Our Brave Boy and Cath #5

Yesterdays cath went very easy and good. I was worried it would be cancelled all the way until we were walking to it because of his breathing issues. Thankfully, it wasn't. The anethesiologist did say that his uvula had some white patches on it but that it wouldn't cause harm to doing the cath but that if his throat was very sore post cath to call the pedi and get something for it. Evan said he did not want Versed and the cool anethsiologist said he was old enough to refuse it and Evan walked with no meds over to the lab and our cardio met us out in the hall and took Evan's hand... they walked off together - there were no tears. I was worried there would be tears once we left but the nurses and and Dr.s said that there was none. That he talked to the Dr. and the anethesiologist (who did magic tricks) and climbed up on the bed and was snoring seconds later. So glad that went so good and he had a good experience without Versed. They had a easy time gaining access to the vein in his right leg. That was such a wonderful first call compared to the call in 2008 that took forever to get access. They called within a half hour and said they had access and within another half hour they had taken measurements and pictures and close to 10:30 they were done. They showed us the pictures and explained what had happened.... There is a kink in the homograft just past the valve. Imagine the heart and then the valve connected to the heart and the artery connected to the valve. The heart sits under it all. Because of Evan's big growth spurt right after the surgery the heart grew quickly as well and pushed up causing the artery to kink just past the valve. He said he did wonder if they could stint it and called the interventionalist and they discussed the possibility... in the end though they agreed they thought it would be trading one problem for another. If they balloon or put a stent in just past the valve they will be pulling the valve open causing it to leak (which it is not doing) making the heart work harder, which makes the right ventricle grow and the heart become weak. He said this could buy us a year or so but that then we would be doing the surgery on a heart that was not in as good of shape as it would have been had they just gone ahead and done it. So... He said he was glad to see that the homograft was a success... Evan's body didn't cause it to narrow or reject it and it didn't calcify... it was a quick growth spurt that caused this not to last years. Other than the kink the donor was in great shape. Becauseo of this it leads him to believe another homograft would be the best option and hopefully without a growth spurt his expectations would be it should last until he is in his 20's with another to last for life or even possibly this being it. He said Evan's heart is in great shape. He will present it to the board on Mon. and he said of course they could have different opinions and they will let us know the action they think best. Our cardio said he believes we will have surgery and that it will happen in time to get Evan back to school on time. Evan did awesome... such an amazing kid... I'm so proud. He was an excellent patient... no whining or crying... a few tears but honest ones. He vomited in recovery and he cried a little then - not sobs, just tears. Every nurse and Dr. over his care today commented on his bravery and how good of a patient he is. Most of them came back once their part was over to check on him. He wanted to be quiet... wanted the lights low... didn't want to talk - didn't want the TV on. Didn't sleep much but was quiet and just wanted me to sit there and hold his hand. It was a long afternoon but he was good, quiet and did everything the nurses asked of him. When the last hour came along he began to be a little more happier... knowing the end was drawing near. They started removing his IV and his blood pressure cuff... by 4 he was talking and smiling and even got to ride out in a wheel chair... he thought he was big stuff. Last night he was mostly quiet but watching tv and smiling and talking some. Wanted to play nerf guns so he used the targets and practiced some. Today after lunch I can start removing the dressing and he wants this off now. It will take an hour or so in the shower I'm sure... they gave me a whole bottle of removal so hopefully I can make it painless as possible. Wish me luck with that!