Getting back to normal

Evan's cough ended up turning into pneumonia. His pedi, cardio and I agree it was just a combination of things. For one - he just had open heart surgery and there is always junk that needs coughing up after that. For two - it is allergy season and Evan always has a time with allergies and croup, it just usually isn't until Oct. For three - the combination of the two above - he just had open heart surgery and it hurts to cough so the junk stayed put and went into pneumonia. So... it's been lots of breathing treatments, steroids, inhalers and so on. Finally the coughing has ceased and he seems to be much better. We went to a follow-up appointment yesterday and they said he sounded much better and we could stop the breathing treatments - woohoo! His cardio checkup also went well and things look great so far, that was a relief. We have a followup with the surgeon on Oct. 1st. Evan is looking forward to this appointment in hopes that the surgeon says he can get back to the things he loves - riding his bike, Tae Kwon Do, recess and gym. Thankfully his school has been awesome and has let him go to art class during recess and do some fun stuff there so he doesn't feel punished that he isn't going outside. Evan also isn't able to carry his backpack so, either I have to walk him in school or someone else has to help him. Evan kind of feels a little like a kindergartner having his Mom walk him in when it is not the first day. One of his heart friends also goes to school with him and lives close so he offered to carry Evan's backpack into school. The first day I tried to snap a picture through my car window with tears in my eyes at what a cute sight that was. A heart friend helping out a heart friend. Too cute!!! His friends grandma said it looked like Caleb had lost a bet - loser has to carry my backpack into school for a month, lol. It is the cutest sight... Caleb is about 1/2 Evan's size. They are friends for life. Despite the pneumonia and thanks to a friend for free tickets, Evan got to enjoy his first UofL football game - he LOVED it! GO CARDS! He really loved that. Other than that Evan is loving school. I'm so thankful. His teacher said he jumped right back into things and didn't skip a beat! I can't believe boyfriends and girlfriends are already something 1st graders talk about! One day when my Mom was picking Evan up from school he told her he needed a wingman to talk to the girls for him and tell him what they said!!! He gives full reports everyday on what everyone did and who said what and who was on yellow and why. I love our talks - he talks my head off though! Oh something else he has always said that I haven't written down here is, "Mom... I need some water... ice cold." He always has to end that with ice cold. The last picture is of Evan's bestfriend and his little brother. They were pretending to be puppy dogs and little Jameson always has to do everything the big boys are doing. This past weekend marked 2 years that Jameson was with his forever family... we Love you Jameson!

Will you please say a prayer for our fellow Brave Heart member (see link to the right) Sarah. She has HLHS and had surgery this morning and is having some complications.

Back to Work/School

After a couple visits to the pedi and every 4 hour breathing treatments, inhalers and a course of antibiotics, Evan is feeling better. He was so disappointed when he started running a fever this past weekend, knowing it would delay going back to school. Thankfully the medicine kicked in and he was only a day later than planned. It felt so weird to be dropping him off at school. Other than short grocery visits we have been together for 5 weeks now. I stayed home his first day, just in case. He loved being back and had a really good day. He was super tired though. So today I started back to work... again it just feels so weird. I miss my little guy. I'm sure we will get in our routine again but right now I feel like I should still have him with me. It's hard to hand them over after just 3 weeks post-op. Hard. Enjoy the picture of his first day. I have one of he and his teacher but I'll have to ask permission I guess before I post that. Hope everyone is well.

School & Coughing

I don't think I would be cut out of home schooling. I'm ready to turn the teaching job back over to the teacher next week! I'm glad that Evan was able to keep caught up with his class though and won't be behind. Other than doing school work Evan has been playing away. He has loved that I let him turn my living room and kitchen into his Star War world. It helped letting him drag it all out and spread it around to play a little more calmly. We have also ventured out a little this week for lunch and hair cuts. He is looking handsome and ready for school. It's going to be hard to take him and drop him off this coming Tue. We have been together non stop for 4 weeks now and I think it will be harder on me than him! We had dinner with friends and he told them that he was ready for his first sleep over and a vacation from us, lol. The only concern with Evan has been coughing. Everything else seems to be healing and going well. He started coughing earlier this week and despite phone calls to the pedi and trying things it has gotten worse. We are headed in today for a check so hopefully it is just allergies. We appreciate the continued prayers. Thanks also to everyone who has sent cards, presents and goodies. It really makes his day.

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.

Post-op Day 3

We are going home!!!

Post-op Day 2

Evan had a good night. His oxygen sats have been better & his blood work is normal & no fever. Since the drainage in his chest tubes are down they are being removed today. I think Evan will feel much better once this happens. He did get up for a bit this morning.

Post-op Day

Evan was extubated at 6:30 last night - about 2 hrs past when he wanted to be. Last night was okay. Evan was very thirsty & not allowed to have anything until early this morning bc his bp was up, blood work a little high, oxygen a little low & having a couple p wave rhythm episodes. All of these resolved once pain was better controlled. Drs were all happy this morning at rounds & told Evan he was on his path to go home Friday. He thanked them for fixing his heart - how sweet is that? After that the morning got rough and Evan was anxious and in pain from all the commotion of losing his arterial & central lines. He also got rid of his pacer wires & foley cath. Guess what - he is peeing like a champ! Once we were moved to a room Evan has been resting much better. Here is to rest on 4 west!

Surgery Day

Update #4 -
Evan's surgery is complete! They used a cow jugular vein and valve. He is breathing and his heart it beating on its own in a regular rhythm. He hasn't needed any help with the pacer or anything like that. We are waiting to see him in ICU. Dr.'s were very pleased! Praise God!

Update #3 -
They just came in and said that he is off heart lung bypass. We will hear from the surgeon next once the chest tubes are in and he is closed and on his way to ICU.

Update #2 -
They just updated that Evan is on heart lung bypass and that Contegra has been chosen (bovine cow jugular vein and valve.) They said he is doing well. We are waiting to hear this has been completed and Evan is off the heart lung bypass.

Update #1 -
They had a hard time getting a central line started on Evan but were finally successful. They have started working through the scar tissue and are getting close to being through that. They will come back with another update once they are through that and he is on heart lung bypass.

Evan had a hard morning... It started yesterday when we were at preop. We were talking about him not wanting to take Versed. He said he wanted to walk into the operating room. The anesthesiologist told him he could give him an IV and give him Versed in his IV and he wouldn't have to drink it. Evan broke down and said he wasn't brave enough and he was sorry and everyone would be embarrassed but that he didn't want to walk in that he would rather take the Versed through the IV. We all had to convince him that he was the bravest boy we knew and that he was very strong and that taking Versed didn't change that - that we were very proud of him. So that was the plan. This morning we woke up and he was very nervous - had to keep going to the bathroom. When we got here they tried to get an IV but the first one failed, and then the second one failed. He began getting very nervous and upset. The only option at that point was to drink Versed or walk into the OR. He was crying. It made it a hard morning. They called his cardio, who we all love and Evan wanted him and I to walk in with him. So I suited up and carried my little (big) guy with Dr. McOmber down to the OR. He did good... was nervous but not crying. I sat him on the operating table and they put his mask on and he was asleep in no time. We are waiting now to hear that they are through the scar tissue.

Enjoying our extra days

We have been enjoying the extra week with Evan that cancelling the surgery gave us. We got a special visit from our Aunt B. Got to go do the bungee jump at the mall - 1 more time and get a slushie. We went a saw a movie - just Evan and I. We went skating with some of our friends. We went to a pottery shop with some other special friends and painted a piece that I will cherish forever - that was such a fun time. Today we went to church and prayers were lifted for Evan and all over his care. We had dinners with our family and friends. Tonight we are relaxing watching movies. Preop starts in the morning and surgery at 7:30 Tue. morning. Continue to pray!

Surgery Rescheduled - God is in Control

Please pray! We got a call late last night that there is an emergency with another child and they need to bump Evans surgery for them. We were given the option of being stand by 2nd case or to reschedule. Being standby would have been difficult but we said we would take it if we could not be rescheduled within the next few days. Being standby would mean that Evan would not be able to eat or drink after midnight tonight and be waiting for the call to come in tomorrow. What time Evans surgery would be, would depend on how the surgery was going for the 1st child. If it went well it could be early and if it lasted much past afternoon we could be cancelled. We prayed and they called back and said they had a cancellation and that now Tue was open. So... Evan will now have preop Mon. and be 1st case for surgery Tue. morning. Pray for Evan - he (& we) were ready. Pray for this family starting this journey & pray for the family whose surgery was scheduled for Tue
& cancelled. God is in control.

Pre-op with surgeon down

Pre-op with the surgeon is down and pre-op at the hospital is Wed. and then the big day on Thursday. Evan filled his pre-op appointment by making the surgeon laugh. The surgeon explained that he will have 3 options ready to go on Thursday. One is to simply cut the kink out and sew the artery back together. This would only be an option if the kink is small and the artery is not narrowed elsewhere and/or the branches off the artery are not narrowed. The 2nd option is Contegra (sp) cow artery and valve - this is only an option if all that is narrowed is the lpa and/or valve - if the branches are also narrowed this option is out. The last option is homograft human left pulmonary artery valve and branches and this will be used if there is narrowing in the branches off the left pulmonary artery as well as the artery and valve. Of course my prayer is that whatever would last the longest and cause another surgery to either not be needed ever or for a very long time be the option that is chosen. This is the surgeon's call and I pray God will guide him to the right decision. We are spending these last few days to meet Evan's new 1st Grade teacher and have a little fun. We are meeting friends today for lunch at a pizza shop where a train brings around your drinks. Dinner this evening with family and Tue. to rest and pack. Church yesterday was emotional and the prayer with the pastor had tears streaming down my face. Thank you for your prayers, emails and messages... keep them coming!

Approaching the finish line

My last day of work is today... That means this surgery is actually upon us and for that I'm thankful. The waiting has been hard but, God has seen us through that and will continue to carry us through. Everyone always says, "how did you do that" and/or "your so strong". On the other side I always wonder too... how we did it, and the only explanation is through our faith we are made strong.

Please pray for Evan... pray for us as parents... handing your "baby" over is the hardest thing I've ever done. Pray for the Dr.'s, nurses and surgery team that will be caring for him and for the overall success of the surgery. It means so much to get the notes, calls, emails, comments, visits, etc. Evan LOVES the attention and it makes him feel so special.

I'll be updating his blog so please check back with us and pray for specifics. It always seems there is something - sometimes it is pray for pee and sometimes it's for pain management.

Tomorrow is our consult with the surgeon, next Wed. is preop and next Thursday is Evan's big day. The surgery is scheduled to start at 8.

Please pass this plea for prayers on through your own blog or email to your friends, family, church prayer groups, etc. We believe in the power of prayer!

We enjoyed VBS last week and one night the theme was "God is comforting." Yes, he is and I'm so thankful.

Now we all know...

Evan did good at the consult yesterday. Our cardio told him that he had the results of his cath and that his "straw" was pinched and that they couldn't fix it in the cath lab. He told him that meant they would have to do another surgery but that since he is big they hoped to put an adult size in and hopefully it would be a really really long time or never that he has to do this again. Evan was very quiet and just said okay and that he would be glad if they didn't have to do it again. He also said he didn't want to take Versed before the surgery but that he would like to walk in like he did for his cath. The cardio told him if he was sure then he would let him and Evan said he was sure. Dr. later told us that when Evan had his cath it was the first time he had ever had a kid or let a kid walk into a cath with no loopy meds before hand and that if he did it with the surgery that would be a first for the hospital. He said when Evan walked into his cath there were no issues, no tears and that he thought Evan prefered it because he had some control. So… we will see about that. When we left I told him that he had been wanting to do some things and why didn't he pick one and we ended up going to eat lunch at Culvers and seeing Despicable Me. It was cute. He had been wanting to go fishing too - he was so excited his Daddy took him this past weekend. He seems to be doing okay… later in the day yesterday he told me he was scared and asked if I was sad and I told him yes that I was sad he had to have it again but glad they could fix it. He told me he was okay. He wanted to call people and let them know so he called his grandparents, uncle and his best friend. It was sad hearing him… I'm so proud of how strong he is but so sad at all he has gone through that has made him that way. He is my brave boy.

Monday is consult day with the cardio

This coming Monday, the 19th is the day we are meeting with Evan's cardio to break the news of surgery to him. I cannot say how much I appreciate our cardio - he is just an amazing guy. He is so good with Evan and I know Monday will be hard but, our cardio has a way of talking to Evan and the trust he has in him is amazing. I'm ready for Evan to know. I hate knowing and not being able to tell him - when I know he is thinking and worrying if he is off the hook for surgery or not. I think although he isn't going to like the answer the anxiety of not knowing has been hard on him too. So... Monday we will all know.
We have been staying busy. So busy that this week we have gone home everyday (other than Mon.) and rested. Evan even took a 3 hr. nap on Tue. at Mamaw's. This is the first nap he has taken in I believe 2 years so, I knew we were maybe doing too much. We had some of my Mom's family in a week ago and Evan & I got to spend 2 days with them. He Loves his cousin Malia - she is grown up and so cool he says. We spent one day at the movies and another at the zoo. Isn't the zoo picture of them with the gorilla awesome? He sat there like that with them for 5 minutes when I finally told them lets move on. He kept putting his feet and hands up to the glass to where they had their hands. He picked his nose too... yucko. They got to celebrate my Mom's birthday with us and we really enjoyed having them.
We also got to go to Great Wolf Lodge in Ohio with some friends that had an opportunity to get a great discount and invited us along. We always have a great time with this family - us wives are great friends - our husbands are great friends - our kids are best friends, just fun for everyone. We were so excited for the boys to get to have a sleep over and got the biggest room with a cabin inside that had bunk beds and another twin bed in it. We knew that our boys would never stay the night at each others house but this would be a safe way to have a sleep over. We should have saved the money and got the room with 2 King beds. They played in there and thought that was cool. But, come bedtime - the only person in there was the 2 year old and our big boys were in bed with us. Silly boys. I didn't take any pictures of their waterpark - and that is too bad because it is AWESOME! We stayed in there for 8 hours I believe swimming, doing obstacle courses, relaxing in the lazy river and sliding down slides. We went back the next morning again. The kids also got to do this wizard magic quest throughout the lodge that night and that was right up Evan's alley. We visted the Creation Museum on the way home and Evan was amazed at how the Ark was built and the petting zoo was fun and the gardens were beautiful. Again... no pictures. This weekend I get to do some school shopping for Evan with my Mom and Evan is going fishing with his Daddy and to see his dog Babe at Granny's. We also are getting some Munc time Sat. - we love when he visits. There is a birthday party thrown in too - I can't believe this little friend is 7. I was prego with Evan when I was in the waiting room to hear the good news of his arrival.

We have a date....

We got a call late yesterday from surgery scheduling with a date for Evan's surgery. When the nice lady said, "I have the date for Evan's surgery" and I said "okay" and she responded with "It's August 12th with preop on the 11th." I could only think she was kidding. But, she wasn't. SCHOOL STARTS AUG. 11TH!!! Evan's cardio called me today and I said, "say it ain't so". He didn't know about the date and was sorry when I told him.... he said he thought with a month we had more than enough time to get him in before school. He said that with "his" kids, scheduling does take a little longer because he wants in on the surgery. He wants to be in on Evan's surgery and I told him we did too... that I wouldn't want it switched if he couldn't be there. He said he would have his schedule person call the other peds cardio office in town's schedule person and let them know that if they have a surgery come open that he would like it for Evan - of course it has to be a day he is available too. He also has us on backup for another surgery he has already scheduled for July but, more than likely it will be Aug. 12th. He wants to talk to Evan and wants it to be before the end of July... just in case Evan's gets bumped up. So, we have a meeting on July 19th at noon so he can talk to Evan. Evan is still asking questions here and there - some of them just breaks my heart. He has a little dog at his Granny's house and he told me the other night, "Mommy... if I die before you do will you take care of Babe?" I sat up thinking, why oh why Evan do you say these things!!! I told him that God has amazing things planned for him and that he is going to grow up and be something awesome, like a heart surgeon helping other kids and he is going to be married to a beautiful girl and have kids and that he would drop them off at my house like I do him and I'll be the Mamaw!" He liked this and went on saying happy things. He ask here and there is I know yet and so far I haven't lied because I haven't known a date and now I do... I'm trying my best to keep him busy. We have a long fun weekend planned so just another month to go (rolling eyes.) I'm so sad and frustrated and thankful Evan's case isn't urgent, all rolled up into one. I think this will be really hard on Evan at school. On the first day... it is everyones first day - you meet your teacher - meet your classmates - get assigned seats, etc. Evan will be going in 3-4 weeks later when a routine is already established. I think he will struggle socially with this - feeling different and left out. Ugh... tears rolling just thinking about it. Say a prayer... if this is Evan's date then it is for a reason.

I have had some asks why their messages aren't showing here... if you do not have a google account and you post a message click on Anonymous and then put your name at the end of your message in the message box.

Enjoy the pictures of Evan having some summer fun in his little pool. Look at his hair!!! He wanted it just like his Dad's - short!

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!