Cardio update

This is Munc for Sarah again....

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

Fever spike. Prayers/advice needed.

This is Munc, posting for Sarah.

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

I need some sleep

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

Surprise Packages

Surprise Packages

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

First post-op checkup

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

Breakouts

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

Prayer Request

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

Homograft Surgery Pic's

We are Home!!!

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

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

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

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

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

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

You will not believe this

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

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.

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.

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.

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.