Surgery was decided but no date yet...

Heart board was held last night and Evan was presented. That is all the information I really have as of now. Evan's Dr. is working without his partner this week and so his time is thin. Surgery was decided and he said he did tell them we needed it in time to get him back to school. We should be getting a call with a date soon and if it's in time to get him back to school it should be in the next 3-4 weeks. Evan goes between seeming to forget about it, to crying and having a hard time. As of last Tue. he seemed to have forgotten and hadn't asked anymore questions. Yesterday my Mom called (she keeps him during the summer) and said he hadn't been himself all day and didn't want to do anything. She said she was doing laundry and when she walked back into the room he was upset and said it was because the Dr.'s were talking about him and that he didn't want open heart that his heart felt fine. I left work and went and got him and he asked me if I knew yet and I told him no but to not be scared... that Dr. M will only do it if he thinks he has to and that if he does that God is always with him protecting him and that he has the best Dr.'s and that they will make sure he is okay. I took him to see Toy Story 3 last night just to keep our minds busy - it was so good. When we left Evan said "I'm never getting rid of blue puppy, bear or putchers." These are stuffed animals he has had since he was born. Today she called and said that he is following her everywhere... sat outside of the bathroom while she got ready this morning but, that as long as she is with him he at least is up for doing things - riding his bike, etc. I'm leaving early again today and taking him to the zoo. Say a prayer for our little guy... for him to feel the protection and security he needs from God and us as parents. Help us to know how to answer his questions. A friend recently showed a picture to me of a hospital surgery room with Jesus standing behind the Dr.'s. She had it framed and it was in their hospital room during their last stay. What a wonderful picture.

Waiting another week

Just wanted to post that we found out that Evan was not presented at heart board last night. I'm not sure of the reason yet... it usually means it was cancelled due to an emergency. So we wait another week...

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!

Croup and Teeth Grinding

Last Sunday night Evan started his croup cough. I knew by the sound of it that it was probably going to go into croup so I scheduled an appt. with the pedi on Mon. We went in and she agreed that whatever we wanted to call it - croup/reactive airway disease/asthma that it had started. She wanted him to do a breathing treatment in the office. We have done these many times in the past but not in the office in a long time. Evan struggles with reflux for many different reasons - something covering his nose and/or mouth, a smell, a texture, crying, whatever. When we do breathing treatments at home he asks for lots of breaks for a little sip of water. He can barely stand it but with the breaks we make it through. So... we are at the office and Evan starts panicking... he needs a drink - the nurse encourages him to continue and he starts to cry and starts choking - he needs a drink - the Dr. comes in and asks him to try to finish so she can see if its helping (I love his pedi) they were really trying to calm him down to no avail. He said I need a drink - none of you understand and then... the vomiting began. I don't know if I have ever seen Evan vomit that much and I've seen him do it a lot. Once it stopped we were moved to another room (thank God - Evan had boiled egg whites and cheese for lunch) and the Dr. said no more breathing treatments for Evan - we move to inhalers. He is doing much better with this and has in the past week become a pro at it. We started a steroid and 2 inhalers that day. We were told to come back Fri. for a recheck. This past Fri. we went in and although his breathing was better his allergies/sinuses seemed worse and making him still sound really junky. We were already on an allergy med and nasal spray. They checked his white blood cell count and it was high so we started an antibiotic. Evan again begged for no liquid meds so he was so happy with his new pills and inhalers! We are trying very agressively to get this all in order before Wed. which is the day for Evan's cath. We are going back today for another check to see if the antibiotic has helped him get back on track. He is still coughing but seems better to me.

Evan seems to be doing well. He talks about the cath here and there and asks how many more days. He has always been a teeth grinder in his sleep when things like this are bothering him. He has been grinding away every night since his last cardio appt. It is the strangest noise I have ever heard. So between coughing and grinding of teeth, Evan or I have not gotten much sleep. Say a prayer his white blood cell count is back to normal today.

See final picture for the American Heart Associations poster this year. I think it turned out just great!

Cath Date

I just got the call... Actually I got 2 calls...

They called and said they had gotten their first available appt. in the cath lab, and it was July 1st. She could tell I was upset and asked if I was okay... I told her I just really wished it was sooner so that our hopes of Evan's surgery being earlier and him getting to go back to school with everyone else would be more likely. She said she was sorry and that hopefully they could still work that out despite the late cath date. She called back within 2 minutes and said - I got a call as soon as we hung up with a cancellation of June 16th and I can put Evan down for it and its first case in the morning. I felt so relieved! Thank you God! I know that surgery could still come late enough in the summer that he can't go back to school on time but, the earlier date gives us a better chance at that being able to happen. I also hated that Evan would have another month to think about this cath. He has been struggling with this news and the sooner it is behind him the better. He is my brave boy! He brings tears to my eyes talking about it... "So Mom... Dr. said I didn't have to take versed if I didn't want - that we would just walk in the lab together and I could put on my own mask - I'm so glad I'm not taking versed. Mom... after the pictures Dr. sends them to Dr. A at heart board and then I have surgery..." Sigh... you can't lie to him - the truth is that's right - and why does my 6 year old know that here in Louisville they have heart board to discuss patients - sigh. I just keep telling him that, that might happen but to remember how well he did last time and that he will do that well again. We have had 3 kids recently in our heart support group have surgery and they have all done really well. I think this has helped Evan know that, that is usually the case. His best heart buddy is wearing a holter monitor today and broke down leaving the appointment after having it put on. He told his Mom, "I don't want a special heart, I want God to take it away. I still want to have a heart team and do the heart walk and games but I want to do it for other people, not me." What do you say? I had a hard day yesterday and I'm emotional today and angry and humble and blessed. So many emotions and I'm an adult. When Evan's busy he seems to be doing well... but you can definately tell he is worried if their is a quiet moment or if he is going to have to leave me for a while. He will say things like, E-Hold my hand Mommy. M-okay, are you okay E- yeah it is just dark outside. After a few moments he said E-Is it June yet Mommy, M-yes, today is June 1st. E- I wish it wasn't, I'm having a cath this month." Breaks my heart.

Sharing pictures from Mother's Day. We went to a really neat farm that serves lunch and dinner - almost like a Bed & Breakfast but there aren't any nightly accomodations. We had a wonderful day and I'm so thankful that God made me Evan's Mommy and for my Mom!