Home Sweet Home

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

Post-op Day 3

We are going home!!!

Post-op Day 2

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

Post-op Day

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

Surgery Day

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

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

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

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

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

Enjoying our extra days

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

Surgery Rescheduled - God is in Control

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

Pre-op with surgeon down

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

Approaching the finish line

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

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

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

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

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

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