Home Sweet Home

Evan told the Dr.'s at preop and all his appointments that he was going home in 3 days and 3 days postop that is exactly what we did. This time was different. Evan did amazing and was the best patient. He remembered how it was before so there wasn't any telling him this will only hurt a little. On Tue. he was ready to be extubated about 2 hours before it actually happened because his blood gases kept coming back high. He kept squeezing my hand and pointing to his mouth and mouthing OUT. It hurt to see him do that over and over and have to keep telling him that in a minute they will. He had little tears just streaming down his face and would ask again. When the guy did finally extubate him Evan immediatly said, "thank you." The guy said that made his day. After that the night was spent begging for drinks and only being allowed to suck what water he could from a sponge. He was much happier when they came in at 4 the next morning and gave him a drink. Rounds started the next morning and I believe he didn't remember the 15 or so Dr.'s and nurses that come in to his room during rounds. His little lips were just trembling. Once most of them left he told his cardio in a quiet, scared little voice, "thank you for fixing my heart." Bless his little sweet self. Then the morning started to get busy with pacer wires removed, central and arterial lines and the foley cath. He was so anxious. Once we got to a room a friend reminded us of some of the things the child life group has and they had our room ready with a calming fishy light and this light that put stars and clouds on the ceiling. This helped him calm down quite a lot. He was worn out. He enjoyed short visits but seemed annoyed when anyone was there for long. Like I said, with his age I guess there was a lot more anxiety. The next day he was anxious from morning rounds when it was announced that chest tubes would be pulled that day until they were actually out. He felt much better after that and we went on a good walk. I forgot to mention that there was NO trouble peeing this time around. Since we had such issues last time we requesed that a urologist put in the foley cath and that made the difference. Once he got up he was done with his bed and spent the rest of the time in one of our chairs playing with one of the many toys he was given. On Friday morning at rounds the Dr.'s asked what Evan wanted to do that day and Evan said, "go home" and they said, "sounds good." We were packed and out of there by lunch time. Evan had been itching all day Thur. and Fri. and right before we left we noticed some bumps on his back. We weren't sure if it was the sheets and pillow cases causing his skin to react to their detergenct or the pain meds. On Friday night he seemed very bothered by the pain meds so we tried skipping a dose and have never gone back to taking them. We ask him often if he is iny pain and he assures us he feels fine. He is taking ibuprofen and lasix. They expect to stop the lasix on Thur at our postop apointment. When we got home we had a nice surprise of welcome home banners and confetti - Evan was so happy with that and actually cried happy tears to be home. Being home has been wonderful. The biggest issue we have had is to try to make Evan slow down and not do things that could hurt himself. He is ready to go... ready to play... ready to run and jump and go to school. He is ready for things to be back to normal and isn't happy that it isn't happening fast enough. So... that is where we are at. Enjoying being home and trying to make him happy with less active activities. Thank you everyone for your prayers... Evan amazed everyone and I know God protected him and brought him through this with flying colors. Thank you to our family for being there with us during his surgery and bringing us food and being understanding when Evan was and wasn't ready for company. Thank you to our friends who brought Evan goodies and us food. Other than dry cereal and jello the only things Evan ate while we were at the hospital was soup Mamaw brought and a ham and cheese sandwich that Shannon gave us from Jimmy John's. We feel so blessed to be this amazing little guys parents. Now... I've got to get back to keeping him busy - without jumping, pulling or rough play, lol.