Wednesday, December 31, 2008

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!

Monday, December 29, 2008

Monday, December 22, 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!


Monday, December 15, 2008

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.


Friday, December 05, 2008

Saturday, November 29, 2008

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...




Wednesday, November 19, 2008

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.

Friday, November 14, 2008

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.

Saturday, November 01, 2008

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.

Thursday, October 23, 2008

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.

Tuesday, October 21, 2008

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!!!

Friday, October 17, 2008

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!

Thursday, October 16, 2008

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".

Monday, October 13, 2008

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.

Saturday, October 11, 2008

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.

Friday, October 10, 2008

Thursday, October 09, 2008

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.

Wednesday, October 08, 2008

Update - Chest tubes, pacer wires are gone!

This has been such a long day. I'm still amazed at how well things have gone and how fast we have moved through the process. Like I mentioned this morning they believe that Evan has a congenital narrowing issue with his uretha and that is what was inflamed from all the cath's and causing so much pain and his inability to pee. His surgeon this morning said things were going great with his heart but that his bladder was going to burst and that they were calling the urologist... We were given minutes for him to pee. Eric and I were in the bathroom begging Evan to push through the pain and pee... I felt horrible - here we were telling this baby that has 4 chest tubes hanging off his already sore chest to push through the pain. He did enough to avoid a cath. but they said it must continue. He has gone two other times today so we are riding a fine line. You can tell though that he is feeling much better. The last time he went to the bathroom his pain seemed much less. In the midst of all of this his heart is doing amazing. They pulled the pacer wires this afternoon and an hour later came in and pulled all 4 chest tubes. He has eaten a tiny tiny bit today and is drinking good. They asked him to walk and he walked all the way to the nurses station to show his nurse he could do it... Continue to pray - last night and this morning was scary - I'm expecting the heart stuff but a bladder problem is something I'm new at. We are going to try to sleep - something that hasn't been done by any of us since late yesterday afternoon. Thanks again for all the prayers, food and cards...

Pray for Pee and Pain Mgmt.

Last night was a very long night. Evan has been doing great and heart wise he is looking wonderful. He has not had anything to eat but had been taking drinks well. We started trying to get him to pee and he was refusing but... we knew from his recent cath. that, the first pee after having your urine cath. removed is tough. We really worked and worked with him as the Dr. and nurses seemed concerned. We got him out of bed for the first time and to the bathroom and worked and worked with water running, dipping his fingers in warm water, etc. and nothing. They said that they needed to cath. him again and relieve his bladder and they would remove it and hopefully he would begin to pee on his own. They did try to cath. him and they could not get it in. We tried on our own again to no prevail. They came in around midnight and tried a 2nd time and had no success. We ended up calling our Dr. and they said to leave him alone for the night and that they would be here early to access it. The Dr.'s came in early this morning and heart wise things are looking good. They put orders in for his chest tubes (all 4) to be removed and his pacer wires. The Dr. said that otherwise the concern is his bladder and that it was so full there was a risk of it bursting. They called in a urologist and began looking back through his file on all the other times he has had a urine cath. and everytime it was written that there was resistance on getting the cath. in. The urologist believes Evan has a narrowed uretha and that it has been aggervated by the original cath. and further aggervated by the 2 cath.s last night. They prescribed him a med. that is usually for a urinary track inf. and they said that this should help relieve his bladder and allow him to pee. He did pee a tiny bit this morning to avoid a cath. which would cause more problems but... it is not enough and we need more pee within the hour. They said that not only is his bladder full but he is trying to pee and push past that narrowing and then he is also trying to push through the regular burn of the first pee after a cath. Pray for pee and for his pain to be minimal. The pacer wires and chest tubes pulled all at once was enough pain, besides this. Despite all the pain he is finally today beginning to talk and even a few smiles. Pray for the pain to decrease so he is able to pee. I'll try to update later.

Tuesday, October 07, 2008

Quick Update

God has shown some amazing works throughout the night and this morning. Evan has been so brave and so courageous. He did wonderful coming off and staying off the vent. He had a liter of oxygen for a while but did not like it and his Sat's were high enough to remove it. He has complained a little of pain but the med's seem to do the trick quickly. The Dr's made rounds this morning and were all saying how wonderful things are going and that we are moving OUT OF ICU!!! Yep... less than 24 hrs. later we will be in our own room. They have removed his arterial and central line, urine cath. and all that remained is his pacer wires and the 4 chest tubes. They expect those to be removed tomorrow. I'll try to update later. Keep the prayers coming.

Monday, October 06, 2008

ICU Update

We are in ICU with our baby and he is doing wonderful. He was waking up and breathing over the vent so they extubated him at 6:30. Everything is still doing well. He is thirsty and uncomfortable but he is doing good. Just trying to keep the sats high and the respiratory good. Pray for rest.

Update #2

They came in at 12:40 and said that the first part of the surgery was complete - they had connected the donor to the left pulmonary artery and they had left to connect it to the right pulmonary artery and connect the valve. They came in at 1:30 and said that surgery was complete, the valve was working and the artery's were wide open. He is off Bypass and needed a dose of dopamine and a little initial help with pacemaker but established a normal rhythm and was taken off of it. They still have chest tubes to put in and to close. Once that is complete we will talk to the surgeon.
As I as typing the surgeon came in and said things went great... they were able to put in a big homograft - bigger than expected. He said that Evan is doing excellent and has continued to remain in his own rhythm. They are closing him now and putting in the chest tubes so, it will be a few hours before we are able to see him. Please pray. I know the next 24 hrs. are critical.

Update #1

Evan did well this morning, thirsty and hungry but well. They came in at about 7:20 and tried to let him drink his versed and he vomited immediately so they had to do versed up the nose (Evan hates this) and he gagged but, kept it down. Within 10 or so minutes they came and got him... We have a private waiting room and are with friends and family praying and pacing. They came at 9:28 and said that they had the lines in and again at 10:20 and said they were in though the scar tissue. They came again at 10:40 and said he was on Bypass... We are anxiously awaiting for the news that they are done and he is off Bypss but, don't expect it for a few hours. Please continue to pray.

Saturday, October 04, 2008

Evan's BFF's at the Zoo's Pirate and Princess party

Pre-Op is over - Mon. is the Big Day

Things have been going well. The cancellation last week was a blessing in disguise. I got to spend a week uninterrupted with my little guy and we just had some really nice together time.
Yesterday was pre-op. We were to be at the cardio at 9:00 for a complete exam and then on to the hospital for blood draw's, x-rays, urinalysis, etc. Also to meet with all the Dr.'s and nurses that will be on his case for Monday. Let me tell you that my little brave guy had a hard time with blood draw's. He was brave and let them do it - all 4 times - but, he let him know (very loudly) that he did NOT like it one bit. I don't blame him. They had such a hard time getting blood. Once that was over he was rewarded with a slushy and a visit to the play room. I stayed back to talk to Dr.'s and nurses. There was a moment I was alone and saw our nurse on the phone and heard her mention Evan's Dr.'s name and then seemed upset. Let me tell you that my anxiety went over the edge and I was praying over and over that she was not about to give me bad news. She disappeared and my panic increased. I finally asked another nurse to please go find her. She came around the corner crying and I thought... brace yourself Sarah... She said, "I'm so sorry... I'm stupid... I sent his blood wrong and we have to redo the blood draw." I breathed a huge sigh of relief and told her that was okay... Little did she know of how she sent my mind racing into a bad place - I would so much to always get the news straight. They did the blood draw again and everything came back fine.
We went to see the surgeon and he is awesome. He could not believe how much Evan had grown and how well he looked with all he has going on. Evan really does look awesome. He said that he was going to do a homograft and should be done by mid afternoon. He seemed very confident and believed we could be home in 5 days... We left the hospital and all I could think about was that in one week would could possibly be already leaving again for home!!! I'm so ready for this and for it to be over.
We have some other news but... I'm saving it for our first post from home. Any guesses???
I'll be posting from the hospital as I can. If I can't post, I'll have someone else do so at least once a day.
Please say a prayer for Evan - that surgery is a complete success and that he handles things well, cooperates with the nurses and Dr.'s and recovers from this quickly.
Thank you for checking in, praying and supporting us and our little Brave Heart.
Check out the pic's of Evan and his BFF at the pirates and princess' party at the zoo.

Monday, September 29, 2008

Friday, September 26, 2008

Evan's Surgery Rescheduled

We received a call last night that an infant was born yesterday that needs emergency surgery so, Evan's surgery would need to be cancelled. I was at a loss somewhat - all this preparing and building up for the day to have it taken away. I cried... I had to tell Evan... then I thought of the family that would be enduring this walk with their newborn and remembered that God is in control. Who knows the reasons completely but... Jesus Loves us and is looking out for us. So... Evan's surgery has been rescheduled for the next Monday, October 6th. We seem to like October... Evan's first surgery was Oct. 26th. On my way to work this morning a song came over the radio just for me - the lyrics begin:

I am not skilled to understand
What God has willed, what God has planned
I only know at his right hand
Stands one who is my savior

Saturday, September 20, 2008

Friday, September 19, 2008

Indy Trip and Evan gets the news

Last weekend we left early on Thursday morning and took off for Indianapolis. We arrived at the zoo shortly after it opened and it was a beautiful day. The Indianapolis Zoo is amazing. We have a membership to the Louisville Zoo and we go there often but... WOW!!! We had so much fun seeing the sharks, sea lions, walrus' and the dolphin show was awesome. I felt like I was at the zoo part of the day and at Sea World for the other part. We had so much fun there. We got to our hotel right at checkin time and were at their indoor waterpark in no time. We stayed there until they were about to close. They had 5 seperate parts - a pool, a wading pool with a huge pirate ship, a lazy river, hot tubs and then of course some huge crazy waterslides. I was surprised that Evan passed the hight requirements to ride the slides. I asked him if he was interested in going down one with me on a double raft and expecting the answer to be no, he said yes. So up the flights of stairs we go and into the raft at the top - we start down this huge slide and I'm screaming and I hear Evan screaming and what I thought was crying. At the end we swoosh out and I jump off the raft to get him and he is laughing and screaming, "Let's do it again!" He is definately my child. Since the stairs going up to the slides were 4 flights - I limited our slide to one an hour but... Eric got it on video and I'll post that tonight. The next day we went to Indianapolis Childrens Museum and it is huge. Evan LOVED the dinosaurs and the dig site. He wanted to stay there all day and we even had to go back before we could leave. The rest of the museum was awesome to us but Evan seemed that either it was too small for him or over his head. We had a great weekend away.
Yesterday was our appointment with our beloved cardiologist who had offered to be the one to break the news to Evan. We went in and sat down and he sat across from Evan and began to draw a heart and explain to Evan what they did in his first surgery and why they did the cath and how the last cath didn't do it's job. Evan was listening and looking away and things in his office and then he said... Evan, you remember how you had the cath. and went to sleep, well... your going to have to go back to the hospital and go to sleep again and we are going to give you a super dooper valve and straw to make you strong... when you wake up your going to hurt and be sore but... I'm going to be with you and give you medicine to make it better and your Mommy and Daddy will be there... I will be with you in my pajamas so... don't be scared. Evan started telling him that he is strong, very strong. He told him that there are different types of strong - strong in that you can lift heavy things and then there is strong in you have courage and are brave. He told Evan that he would need to be brave. Evan said that he didn't like that and didn't want to. Evan told him that he needed to go in his shell and have a talk with himself (don't know where that came from.) and got back up and said, "No, we can't do this, not until I'm 5." He told him to talk to his shell again and tell it that he would need to be brave so Evan did this again with the same answer. He talked to Evan about how brave he has been in the past and that he could do it again and Evan said, "well... I need to talk to my shell again and this time I need you all to close your eyes and cover your ears." Dr. McOmber looked at us and shut his eyes and covered his ears and we did the same. You could hear Evan talking outloud to himself saying, "Yeah, uh huh, okay, no, I don't like this, okay, okay." He told us we could look up and we did and he said, "okay... we talked and we will be brave." He asked Evan if his shell was like him being scared and he said yes and he told him that, that is okay and that it is normal for him to be scared but that we would be there for him and help him. He then asked if we could leave and Dr. McOmber told him that yes we could leave but did he have any questions and he said no but he told him that if he did have any questions to call him or ask his Mommy and Daddy and that if we didn't know that we would call him. Evan went off to find the nurses and candy and stickers. We stuck back a minute and thanked him and he reminded us that there would be many emotions and that we would need to be patient and let him have those.
It was interesting to see how Evan reacted. So sweet and innocent and at the same time to see how he interpreted the information and spoke with himself.
So now we all know. We've got fun plans for the weekend - a pirate and princess party at our zoo and going to see Igor at the movies. Pray for us and that when/if questions are asked that we have the right words.

Friday, September 05, 2008

We have a date

I received the call today. Because of scheduling issues and not wanting Evan's surgery to be late in the week (any of you heart families know why, don't you?) we have agreed upon a date for Evan's 2nd open heart surgery to replace his pulmonary artery and valve, September 29th.

Evan had just fallen asleep when I received the call and for that I'm thankful. I had 2 hours to just let it out - all of these emotions I've been keeping locked. It is a somewhat helpless, powerless feeling - knowing there is nothing I can do to prevent this from happening or protecting him from it, as it is what is needed. Oh how it hurts. I think I had already prepared for the tentative Oct. 20th date and this seems oh so soon. After I pulled myself together I started thinking about how we would feel about this when Oct. 20th rolls around and we are on the other side of this.

I also had a call yesterday with the cardio to ask questions I had concerning the decision chosen to do a Homograft. The question I had was why cadaver was chosen over bovine and the reason I was given was that bovine valves are taken from the neck and do not include the artery branches. Evan's main problem is his left pulmonary artery. Evan's valve is leaking on the severe side but... they would not be replacing it now if they weren't going in already to replace the left pulmonary artery. The cadaver valve comes with the artery branches so that is what that option was chosen. I also wondered that since this is donor would he need rejection med's and he explained that since this is not a complete working part it is not needed, so that is good. I also asked if there is ever a wait for a match. His response was that, it had happened but once a date was chosen they would be looking to see if there was a match and if there was it would be reserved for him. On this.... I have always thought that being a donor was good, that I would do it myself but now.... oh thank GOD for the decision the donors and their families made. What a bittersweet topic...

So we have 3 weeks... This weekend is our Team Brave Hearts golf scramble benefiting AHA. I believe next weekend we will go away for a long weekend to just do something really fun and be together - I'm thinking Indianapolis to their zoo, then stay at their hotel with indoor waterpark and then to the children's museum the next day - Evan will love that. I believe that on Sept. 22nd we'll be going to the cardio so he can explain things to Evan and prepare him. If you see us between now and then please don't mention this in front of him. We do not want him to be worried and scared for 3 weeks. We have agreed that the cardio will explain everything to him and then that will give us a week to deal with the emotions as a family with him. September 26th will be pre-op. September 27th is our heart walk - I'm sure that will be a very emotional day. That will bring us all too quickly to September 29th.

Please pray for Evan... pray for us as parents to be strong... pray for the Dr.'s and nurses that will be caring for him and for the overall success of the surgery. It means so much to get the notes, calls, emails, etc. I'm saying this now because I seem to isolate myself but it truly means so much when someone asks and shows their concern for Our Little Braveheart.

Thursday, September 04, 2008

Song of my heart

The year Evan was born I was introduced to a local family whose son also had the same CHD and although I wish we hadn't met on those terms this family has become family to me. (By the way this awesome family is welcoming baby #2 - Jameson, through adoption from Korea hopefully this week!!!)
We formed a group with another family - Team Brave Hearts and this has grown now to 12 families and we are gearing up for our 4th AHA Heart Walk and giving our 3rd Golf Scramble this Sunday. It gives us an outlet to raise awareness and join our families together for a good cause.
Every year I make a picture show of all the heart kids involved and it plays to music over and over at the Country Club so the golfers can see why they are there. I'll try to post it here.
There are several songs that play during the picture show and "He's my Son" by Mark Schultz plays during Evan's pictures.
There is one song this year though that seems to speak my heart and I wanted to share it - Celine Dion's "Miracle".

You're my life's one miracle
Everything I've done that's good
And you break my heart with tenderness
And I confess it's true
I never knew a love like this 'til you

You're the reason I was born
Now I finally know for sure
And I'm overwhelmed with happiness
So blessed to hold you close
The one that I love most
Though the future has so much for you in store
Who could ever love you more

The nearest thing to heaven
You're my angel from above
Only God creates such perfect love

When you smile at me I cry
And to save your life I'd die
With a romance that is pure in heart
You are my dearest part
Whatever it requires
I live for your desires
Forget my own, your needs will come before
Who could ever love you more

There is nothing you could ever do
To make me stop loving you
And every breath I take Is always for your sake
You sleep inside my dreams And know for sure
Who could ever love you more

http://www.youtube.com/watch?v=VGNQ9bu1mDk

Wednesday, August 27, 2008

Received "The Call"

The heart board meeting was this past Monday and all the Dr.'s were there and were able to discuss Evan and the options. The plan is to do a Homograft which is a donor valve and artery. This sounds like a big surgery. (Aren't they all?) The surgeons thoughts on the other options were, that if he was in there why wouldn't he be fixing the problem instead of patching it over to be done later. Potentially he said this could be forever, although that is rare. Usually this needs to be replaced in 10 years, so in his late teens. There is also a need for it to be replaced sooner if it calcifies. We are waiting for a call from the surgeon to decide a date but the cardio feels that fall break would be best for Evan to keep his routine as normal as possible, and that is Oct. 20th.
We have been living life pretty normally for the most part - how can you not when he doesn't know and we have been living normally (our normal) pretty much since his 1st surgery. When explaining things to others I often feel like I'm talking about an episode on Hopkins and not my child. Do you know what I mean? You talk about it with a straight face and then walk away and think about it and cry. Honestly, I think I've done very well - much better than I expected myself to be doing. I think Evan being the age he is has helped... How can you worry about this when you have this child running and jumping and singing his favorite song, Taylor Swifts "Our Song." (I'll have to record him and post it here... it is so cute!) I'll post some pic's once we get home.
Anyone reading this have experience with homografts??? You know me... I'll be researching this.

video

Tuesday, August 12, 2008

Kentuckiana Heart Walk 2008 - Team Brave Hearts

All of you that keep up with Evan's blog have been touched by CHD's in some way, either by Evan or your own child. I wanted to post a link to his donation page for the American Heart Association's Kentuckiana 2008 Heartwalk. This is our 4th walk and we will be walking again this year with our heart family "Team Brave Hearts". Our main goal in participating in this walk is to raise awareness of CHD's and funds for much needed research. If anyone would like to donate, his personal donation page link is:
http://heartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=255198&supId=225090306

Want to help Team Brave Hearts raise money for AHA by buying books for your own kiddos? Go to this fundraising site hosted by Usborne Books and place your order. www.ubah.com/BF25615

*This will stay at the top of our blog until the walk - see updates below.

Lets add a concussion to the mix

So.... Monday night we get home, I make dinner, we eat, take our bath's and sit down for a quiet evening of watching the Olympics. Eric's Mom had made some yummy cake so we were going to have some dessert. Eric was bringing the plates and coffee into the living room. Evan saw Daddy coming around the corner and ran and did a kung fu move and socked Eric in the belly. Eric was telling Evan that we do not hit and to be careful when someone has a drink. Evan was crying and pretending that he had never been told this before and came running for Mommy. He was upset that Daddy had scolded him and I was telling him that he has to be disciplined. He cheered up and we were playing back and forth.... next thing I know Evan jerk's away from me, head first, with all of his 50 lbs. straight into the coffee table with his head. The cracking sound made me scared to look at his face when I grabbed him up. Seriously, I just knew I would see his skull or brains. I got his hands away and immediately there was a bump coming up that went to baseball size in seconds. As I said before, we had just had our bath's so everyone was in pj's. We got dressed and out the door in lightning speed... I got an ice pack and held it on his head the ride to the Dr.'s and at one point during the 3 minute drive Evan told me he couldn't see.... I panicked and asked him to tell me how many fingers and he was right... I asked him why he said he couldn't see and his response was that the ice pack was over his eyes, oiy. The Dr. kept us there for a few hours to check his vitals and make sure he hadn't fractured his skull. Thankfully it is not that serious and we were able to come home as long as we put ice on it for 5 min. every hour and woke him every hour. Fun night. Seriously....


Check out this pic from this morning - it was down to egg size.


The Dr. said he would probably have two black eyes and told Evan to tell people who asked that, "You should see the other guy." If he only knew, read the last post.

Going Back

While it is still fresh on my memory I wanted to go back a bit and post about how we told Evan and how he handled it.

I think I had talked about it before but I knew that Evan would need time to process what was going to happen at the hospital and that we would need to explain it to him a few days before to give him that time. I dreaded telling him and struggled with what to say. There really isn't much to say to make a cath. sound good. I was able to tell him when he had his scan that we would be with him the entire time and that if he was brave we would go home and not have to stay. On the way home the Monday before the cath. I secretly hoped Eric would work late so I could blame not telling him on that I wanted him to be there, no such luck. After dinner I was still sending silent prayers of what in the world I was going to say.

Then it just came to me. I remembered a book and hat Evan had received from the hospital at his OHS called Hero Club - http://www.happyhatsforkids.com/intro.html . Evan likes to pull this book out every once and a while and is very proud reading it - knowing the book will tell him that he is a member of the hero club. This little book tells about a child going into the hospital scared and is given a hat which all the other kids say has magical powers and to put it on. It goes on to explain certain hospital procedures (x-rays, blood draws, IV's, medicine, etc.) and what to expect. The hat comes to life while the child is asleep in surgery and they go on an adventure and he explains that it isn't the hat that is magical at all but that the child was a hero because he was brave and so on. After reading this to Evan I told him there was a reason I had read it and that he was going to the hospital for a cath. He didn't cry... he did ask several questions. One question was, "why does my heart need help?" I looked at him for a moment and remembered the straws I just saw in the kitchen drawer and went and got one and told Evan to blow through it. Then I pinched it and told him to blow through it again. I told him he has an artery that is like a straw that takes blood to his lungs from his heart and it is a little pinched and that they needed to blow through it. Evan seemed okay with this although he did share with a few people that he was going to the hospital to have his straw blown into.

The next few days were full of behavioral issues. It was hard seeing him be so aggressive (more so than usual) and struggle to deal with emotions. Evan's side of one situation was that before T-Ball he and a few friends were running and they started chasing him, he asked them to stop and they didn't so he was starting to cry and they laughed. All we saw was Evan with his arms around the kid taking him down. He said they hurt him and that he was in turn hurting them. He doesn't know how to "play" the game back, he only knows how to respond physically. He doesn't get that at all - he's very aggressive but very tender hearted. We spent an evening this week role playing and using words instead of actions to stop someone from getting a kick out of him crying.

I'll post again later with pictures on how we spent the night last night. He is going to send me to the looney house I'm sure.

Tuesday, August 05, 2008

Unsuccessful Cath = Surgery #2

We are home, tired and incredibly sad about how yesterday turned out. Evan spent 7 long hours in the cath lab. The longest any of his procedures, including his OHS, has ever taken. Eric & I, along with other family were on pins and needles the entire time. It seemed as if complications were the word from the get go. I hope I understood everything and can document it all correctly. The main vein that is usually what is used for the cath had develped thrombosis (clotted) from how many times it had been used I believe. They have other options but none that are as good. So from the very first call from the lab we were told they were having difficulty. They options they had were going through the right leg or the neck but ended up gaining access through the femoral artery in the left leg and was able to cross over into the arterial artery. They then called to say they were getting pictures and measurements and that the right pulmonary artery was measuring 12.5mm and the left with the stent 7mm so the plan was to begin the process to dilate the stent. We received many calls after that saying they were trying to guide the wire into the stent and were having difficulty finding a wire flexible enough to make the crazy turns that Evan's anatomy has in his left pulmonary artery - explained to be a very diffult S shape. On wire #7 they called and said they were bringing in another team of Dr's. We receieved another call within minutes after a team of 4 Dr.'s began working that they had guided wire #8 into the stent and were going to begin leading the balloon in. There were smiles through tears in the waiting room and the nurse seemed like a stressful situation had ended with a good outcome. We were still celebrating when the last call came that said, it failed. As soon as the began trying to lead the balloon in the wire came out and after several attempts the team of 4 decided that there was just no way to get the wire and balloon successfully through the S curve of the left pulmonary artery to dilate the stent. We were asked to come to the dreaded room of bad news and our tears turned into stares of disbelief. I kept waiting for a nurse or Dr. to come around the corner and say, "We are in, it's okay." Instead, the tired Dr. came around the corner looking defeated and disgusted. He explained with pictures that showed how many times they tried over and over and over to get a wire, any wire to follow that complicated S curve and enter perfectly into that narrowed stent and everytime the wire would not cooperate. The dreaded words, "surgery." He explained that this is our only option and that it would need to be soon. There are a few different options for the surgery although I won't go into them here until I understand them more myself. They are presenting Evan to the surgeon next Mon. at heart board and he will make the final decision on what would be best for Evan. Please pray for us... I cannot even begin to come to terms with facing surgery again.
We are so thankful for our Brave little boy. Evan is doing well - he woke up and wanted to go home but had difficulty peeing as he had been cath'd during the procedure and it burned. Once he did that through tears, we were able to leave. We got home late last night, carried Evan to bed and slept. Evan woke up at 5am and got sick. By 7 this morning we were showering and trying to remove the nasty bandages and packing from both legs as it seems both were attempted. I believe it took an entire hour but he is feeling much better now.
As I said, the board will be discussing Evan's case, I believe, next Monday. I know that there is a reason for all of this, although it doesn't seem fair at this moment. One of the options that were discussed yesterday could in fact make it possible for this to be the only surgery Evan has to face, the other options would require another surgery at adulthood. Please pray for the decisions being made by the team. Please pray for us to remain strong in our faith. Please pray for our hope to not diminish as we have been given all reason to believe the outcome of this to be fine although the road will be hard.

Wednesday, July 23, 2008

Cath. Date

The Dr. called with a few options on cath. dates and we decided that although it sounds so soon having it done before school starts would be best. The pre-op will be on Friday, Aug. 1st and the cath. on the following Mon., Aug. 4th.
So... I guess on Monday evening we'll tell Evan and begin preparing him. He did so well with the scan but, we were able to promise him things with the scan. We were able to tell him if he was brave and got the IV he could go without the Versed up the nose (which he hates) and that we would be able to leave and do something fun. There is nothing to promise him with the cath. All I'll be able to tell him is what will happen not options that if you do this it will be better. He knows now what a cath. means and will immediately begin asking I'm sure about Versed. I believe Versed will be necessary as without it would be mean walking into the cath. lab with no meds if he didn't have it and although he is strong I'm sure that would be hard. He will ask if he has to be without us and yes he will when he wakes up in recovery. He'll ask if he has to stay the night and yes, he will have to stay 24 hrs. in ICU. He is 4 though and I have to prepare him, I can't walk into the hospital and him be blindsighted by what will happen. This is going to be tough.

Tuesday, July 15, 2008

Mom's Brown Co. Birthday Trip

Mom's 65th B-day Getaway (C.D.)

My brother and I treated my Mom with a weekend getaway to Brown Co. IN - just the 3 of us, for her 65th Birthday. We had a blast and I think we laughed the whole time we were there. My Mom is my very best friend. I can not imagine what I would ever do without her. She is the person who knows me and my secrets and still loves me. Evan and his Mamaw share a connection and I'm so thankful for the memories they are making together everyday. It has been such a blessing that he is able to stay with her during the work week. I loved our weekend.

P.S. something funny we saw in a store that I can't quit laughing over (I said I wouldn't post this and here I am, posting it) - "Some people skinny dip, we chunky dunk" OMG... isn't that the funniest thing.... Michael, your laughing, aren't you??? Every laugh seemed to have to do with chunky dunk...

Thursday, July 10, 2008

Advice Please...

I would like to request some advice on a situation I'm dealing with from all of you...

Evan is a rowdy, lively & crazy 4 year old who when it comes to feelings is ultra sensitive. I attribute this to his sheltered life - especially in the first few years before preschool. He is still mostly only around our immediate family and a few close friends other than during school that he started this year.

Evan is very sensitive of me, his Daddy and his Mamaw. We are his. He is known to get mad it me if I look at a picture of another kiddo and say, "awwhhh." He pouts and asks me if I like them more than him. We have had many long conversations about this and how it isn't nice and that I'm always his Mommy and he is always my boy and how much we Love him. It never seems to help.

If you are Evan's friend, you are his friend always. He doesn't understand why you would ever be his friend today and then not want to play with him tomorrow. We were in a situation recently (if you are reading this and you were there, kids are kids and no hurt feelings. Just trying to get advice for my own kid to handle these situations better) where we were at the park with a big group of friends and acquaintances. One few of Evan's closest friends was there but for whatever reason was not wanting to play with him. I'm thinking that since they see him more they wanted to play with new kids or just the classic version of 3 is a crowd. I don't know. Evan could not understand this and wasted his park time running around after this friend asking, "why are you not playing with me?", "can I play with you?", "what's wrong?" He went on to get this kid's dad and said please tell him to play with me. The kids would be told to include Evan and then according to Evan run off once the adult was gone without him. Evan cried. He sat on the bench and cried. (I was in a meeting just outside the playground and had friends inside the playground watching him. I could see this going on but couldn't leave the meeting.)

Last night I wanted to talk to him about it. I told him that when someone isn't being nice or doesn't want to play to walk away, find someone else to play with or play by yourself. I also said that I'm sure had he done that, that these friends probably would have joined him eventually. That because he cried it turned into a game for them. That kids will think he is a crybaby if he does this. Evan got so upset with me. Told me that I don't understand him. He said he is not a normal boy who can walk away (where did he get that?).

I'm so not this way and almost feel like maybe I'm being cruel trying to get him to be tough when it comes to feelings in public. But... I hate to see him being the kid running, begging for someone to play with him.
Advice?

Wednesday, July 09, 2008

Sneak Peak


We have had our first meeting and are starting our fundraising season for our local AHA Heart Walk, which will be on Sept. 27th. We were missing a handle of families last night but... isn't this wonderful - all these beautiful children together for a cause. We are excited!!!

Monday, June 30, 2008

Thursday, June 26, 2008

Back to the cath. lab

Dr. McOmber called and said that he met with the board on Mon. evening and that I'll be getting a call from Dr. Kim to schedule the cath. Dr. Kim is replacing Dr. Recto and has been training with him for a year or more... Dr. Recto is moving to New Orleans.
He said the same thing we talked about before... he doesn't want to miss out on time when they might regret it in the future... Dr. Kim thought that the decrease in %'s the scan showed (80-20) needs a cath. to check things out and either dialate the stent or insert another one, Dr. McOmber agrees. He said Dr. Kim is very busy, summer surgeries trying to get in before school starts and before cold/flu/RSV season for little ones.... But that, Dr. Kim's office will be calling me to schedule it. Dr. Kim wants to review Evan's file, past cath's and past scans before scheduling the cath, so he wasn't sure when I would hear from him but soon.

So... the waiting begins again. I was mostly expecting the cath. but was going to be super happy if they thought it could wait. As always I just want the best for Evan and have to trust God and our beloved Dr. that this is what is best.
In the meantime... we will continue to enjoy summer. Hope all of you are as well.

Monday, June 23, 2008

Baseball weekend

I still haven't heard from the board... Dr. McOmber called last week to let us know the board meeting had been cancelled for the week and they would meet today so, I should hear from him tonight or tomorrow concerning cath or no cath.

We have been busy... T-ball practice is on Thur. nights and then the game is Sat. mornings. We love the time we are spending with friends though.

My brother and his family were taking their other nephew, Nick, to the Louisville Sluggers Field to watch the Riverbats play Sat. night and invited us along. Evan loves Nick... bugs the heck out of him, LOL. It was sooo hot... but when the sun went down it was super nice and enjoyable.








Sunday, June 15, 2008

Happy Father's Day!

We are busy, busy and having lots of fun! I'm loving the time we've been able to spend with friends and family this past week or so and the summer is going to be so much fun... Evan started T-Ball and we are spending Thur. evening with his best buds and then again Sat. mornings for games... Go Almond Joy's, LOL!!! It's HOT but... FUN!!! Remember the commercial for Almond Joy's - maybe I shouldn't have taught it to Evan... Eric said it is not appropriate that he is singing "Almond Joy's got nuts..." I hope they don't play the Mounds. So, T-Ball twice this week, swimming at Nana's (my BFF of 30 yrs. Mom's), ending with a night at the Drive-In's - we had a fun week! We saw Kung Fu Panda (really good) and Indiana Jones (can you believe it is Evan and Eric who stayed awake for BOTH movies?).

It has been sooo hot and Evan had been wanting to get his hair all cut off like his Daddy's so, what do you think? I was so scared but... I really like it! We got a pool for Mamaw's to beat the heat... don't you all remember the pools we had as kids? You blew them up yourself and filled them with water or even the hard plastic kind? We have nothing like that available here - it is all these huge pools that took even an electric air pump an hour to blow up and then another hour to fill half way with water.... by the time you get done you wish you could put it away but, with 2 hrs. of work... it is getting a plastic cover... we might as well gotten a real pool, LOL. Evan loves it.

One of our heart friend families here in Lou. has been trying to adopt from Korea for well over a year and I'm so excited to say that their baby will be home sometime this summer and am going to ask permission to post their new additions pic here. I can't wait!!!

Happy Father's Day to all the Dad's out there! This blog I wrote back in 2006 about my guy's still rings true - I LOVE YOU ALL!!! http://evanbraveheart.blogspot.com/2006/06/men-in-my-life.html

Monday, June 09, 2008

Dr.'s thoughts on scan

Just talked to Dr. McOmber.... he said he wasn't really surprised that the LPA's % of pressure that it sends to the lungs had gone down again... Evan is growing - everything is growing except for that Left Pulmonary Artery - which is the same size since they stented it in Mar. 2006. He is not sure if it is time for another cath. so he is taking it to the board to get the other Dr.'s, especially Dr. Recto the angio specialist in our areas that did his stent, opinion. He said the reason for this would be to prevent Evan's health from ever being less than his 100%.... that we should not see Evan get worse b/c they are keeping on top of things with the tests/scans and caths. He also said this continious drop of 4-5% pressure a year is normal since his is growing and does not mean the conduit/valve replacement surgery is sooner than they originally hoped, that they still hope to hold off until his is larger and could possibly get an adult size with 1 final surgery - or who knows how technology could change before he needs that. That as long as they stay on top of it with scans and caths we can delay surgery and hope for a less invasive approach by the time it is required. He said he thinks Dr. Recto will want to do another cath. maybe not tomorrow but, maybe in 6 months or after next years scan and either dialate the stent or place a stent inside of the old stent expanding it... He said he would be talking to me later this week after he presents Evan's scan to the board at their weekly.


We spent a nice weekend together, playing T-Ball and going to the Circus. I had a not so nice ear infection and at my follow up for broncitis got more meds for that and also told broncitis had gone into pneumonia... Am I ever going to get over all of this??? Dr. said something about rest... drinking lots of fluids... staying out of the heat... I'm wondering if we live in the same town with how hot is has been and also if they have any children, LOL.

Friday, June 06, 2008

Vent. Scan 2008 Results

I just got the results last night, (was beginning to get worried that the hospital lost the test since they took so long to forward it to the cardio - oh how mad I was going to be, after what he went through if he had to do it again.) right before Evan's first T-Ball practice for the year, man it was so hot. I'm not sure what the results mean as another Dr. called and gave them to me b/c Dr. McOmber is on vaca. until Monday. The results were 80-20.... they were 85-15 before the stent and then the stent raised it to 71-29 and then last year is was 76-24. So... it has been worse - right before the stent in '06 but... they were concerned last year with the 76-24 and it is another 4%... seems to decrease on the left side 4-5% every year.... although they did a cath. last year and didn't do anything so maybe this will be okay... I really have no idea until I talk to Dr. McOmber.

This hasn't been the best of weeks for me.... I've been full of anxiety waiting on these results and now that I have them, I can't talk to Dr. M until Monday. We also got more upsetting news that the house we had held a contract open on since our house contract that fell through, in hopes that when our house eventually sold we could move in, asked us to release them from the on-going contract. I can't blame them as it has been since March but... disappointing for us. I know this means there is something better for us... that maybe this house wasn't meant for us, it is still hard once you set your heart on something.

This is also Eric's busy time of year and we practically haven't seen him since last Friday. We miss him and it is hard for Evan when he isn't home at night.

We have planned lots of family time this weekend! We are taking Evan to the Ringling Bros. and Barnum & Bailey Circus tomorrow!!!