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.
Tuesday, February 07, 2006
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.