Wednesday, December 22, 2010

Merry Christmas!

We wish you and your family a very Merry Christmas.

We have been blessed beyond measure in 2010.
Eric, Sarah & Evan

Monday, December 13, 2010

Update on Mommy...

I just finished my 6 month/year end appointments. I can't believe it has been 1 year since my MS diagnosis. My MRI scans showed that there was no change - 12 lesions remained the same so... it appears my shots are doing their job. For that, I'm thankful as with all the stress this year I was afraid it would be worse. I take a weekly intermuscular injection called Avonex that I administer myself on Friday nights. I drink lots of water that day and set the shot out around dinner to get to room temperature and take Tylenol PM and go to bed once I give myself the shot. The next morning I feel very achy which is the flu like symptoms from the shot. If I'm able to rest and take Ibuprofin Sat. morning, by 10 I'm ready to go. Mostly my legs and feet hurt and at times go numb. My eyesight also does funny things here and there. Anytime I'm extra stressed something happens. During Evan's last hospital stay during the first day I started experiencing this horrible pain in my hip and it lasted for about a month. Hospital stays have been when I've noticed the big things - numbness, vertigo, etc. So... as far as a 1 yr. post diagnosis update goes, my MS has NOT gotten worse. The shots are not fun but, also not horrible (the needle is 1 1/4" and 23 gauge (YIKES). The "it's not cancer, just MS" phase has worn off and now "it's just MS". Other appointments were for a 6 month follow up with a lung Dr. concerning the cancer scare. The CT Scan proved that it wasn't anything to worry about which is good because worrying makes MS worse, sigh. The urologist showed that the 10 stones I've had for 3 years are all still staying cozy in my kidney but growing so it was decided that lithotripsy would be done to break them up. Last Wednesday I went in outpatient surgery for the first of 2 surgeries that will be needed to get rid of these things, as they only do 1 kidney at a time. The surgery was more than I thought it would be. They did my right kidney and zapped 5 stones. When I woke up it felt like I had strep throat and someone had kicked me in the back. They said they had a hard time with the tube and it looked like someone had cut my throat up. It worked though... I've been passing little stone fragments every since. I go in for my follow-up tomorrow and to schedule the 2nd surgery for the left kidney. Might as well get it all done this year! So, that's how Mama has been doing as far medically goes. Life is Good! Well... Life is Hard but, God is Good! And I mean that! I can't tell you how many times the lyrics to the song below has come to my mind the past few months.

You turn the key
Then close the door behind you
Drop your bags on the floor
You reach for the light
But there's darkness deep inside
And you can't take it anymore

'Cause sometimes living takes the life out of you
And sometimes living is all you can do

Life is hard, the world is cold
We're barely young and then we're old
But every falling tear is always understood
Yes, life is hard, but God is good

You start to cry
'Cause you've been strong for so long
And that's not how you feel
You try to pray
But there's nothing left to say
So you just quietly kneel

In the silence of all that you face
God will give you His mercy and grace

Jesus never said
It was an easy road to travel
He only said that you would never be alone
So when your last thread of hope
Begins to come unraveled
Don't give up, He walks beside you
On this journey home and He knows

Life is hard, the world is cold
We're barely young and then we're old
But every falling tear is always understood
Yes, life is hard, but God is good

Tuesday, November 30, 2010

A little Elf Magic!!!

Have any other families done this?
A friend of ours did this last year and it was such a hit that we decided to do it this year. So... a week or so before Thanksgiving Evan wrote a letter to Santa requesting that he be allowed to adopt an elf for the holidays. You keep the Elf until Christmas Eve and are supposed to share with it what the holidays are all about to you and your family. During his stay, your Elf does mischievous things when you sprinkle magic snow on him at night. I loved the idea of making it more about memories than gifts and the letter that comes with the elf says that "the gift of Jesus is more special than any gift on Santa's sleigh." Evan was so excited when we sat out the crackers and water to attract the elf to our house Thanksgiving eve. When we woke up on Thanksgiving Day and Jingle had arrived he was ready to show him all about Thanksgiving, lol. We have had a blast with the nightly pranks - I think Eric and I are just as excited as he is!

Tuesday, November 16, 2010

Team Brave Hearts

We have been busy! Evan dressed up in his Army man costume and we went trick or treating Halloween night at a local church. He made the cutest little Army guy, don't you think?

We then took our annual trip to Huber's orchard with my Mom (Munc got to join us) and as you can see - Evan couldn't stop to take pictures - he loves playing on all the stuff when we go there. We love eating all the good food and buying some to take home!

Our support group, Team Brave Hearts has had a big year. There are 20 families that are involved in our little group and out of those 6 of them had kids that endured surgery since summer began, us being one of them. We have one little Brave Heart - Annie who was just admitted this past Thursday and put at the top of the transplant list. I don't know what I would do without these families and their support. We have all become so close and I'm so thankful for each of them. So... it's been busy for surgery reasons but also we as a team have been feeling the need for change so this year after many meetings and group talks, we shifted our focus and signed a contract with Kosair Children's Hospital Foundation. We have just begun our partnership with them and we are excited!!! We decorated our first tree as a team for the Festival of Trees and Lights - We think it turned out beautiful! Can't wait to here how much it sold for.

I attached our letter below - why isn't there an attach document feature on blogger??? Anyway... I wanted my blogging friends to know what I was up to! We had our 5th annual Team Brave Hearts golf scramble this past Sunday and it was a success! We haven't put our earnings on our website yet as we have to pay the golf course, etc. but for the late date, we did well! We are planning events throughout the year and like I said, I'm just really excited!

To the friends of Team Brave Hearts,

We hope this letter finds you well. Team Brave Hearts has undergone some exciting changes we would like to share with all of our supporters. In the past we have focused all of our fundraising efforts on supporting the American Heart Association. This money went to support national research for many heart related areas including, congenital heart defects. We are glad to have had a connection with this great organization.

Our next focus is on something that we will be able to feel locally and something that will impact many of our own team members. Caring for the medical needs of children with a congenital heart defect requires a specialized team of professionals - a team that exists at Kosair Children's Hospital. The biggest need this team has right now is an ICU that is designated for heart patients. The number one concern after heart surgery is infection and a designated ICU would isolate heart patients from those who may have infectious diseases. Over the next five years our fundraising goal is to contribute $100,000 to help make a heart ICU at Kosair Children’s Hospital a reality.

We also are committed to connecting and supporting new families on this journey. We will be making care bags that will be given to each new heart family at Kosair that will include items to make the stay a little easier and information on how to contact us for support.

To make this happen, we have teamed up with Kosair Children’s Hospital Foundation. Team Brave Hearts wants to offer support in making the advances in the field of children's hearts possible. Our goal, along with Kosair Children's Hospital, is to ensure world-class medical care for children facing congenital heart defects and needing specialized heart care.

We are so excited about what we can do as a part of Kosair Children’s Hospital Foundation and we would like to ask for your continued support as we take this first step on our new journey. Please join Team Brave Hearts in funding the programs and equipment that make it possible to help children win the fight against congenital heart defects. Every child deserves the chance at life.

Please make a donation today to Team Brave Hearts and Children's Hospital Foundation by visiting:

Thank you for your continued support,

Team Brave Hearts

Wednesday, October 27, 2010

Scar Infection & Halloween Care Bags

The Wednesday night after Evan's Halloween party I noticed a red knot coming up under his scar towards the bottom of it. It didn't feel warm to the touch but I was worried and glad we had a cardio appt. checkup the next day. At the appt. I told the cardio about it and he looked and said to keep an eye out and if it changed at all to call him. That he thought all would be fine but that he might need antibiotics. He mentioned bone infection but said this usually happens much sooner after surgery. His appt. other than that went great and all looks good. His cardio encouraged me to try to quit waiting for the other shoe to drop and that Evan was doing wonderful. That Sunday morning Evan woke up and at the bottom of the red knot it had turned black. This was a change but since it was Sunday and I felt like I'm too big of a worry wart I decided I would call first thing Monday. I called the cardio Monday who referred me to the surgeon. I called the surgeon and talked to his nurse and told them I had taken a picture of it that morning. She asked me to email it to her and that the surgeon was in surgery but she would fwd. it to him and he would look at it and they would call me back. I anxiously awaited his call and when he called at 1:00 and asked if I could have him there be 2:00 I knew it was serious. I got Evan from school and took him down to the hospital and the surgeon and his assistant were both waiting to see him. They both took a look at it and agreed that it wouldn't require re-admission (YIKES didn't know this was a possibility) and that it looked like a superficial skin infection. They started him on 500mg cephalexin every 8 hours. I explained that we had scheduled a vacation in FL and were supposed to leave that coming Sat. morning and did they think we should cancel. Since it was only Monday they said not to cancel it yet and to check in with them on Thur. To text them a picture of what it looked like and we could decide then. I didn't know I would be on texting terms with Evan's surgeon and nurses. It did seem to be getting a little better each day but was slow progress. I texted a picture on Thur. and they said it was improving so that the medicine should be working and that I was just going to have to go with my gut on if we went on vaca or not. They felt he was better and would be fine. I called Evan's cardio and he too felt we should go - and if it ever seemed to not be getting better to come back home. I was a nervous wreck!!! I did not want to be the party pooper and cancel vacation but Evan's health comes first. It seemed much better on Friday and thankfully the salt water must work wonders because after the 1st day of vacation his scar looked like it did pre-infection! I'm so glad we didn't cancel our trip and I'm so thankful Evan's infection is gone! I'll be posting vacation pictures soon! It was much needed and wonderful.

Evan's Scar Monday Morning

Evan's Scar Thursday Morning

When we decided to for sure have our Halloween party this year Evan said, "Hey... I know, for admission to the party people should bring bags of treats and we will put them in bags and take them to the kids in the hospital!" We thought it was a wonderful idea and were proud of him for thinking of it himself. We added that on the invites - that if you would like to bring a bag of goodies we would be making Halloween care bags to deliver to the hospital Halloween week. I put brown paper lunch bags next to each pumpkin so the kids at the party could decorate the bags that would be taken. A few of the older kids at the party volunteered to fill the bags for us during the party so all the work was done and the bags were ready to go. So... the day after coming back from vacation Evan's idea was acted upon and Halloween care bags were delivered to the kids on Evan's floor at the hospital. He did so amazing delivering those. I was so very proud of my little guy. We met with the nurse manager and I pulled a wagon full of the treat bags (they had candy, pencils, erasers, bubbles, stickers, cookies, etc. in them) while Evan walked with her and hand delivered the goodies to each room. Get this... we had 30 kids at the party so 30 bags were made and there were 30 patients that day on the floor! Anyway... Evan was so kind and thoughtful at each room. The nurse manager would knock on the door and say... hello I'm the nurse manager and this is Evan and he is a former patient of ours and he would like to give your child a Halloween treat bag. They would always say yes and Evan would say things like - "I missed my first Halloween while I was in the hospital and I got a treat bag and wanted you to get one too - or - I hope you like your goodies and I hope you feel better soon." He did so so good and when we would leave a room he would say, "Mom this feels so good!" I Love this kid with all I have. We are so blessed with this little guy.

Last thing... there were tornado warnings here yesterday and the school had to go to shelter for 2 hours. I knew Evan would probably be very upset and I was right. He called and told me he cried the whole time and that his teacher made him feel better by patting his back and telling him it would be okay. He said he was so worried that the tornado would hit them or be where me or his Daddy was. He said he kept praying that we would all be okay. Then he said when it was over he cried again because he was so happy!

Next post will be vacation pictures!

Friday, October 01, 2010


I walked into our bedroom this morning and almost walked right into and flipped over this - .

When Evan was born we were handed a cardiologist. We have since switched cardios. This first set of cardios scared me to death. I feel like if we had our cardiologist we have now things would have been much different. I feel he would have reassured me and set me straight on some of my fears. I knew nothing about hearts and loved my baby so much. I was so afraid of TET spells and had anxiety attacks when he wasn't near me. I took an extended leave from work and kept him in my arms day and night. I cradled him in my arms at night and woke up checking his nailbeds and lips - listened to his heart - checked his breathing - all through the night. I was exhausted. We had such big thoughts of how things would go with our first baby. A bassinet in our room and a crib in another room. Of course after a few weeks our baby would be sleeping through the night in his own room. Well... here we are. Our *baby* is 6 and he is still in our room. Honestly, it is as much my fault as it is anyone's. We transitioned to his room a few times. Then he would have a heart cath or a surgery and would be scared and cry. I would find myself being afraid and having panic attacks again. It was so much better to bring him with us and wake up to look over and see him sleeping with pink lips. Evan has always wanted us to be right there. I'm sure this is because I/we always were. After his most recent surgery he seems to need that much more. We even went to counseling recently. The counselor (who is an expert on counseling kids with serious health conditions) told us if we can give him this comfort and reassurance that we are and aren't pushing him than he will do it on his own terms. Evan is now 65lbs. and 47 inches tall. But he is still my baby and I will always do what I think is best for him. Always. No matter what. Another heart Mom recently said it best... "We are our kids advocate. This is not a job for wimps. I'm afraid I've disarmed people in the process but I will ALWAYS let you know what I think my kid needs and deserves regardless if i pisses you off or not. Parents of special needs kids are so often misunderstood. People see us as difficult. Well, maybe we are, but at the end of the day we just want our kids to have the same success in this world and same opportunities as everyone else without feeling like the oddball. It's simple, right? Be kind to us, our days are not easy. Be understanding, have patience and accommodate because someday, it may be you and then you'll wish you would have." Thanks Kelly... well said.

Tuesday, September 21, 2010

Getting back to normal

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

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

Thursday, September 09, 2010

Back to Work/School

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

Thursday, September 02, 2010

School & Coughing

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

Monday, August 23, 2010

Home Sweet Home

Evan told the Dr.'s at preop and all his appointments that he was going home in 3 days and 3 days postop that is exactly what we did. This time was different. Evan did amazing and was the best patient. He remembered how it was before so there wasn't any telling him this will only hurt a little. On Tue. he was ready to be extubated about 2 hours before it actually happened because his blood gases kept coming back high. He kept squeezing my hand and pointing to his mouth and mouthing OUT. It hurt to see him do that over and over and have to keep telling him that in a minute they will. He had little tears just streaming down his face and would ask again. When the guy did finally extubate him Evan immediatly said, "thank you." The guy said that made his day. After that the night was spent begging for drinks and only being allowed to suck what water he could from a sponge. He was much happier when they came in at 4 the next morning and gave him a drink. Rounds started the next morning and I believe he didn't remember the 15 or so Dr.'s and nurses that come in to his room during rounds. His little lips were just trembling. Once most of them left he told his cardio in a quiet, scared little voice, "thank you for fixing my heart." Bless his little sweet self. Then the morning started to get busy with pacer wires removed, central and arterial lines and the foley cath. He was so anxious. Once we got to a room a friend reminded us of some of the things the child life group has and they had our room ready with a calming fishy light and this light that put stars and clouds on the ceiling. This helped him calm down quite a lot. He was worn out. He enjoyed short visits but seemed annoyed when anyone was there for long. Like I said, with his age I guess there was a lot more anxiety. The next day he was anxious from morning rounds when it was announced that chest tubes would be pulled that day until they were actually out. He felt much better after that and we went on a good walk. I forgot to mention that there was NO trouble peeing this time around. Since we had such issues last time we requesed that a urologist put in the foley cath and that made the difference. Once he got up he was done with his bed and spent the rest of the time in one of our chairs playing with one of the many toys he was given. On Friday morning at rounds the Dr.'s asked what Evan wanted to do that day and Evan said, "go home" and they said, "sounds good." We were packed and out of there by lunch time. Evan had been itching all day Thur. and Fri. and right before we left we noticed some bumps on his back. We weren't sure if it was the sheets and pillow cases causing his skin to react to their detergenct or the pain meds. On Friday night he seemed very bothered by the pain meds so we tried skipping a dose and have never gone back to taking them. We ask him often if he is iny pain and he assures us he feels fine. He is taking ibuprofen and lasix. They expect to stop the lasix on Thur at our postop apointment. When we got home we had a nice surprise of welcome home banners and confetti - Evan was so happy with that and actually cried happy tears to be home. Being home has been wonderful. The biggest issue we have had is to try to make Evan slow down and not do things that could hurt himself. He is ready to go... ready to play... ready to run and jump and go to school. He is ready for things to be back to normal and isn't happy that it isn't happening fast enough. So... that is where we are at. Enjoying being home and trying to make him happy with less active activities. Thank you everyone for your prayers... Evan amazed everyone and I know God protected him and brought him through this with flying colors. Thank you to our family for being there with us during his surgery and bringing us food and being understanding when Evan was and wasn't ready for company. Thank you to our friends who brought Evan goodies and us food. Other than dry cereal and jello the only things Evan ate while we were at the hospital was soup Mamaw brought and a ham and cheese sandwich that Shannon gave us from Jimmy John's. We feel so blessed to be this amazing little guys parents. Now... I've got to get back to keeping him busy - without jumping, pulling or rough play, lol.

Friday, August 20, 2010

Post-op Day 3

We are going home!!!

Thursday, August 19, 2010

Post-op Day 2

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

Wednesday, August 18, 2010

Post-op Day

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

Tuesday, August 17, 2010

Surgery Day

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

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

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

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

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

Sunday, August 15, 2010

Enjoying our extra days

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

Wednesday, August 11, 2010

Surgery Rescheduled - God is in Control

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

Monday, August 09, 2010

Pre-op with surgeon down

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

Thursday, August 05, 2010

Approaching the finish line

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

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

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

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

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

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

Tuesday, July 20, 2010

Now we all know...

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

Friday, July 16, 2010

Monday is consult day with the cardio

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

Thursday, July 08, 2010

We have a date....

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

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

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