Happy New Year!

I feel so excited to be ringing in the new year tonight! Really... 2008 was full of blessings but a hard year none the less. We are thankful for the blessings we received in 2008 but excited to put it behind us and start with a fresh 2009. My dreams for 2009 are for my little Braveheart to be happy and healthy - that he gets to have a year off with no big procedures - that turning 5 is an awesome day for him and that in August (sniff... sniff..) the transition to big kid school is exciting for him and that we are able to make Disney happen this year for him. So... goodbye to vent scan #4, cath. #4 and OHS #2. HELLO 2009!!! Happy New Years to all of you!

Christmas 2008

One Happy Boy

Kathy... you made Evan's day! You can tell from the pictures that my little man had a great time tonight with his surprise delivery. I'm sure this cape with get more play time than any of the toys under the tree - why don't we ever learn??? Evan is one make believe kid - he stays in make believe mode most of the time. Eric was laughing a while back when he walked into the house to hear me saying, "Evan... I just want to be Mommy... I don't want to be Captain Hook anymore tonight!!!" Thanks Kathy and yes... I would have loved some sunshine today - we are talking single digits here. The smile on his face did fill me with love for ya!!!

This past week has gone much better for me. Things have seemed much calmer and I feel much less stressed. I had a great time last Fri. night with Eric's brother and SIL - we just Love spending time with you guys!!! Their granddaughter Kayla is only a few months older than Evan and they played so well together. Guess what they requested for dinner... LASAGNA (read last post)!!! I made it and there were no *ahem* issues.
We stayed home all day Saturday wrapping presents and watching Christmas shows. I think that really got us excited for Christmas - being able to just stay home and enjoy the tree and seeing the presents wrapped with pretty bows. Evan begged to open some but was okay with just shaking them and trying to guess what was inside.
Sun. my BIL gave a Christmas recital at his church. I had planned on leaving Evan at home w/ Eric and going with my Mom but, Eric had to work so he went with me. I was a little worried since it has been a while since Evan has been in a church like atmosphere but... he did really well. David - you were awesome and made everyone cry with your solo "God Bless my Family." We are so blessed.
Sunday evening I got to spend with my Mom and her BFF. Evan loves to be in the center of our girly conversations, LOL! I Love you both.
Tonight my Mom and I made divinity, mmmmmmmm.... I'm ready for Christmas now!

It's the Holiday Season...

With the whoop-de-do and hickory dock...

I'm singing Christmas songs all day. Whatever is playing when I get out of the car keeps running through my mind. I'm sure I'm driving my co-workers crazy. LOL.

Talking about crazy, life has been crazy. I have been a mess since I've been back to work. We run around the house every morning doing circles. I thought I was doing some better last week. By some better I mean that on Mon. I left Evan's backpack at home with his lunch in it and had to turn around to go back. On Tue. I left my cell phone at home and it is my life line so I had to turn around. On Wed. I went into a zone while driving to school thinking about what all needed to be done and Evan said, "Mommy?" I hit the brakes and turned around... miles past his school mind you. I asked Evan, "Evan.. why didn't you help me out and tell me I had passed school." He replied, "Mommy... I'm tired. What's wrong with you Mommy?" Oiy.

On Sunday we had some of our dear friends over for lunch. I had an agenda of things that needed to be done before they arrived. I hadn't been home on Sat. as my Mom's families Christmas was that day. So Sunday morning I started bright and early with laundry, cleaning, vacuuming, mopping, dusting, making cookies, wrapping gifts and finally the food for lunch. I popped a lasagna into the oven at noon and my guests arrived at 1. I finished the salad (which by the way, I never put the croutons or the pepperocini's on) and thought the lasagna needed to brown on top so I turned the broiler on while I fixed drinks. I turn around and remember THE LASAGNA... I opened the oven and smoke comes out and the alarms start sounding... Thank God for Pizza Hut and their new lasagna dish. Jason and Stephanie, I know your laughing. I'm not.

I had another get together Sun. night and I was the guest and enjoyed myself. On the way home however, our brakes starting grinding and Eric spent half the night changing those. See... crazy...

We had our pictures taken for our Christmas card. Thanks brother for taking them. Merry Christmas and hope you are all well and enjoying the season.

Preschool Play

Happy Thanksgiving

Don't we all have so much to be Thankful for? I know that I feel over flowing with Thankfulness. I remember the Thanksgiving after Evan's 1st surgery and how the entire day I would find myself looking at him and thinking - Thank you... thank you... thank you... I should be thankful all the time, and I am but my emotions are still very raw from his surgery. We are so blessed. I also wondered this, how do you thank the surgeon, cardio and nurses for what they did for our baby? You hope that they know and see the rewards when a life is saved. I found that on Walgreens you can make a postcard and from the site put the address in and they will send it. I had taken a pic of Evan and his surgeon and had it put on a postcard with a Thanksgiving scene and wrote a note on the back to him... I hope he gets it and I hope he knows how Thankful we are for him. These people devote their lives to this work and if they didn't our son might not be with us. Thank God for them. I also thought of the individual who chose to be a donor and their family and wonder if they received their letter yet saying that a 4 yr. old boy received the pulmonary artery and valve. I hope they find some comfort in knowing their loved one has given my baby a chance for a normal life. I'm Thankful.

Evan is loving being back at school and is learning so much... he amazes me and has a memory that is scary. His school is awesome and I'm already sad that they don't have elementary there. He learned about pilgrims this week and made some hats. One day after we got home and I was cooking dinner (yes... I did) he was in the living room playing and came and asked for help. He had drawn all these King, Queen and Pilgrim hats, colored them and cut them out and taped them. I thought he did a really good job and he said he wanted everyone to wear them at Thanksgiving. I got a pic of Evan, Mamaw and Munc displaying the Thanksgiving hats Evan made.

We are finally settling in and are hanging pictures this weekend so that we can work on getting Christmas out this next week. If you couldn't tell before, I'm a bit of an OCD type of person. I took a couple days deciding where things should be hung and my husband was to help me tonight get the pictures up. I walk in with my laser level, hammer, tape measure, ruler and nails. He holds the picture up and I'm like, oh... no, no, no. We have to measure the area, then measure the picture and then measure 60" from the floor and add 1/2 the picture measurements... etc. He went along - knowing it was best to do so, LOL. We were almost finished with Evan's room and I was measuring away - laser lighting the mark for straightness - show him the mark and he hammers the nail and I hang the picture. I hung up the last picture in Evans room and he stood back and laughed. I looked up and saw this... Okay... so, I'm not ALWAYS perfect... almost though. You should see my plans for the stairway...

Croup

How do we tell it is truly winter??? Evan gets croup. He has these breathing issues every winter. He had such a horrible night. It started Mon. night and I thought his undiagnosed asthma was acting up so we gave him a breathing treatment of Albuterol and Pulmicort and it seemed a little better. He went to school on Tue. and they said he did fine there. Last night he started the barking cough and we did another treatment and attempted to go to bed. It got worse and worse. Evan has reflux so anytime he coughs more than a couple in a row he also vomits. There was no sleeping going on here. The shower was not helping so we wrapped him in a blanket and set on the deck in the freezing cold and while we were out there he would stop but the minute we came in it would start up again. We went into the Dr. today and she confirmed croup and gave him Prednisone in a dissolvable tablet - he didn't take the liquid well last winter. So we go home and I give him the tablet which he immediately starts vomiting back up. I call and they say try again so... I get smart and go to the bathroom and put him in the tub and try again... He had it in his mouth with this determined look to get this overwith and then I see his cheeks puff out and he covers his mouth and then just lets loose. I called the Dr. and they say to try again in the morning and if he doesn't take it then we will head back for a shot. So... we are pretty much where we were last night. Pray for a good nights rest... while your praying for us pray for Elijah and his family as they are in this same croupy boat.

It's been a while... Did I say in my last post I'm never moving again... if I didn't, I'm never moving again. Seriously... I'm a creature of habit and I've felt upside down and crazy ever since the move and *need* to get things in order before I loose it.
Evan is doing wonderful. He was so excited to go back to school last week. I have to tell a story about that. Evan's school is awesome... I love them. We walk in on that first day and I know that some of the teachers knew that Evan was supposed to be back that day but also knew that if he ran a fever over the weekend that he would not be there. So.. we walk in and the sign in is across from his room and I can see his friends playing. His two closest friends at school, Olivia and Blake, turn around and see us and they started jumping up and down and yelling for him. Evan beamed. We got signed in and went into the room and they surrounded him. Evan raised his shirt up and said this is my first day back from my heart surgery, see? There was his friend Blake, Olivia and another little girl just hunched down staring at his little chest and the little girls reminded me of little old ladies.... the conversation went like this:
little girls - oooohhh Evan did it hurt
Evan - No... I was asleep but it hurt when I woke up
little girls - awwwh... Evan I'm so sorry
Evan - I'm okay
little girls - awwwhhhh Evan... what are those scratches
Evan - It is my scar...
little girls - awwwhhh... can we touch it
Evan - well you can but be easy, it still hurts a little
little girls - awwwhhh... well Evan then we won't touch it
little girls - Evan, you want to play kitchen
Evan - not right now
little girls - (taking him by the hand) well Evan then lets go color

I left with tears in my eyes... seeing his little friends be so sweet leading him off to color.
Evan had a great first day back and was like he never missed a beat. Me... I cried. Five weeks off with my beautiful, brave little boy. I owe you pictures and if I promise I will post some.
My Mom and brother are taking a much needed vacation to CA to visit family. LA friends - they have a lay over in LA today- could you go hug my Mom for me??? I'm a Mama's girl and I'm so going to miss her this week.
There are some things I want to to write about... as much to share as to have a place where I can read them. I have no memory and seem so forgetful as of late.
During his pee pee crisis - he would be trying to go and he would have sweat on his brow and be trembling with pain and I would be sitting in front of him letting him lean on me and rubbing his back and he would look up and say, "Mommy, I need a kiss" and would pucker his little lips out and we would kiss and both have tears rolling down our faces. The first time he pee'd without pain he cried and through his tears said, "Mommy... it doesn't hurt anymore, it doesn't hurt anymore." Since Evan's surgery he often - especially at bedtime will tell me, "Mommy, I Love you, I Love you more than anything." He was telling me this a few nights ago while we were watching the CMA award's (he LOVES Taylor Swift) and fell asleep. The next song was Trace Adkins, "Your Gonna Miss This." I cried and cried. He came home the other day with a picture he drew at school. There were lots of little smiley faces with little stick legs and arms. I asked them who they were and he was saying, "Mommy, Daddy, Mamaw and that one is me." I looked and his had a line drawn down the middle and dots around it. I asked him what it was thinking I already knew and he said, "that is my scar and chest tube scars."
I promise pic's next time.

Getting back to normal

We are starting to slowly dig ourselves out from under boxes... and are in a little shock of actually having tv and internet access. I'm never moving again... but... I'm glad we did. Evan after his 5 day fever scare has been given the A-ok and has been doing great and will return to school on Monday. I... get to go back to work on Monday... I'll be catching up on all of you and hope that things have been going well.

Cardio update

This is Munc for Sarah again....

Evan's cardio appointment showed that he looks good, his heart looks good from the echo. If it was endocarditis there would have been more signs: leaking around the valve, Evan would've been much sicker, etc. Dr. said reason for 103 degree temp spike is an unknown at this point. Advised to stop giving Motrin to see what temperature would do, just keep a close eye on things. If it goes above 101.5 to call cardio and further tests would be performed. The cardio felt that taking Evan to the pediatrician at this time would be a greater risk since he appears to be doing so well. So for now it is hang tight, watch temp and keep on moving. Thanks for all the prayers.

Fever spike. Prayers/advice needed.

This is Munc, posting for Sarah.

Evan had a fever spike last evening of 103. Upon calling cardio, was advised to give Motrin, and was told to head to our parents - which is closer to Kosair. Cardio told if the fever went below 100 degrees to stay put for the night, otherwise come to ER. The fever stayed down throughout the night with regular doses of Motrin. Contacted cardio this morning and was given a 12:30 pm appointment. The fear is endocarditis. Sarah will update later.

I need some sleep

It is only Tuesday night and I'm already so tired. We packed all weekend long. Evan helped... it was so cute, he would get a box for his room and take a marker and write his name on the box and go into his bedroom and put one toy in and ask that the box be taped up. I can't tell you how many times we had to slip his toy back into his toy box and get our box back. He really felt like he was helping though and I think that is needed for him to feel a part of this and prepared for the move. Closing went on without a hitch, whew was that a relief. That was the first time I've been without Evan since a week before his surgery. It was hard on us both. He did well at Mamaw's though and we were able to close and order our appliances and schedule delivery. It had been such a long day that we ended up crashing at Mamaw and Papaw's - what would we do without them. Speaking of people we couldn't do without. Eric's brother and SIL came and spent all evening with us cleaning and preparing the new house. How could a new house be so dirty... my sheez... seriously. It took the four of us working non-stop for 4 hrs. Thank you Davy and Melynda for everything.
So we continue to pack and take loads to the new house daily. Our final push will be Saturday. I expect Evan to have somewhat of a hard time with this. He does not like to talk about moving. He has cried a little bit and said that he loves his home now. Nothing we say will matter to him... this is his home and he doesn't know any different. Bless his heart... if he only knew how much closer to his friends/family/school etc. this will be. I'm sure he will adjust.
Heart wise we are doing good. Evan's fever comes and goes... the cardio didn't seem surprised and stated that all his Homograft patients run a fever for a while??? We aren't doing Motrin every 6... just as needed and it is usually twice a day that I can tell his fever is going up and it is usually been 99.9. He chest is healing nicely... I can't believe how good it looks and only 2 weeks post-op. His nose is healing... they believe that the fever blister from his lip spread to his nose. We had to clean and apply ointment 3 times a day but today you can hardly tell they were ever there.
Thanks for checking in on us. There is an 80% chance of rain on Saturday.. NOOOO!!!

Surprise Packages

Surprise Packages

Evan has been surprised by the UPS man so much this past week or so since we have been home. I told my Thank you to our awesome friends and family that came and supported us while at the hospital. This is a shout out to all of those who have sent cards, left messages on his blog, sent gifts, called and prayed for us post-op. We have gotten so many cards... most from people we don't even know - telling us they are praying and are amazed at the wonder God has done.
My friends at work... Thank You for the huge delivery of candy, chips, cokes, etc... I believe we got that the day after we got home and it brought a smile to his face, as you see in the pictures... Do you see that huge plastic tub??? I've had to ration his goodies to a few a day but... he loves it.
Angie... I shook my head the next day when the UPS guy came again... I'm blessed to have met you and can count you as a friend. Evan LOVED getting a gift from his girlfriends... and Robert, LOL!
Today we got a gift from one of our fellow Brave Heart families. Shannon and family... he was so happy to get another surprise. The card touched my heart. Evan's card... well we danced... yes, we believe Evan is Rock Star too!
Also today we received another gift from our local American Heart Association. We have worked closely with our local AHA since our group began - all of our fundraisings go to them and they help us get the word out too. Evan was so excited that he got another gift. He can't wait until tomorrow night to take his card and go pick a movie out for movie night. The girl we are most familiar with at AHA's name is Johnna and she is such a sweet and kind person... she is also a TOF survivor and her spunk and zest for life give all of us parents a smile.
So today... we tried to pack a bit, played Bingo, shined Halloween flashlights, colored, played with stickers books. Thanks to everyone of you for making our Little Braveheart feel special - and like a Rock Star!

First post-op checkup

We had a cardio visit and everything looked well per our cardio. They did the usual EKG and echo. Evan was dreading the removal of the stiches. I had put some numbing cream the hospital gave me on them but... we couldn't lie to him that there would still probably be some discomfort. Maybe we should have fibbed a bit. Evan LOVES his cardio and always does exactly as his asks. Today... well... he still LOVES his cardio but he was screaming his head off. Poor cardio, we could hardly keep him still long enough to let him get the tweezers around them to pull them out. It went fine and after 2, Evan realized it didn't hurt so bad and calmed down. He was all smiles on the way out. We even got to visit Mamaw and Papaw's - talk about cabin fever - we didn't know what to do with ourselves out of the house. We will have an appt. every two weeks for a while.
I was keeping a secret but... it looks as though things are final and I can talk about it now. We had so much trouble with the last contract on our home that I dared not speak of it until it seemed for sure. BUT... our house sold!!! It has been 1 yr. on the market - 1 yr. of my house been so clean... When we found out about Evan's surgery we immediately called our Realtor and asked that our home be taken off the market. That is when we planned our trip to Indy and left for the weekend. We had numerous calls from our Realtor saying people had called and wanted to see the house. We said go ahead, but it would have to be an offer we couldn't refuse for us to accept it and they would have to be willing to be flexible on when the move happened. I believe we had 6 showings that week and 2 offers... after all this time. One offer was good and the guy was willing to work with us on closing and we set a date 4 weeks post surgery. We began the look for a new home and the deal was settled the Thur. before Evan's scheduled surgery. Boy were we busy that week. Then Evan's surgery was cancelled. Although that was upsetting I felt God telling me to slow down.. enjoy my extra time and I did. I took that week off work and just spent some really special time with Evan - not worrying about the houses. So... now we will be leaving 3 weeks post-op but... I think Evan is good for the move. Pray for us. Pray that both closings are successful and that the move is quick and easy for Evan. Honestly... I CAN'T WAIT!!! We will be so much closer to everyone we love and everything we are involved with. A turn of a new chapter for us. It will be bittersweet... this home holds lots of memories for us and the only home Evan has ever known but... I can't wait to make new memories and make our new home, "home".

Breakouts

Things have been going well... his fever has returned to normal as of yesterday. He is able to pee now with no pain. The only weird thing going on now is that when he woke up yesterday morning he had a horrible fever blister on the left upper side of his lip and on the left side of his nose there are 4 really bad looking bumps - almost like pimples... He has never had any face breakouts so I'm not sure what is going on. I called the cardio and he didn't feel like it was anything to be super concerned about, just to watch it and maybe call our pedi. and see if they were willing to look at pic's of it online - if your our pedi. and reading this... Thank you for avoiding a trip in for this. There are also some peeling going on... almost like he had a sun burn and now it's peeling. The peeling areas are only above his eyes and on his neck which are all places there was tape so we are assuming this is a reaction to the tape. So... we are treating the fever blister with some Arbonne cold sore treatment and will wait and see if the pedi. has any ideas about the bumps. Thanks for checking in on our little guy.

Prayer Request

We are home but, don't stop the prayers. In the hospital Evan was on Tylenol/Codeine and also Motrin. Since the day before discharge Evan begged to not take the Tylenol/Codeine and the Dr. said if he didn't like it then, not to make him take it. Evan never ran a fever in the hospital but, he was on both of these for most of his stay. Since coming home he has only had Motrin every 6 hrs. Yesterday afternoon I thought Evan felt a little warm and I checked his temp and it was 99.5. The discharge papers said not to call unless it was over 100 but... he was on Motrin. I began wondering what it would be if he was off and if I should go ahead and call. Me being the Mom that all Dr.'s love, called. Dr. said that they take into consideration the meds that they are on and with him not taking the Tylenol/Codeine that I could wait to worry and call if it went over 100.4 - to continue to the Motrin and that things are probably just fine - that he was better off here that being admitted again. I checked it several times throughout the night and it was between normal and 99.8 - I set the alarm and gave him Motrin every 6 hrs. Today has been the same but... we woke up from a nap and I looked at the clock and knew he would need Motrin in 30 min. so we were reading and I looked up and it had been an hr. I got the Motrin and checked his temp... it is 100.5. I'm debating calling but hating the thought of taking him back in and hoping there isn't anything going wrong with that little healing body of his. Since I was late on the Motrin, I'm going to wait another 30 min. and check it again and see if it went back down. Pray.

Homograft Surgery Pic's

We are Home!!!

I can't believe that I'm typing from home. I feel so blessed. My baby is just doing wonderful. I have just been overwhelmed with happiness. I'm so grateful that things have gone so amazingly. I'm so proud to be this sweet special boy's Mommy.

Evan is doing well. He is sore, which makes it difficult to walk or move much on his own and also makes it difficult for us to move him without causing him pain. We try to cradle him like a baby to get from the bed to the floor or from the floor to the bed. We cannot pick him up under his arms and when picking him up have to support his shoulders. He is able to walk and feels good sitting or laying down. We just had a little bath and it was interesting trying to pick up a 50 lb. boy from the tub - I should have some big muscles after this.

He is still having bladder issues. They expect it to get better and have given him 3 more days of the meds. If this has not cleared by then he will need to see a urologist.

I still can't believe that we are here. I'll have to post pictures just so you can see how wonderful he looks. He is on no heart meds... I can't believe that.

Thank you all for checking in on our little guy. For leaving messages to encourage us and letting us know you were praying.
Thank you to our parents and family for being there with us and loving our baby so much. Thank you for sending cards and balloons to brighten his day.
Special Thanks to our parents for being there and for staying with us to visit and bring snacks and anything else you thought we would need. Mamaw - thanks for coming back the next day and singing the song Evan wanted you to come sing.
Thank you Munc for always being there to calm our nerves and being that quiet calm support that we needed - and for playing 3 rounds of Backyardigans racing. Thank's to your whole family for the visits and food.
Thank you Kelley and family for being such a support system by staying with us, visiting everyday and bringing smiles - you don't know how much that means to us.
Thank you Brave Heart family for everything - God has lead us together and I'm so thankful for the friendships we have made. The huge sign with handprints brought a smile and Evan was very proud to announce to his Dr.'s and nurses that his Brave Heart friends brought that for him.
Stephanie and Carrie - thank you for the food... you knew I wouldn't leave the room. Stephanie and Jason... thanks for being such wonderful friends.
Thanks Shanna for stopping by even though you were leaving the next morning for Disney and hadn't yet packed.
Thank you Fitzgerald family for the food and cards.
Thank you Uncle Davy and Aunt Melynda for always letting us know that you care and always being there for us.
Thank you good Angie and bad Angie for bringing us lunch as we ran out the door.
Thank you Bro. Jeff for praying and checking in on us.
Thank you NBCP for your prayers - sorry we missed you Ms. Debbie.

Thank you God for the gift of this special Braveheart. We are so blessed.

You will not believe this

We had a good night... we all were able to sleep. His bladder is still giving him some trouble. It takes about 45 min. to pee. It is not that Evan doesn't want to pee or isn't trying to pee, it is that his bladder is spasming and then trying to get through the narrowing in the uretha. His is on med's for this and they hope they will start to help things get easier.
Dr.'s made their rounds this morning and said his chest x-ray looks clear and that his heart is doing wonderful. They echo showed the same. So... we are being discharged!!!! Can you believe it? Just 3 days post op and we are going home. Of course getting out could take all day but... sometime after lunch we should be heading out of here.
Hopefully recovery at home will continue to be good. He hasn't had his pain med. since yesterday afternoon. He is only taking Ibuprofin and his med for his bladder.
What a testiment this is - everyone is amazed.
My boy has been so brave and sweet and such a good patient. We have spent a lot of time in the bathroom and he will be trying and he will say, "Mommy... I just need a kiss, I Love you." I will be talking to him or sitting him and I'll just start crying and he'll ask if I'm okay and I keep telling him yes... just so happy. He is a miracle and we are so blessed.