and Lasix - YEAH! He said that he will probably need a heart cath in the future b/c of the narrowed pulmonary artery and eventually for the valve but, he also said that he did not see surgery again and that is a relief! We are so blessed everyday with our little miracle and know that GOD is going to take care of Evan as he has done the past 18 mo. We don't have to go back until Thanksgiving.

Journal of Evan's Surgery

Evan's first Open Heart was scheduled for Oct. 26th, Eric's 31st B-Day. I was worried and knew I couldn't have handled that on my B-Day but, Eric said it would be the best present ever. The day before we spent at Kosair's having blood work and tests ran to prepare for the surgery and to be sure Evan was well enough to go through it. We also had our first meeting with Evan's surgeon, Dr. Austin. Dr. Austin was kind and explained what they planned to do the next day and we were sent home. I can't explain our feelings that night, it was close to Halloween so we let Evan dress up in a pumpkin outfit and carved a pumpkin and took lots and lots of pictures. I remember taking pictures of his chest wanting him to be able to see pics someday of it without the scar. We had to be there at 6:00 and they took him at 7:30. That was the hardest part of this morning for us and then the wait. Dr. Austin said that after he put a mask on Evan, he rocked Evan to sleep and then started his repair. They came out at about 11:00 and told me that it was over and that everything had went as planned! It was 2:00 before we got to see him! Tubes and wires from everywhere. My knees went weak. Evan was resting on the vent, and we kept reminding ourselves that tomorrow is a new day! The next day, they took him off the vent and at first he was doing so well, sats at 100%. They had to keep suctioning him to keep the fluid off and he started getting very upset. Twisting and turning off the table. They had to give him more pain meds and then he just quit responding. They put Evan on heliox and were threatning to put him back on the vent when all of a sudden Evan sat up and started coughing. I stayed in bed with Evan for about 12 hours that day. After he coughed he started making a turn around for the better and the next day he seemed lots better. A nurse Kim worked with him all night getting Evan to cough. Dr. Sullivan , the resident, was great she was so understanding and kind to Evan and to us. Then the 2nd night they moved us to a regular room on the west side out of CCU. The nurses do not come around a lot and that made him a little more comfortable but when that door opens he knows that it is going to be something he does not like. They woke him up all through the night and took him to x ray every morning at 5:00, Evan hated x ray. He tried to eat but, the medicine makes his tummy upset. They say when Evan can keep food down we can go home. The next day though he got sick again so, we are going to stay until Sun. at least. Evan does so much better each day, even laughing and playing by Fri. He loves to go on rides in the red wagon, we will have to get him one soon. Evan began eating better Sat., we just have to water down his formula and the dr. said he can have table food so, he kinda likes that. We let him sleep with mommy and we watch tv together. He doesn't like when the nurses come in and he waves bye bye when they walk into the room. Hopefully we can go home tomorrow. It is Sun., Nov. 1st and we are going home!!! We video taped the ride home, Evan was so excited to get out of the hospital, practically talked the whole ride home. When we got there he just played and played. Grandma is going to come stay and help me because Eric has to go back to work tomorrow. We are so glad to be back and to start the road of recovery at home for Evan. His follow up appt. with the cardio dr. said Evans repair looks well and his scar, they took the stiches out of his chest tube hole and he didn't even flinch. Evan really hated xray, hopefully he won't have to do that many more times. They will keep a close eye on Evan though just to make sure things continue to go well. They were pleased with his progress. They are afraid he might have a blood clot in his leg where they did the heart cath. so, they are going to do a ultrasound tomorrow and see what they find. The ultrasound came back okay and no blood clots so now we can really focus on healing.