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.

Evan's 1st Cath.

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.

Our Little Braveheart

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.