Carter wanted to go outside really really bad. So Matt and I took him outside for a short picnic. He spent about 15 minutes in the sun and then decided it was "too bright" outside. He really enjoyed it though. Here's a few pictures of our picnic!!

   Look at the size of that rice crispy treat. Oh my!!! Carter cut the piece himself. Its huge!!! Thank you Brooke for the treats. He loves them. And apparently Scooby Doo loves them too...LOL!!!

Carter's Progress!!

  It's been awhile since I posted. Carter seems to get a little stronger every day. He begged us to play outside yesterday. And his appetite is back. He's not eating a foot long sub yet but he's getting there. He ate a corn dog, 2 pieces of pie from Grandma Berniece (thank you), a slice of pizza, fruit pebble rice crispy treats from Brooke (thank you Brooke they are delicious), and lots of other goodies yesterday. He's up walking around the house. We don't let him go upstairs. His legs are still weak. We worry he might fall down the stairs. Overall he's making progress. He plays school and his Nintendo DS all day long. He is missing his friends!! He keeps telling me he's "better".  "I can play outside because I am better." Carter has an appointment Monday morning with his surgeon Dr. Fortuna. Should just be a check up. I think they will remove the stitches from the chest tube sites. That would make him one happy little boy!!

THANK YOU!!!

 I wanted to thank everyone for all the letters, cards, care packages, and mail we received while in Peoria. Thank you Mary Saylor and the CCD class for the cards and gifts. Thank you to Carter's Growth class for all the cards and get well wishes. Thank you to the Ludwig family. Carter was so excited to see all the cards from the kindergarten and 3rd grade classes. Your package came on Friday when he was really bummed. He spent most of the day tearful wanting to go home. When the package he was so excited it turned his whole day around especially the treats...yum!!! Thank you Justin, Jenny, and family. And also a big thank you to Mrs. Reakes and Southwest Elementary. You have all cheered Carter on and your kind words and prayers have made him stronger everyday. Mrs. Reakes Carter loves the Halloween bag. He keeps it filled with all his trinkets!! You all made his day and his stay at OSF a lot brighter. He decorated his room with all the cards and spread the toys across his hospital bed. He was so proud. Our family is proud. Proud to live in a kind, loving, supportive, and generous community. Our community rocks!!! Thank you all so much!!

WELCOME HOME CARTER JO!!!!

  We made it home!!!! Carter was escorted into town by the Atkinson Fire Department!! He was so excited!! Thank you Bob Floming and Mike Davis!! Carter was so excited. Thank you!!

Going home!!!!

   No more needles.....no more lines...no more monitors. Yea!!!!

   Still waiting...... We have been waiting 3 hours to have his central lines removed. Dr.Hasslemans gave the OK for discharge at 8am and Dr. Guess was here around 10am. He removed some dressings, listened to Carter's heart and lungs and gave his OK for discharge. Hoping to leave soon. The troops are getting restless.

A good meal and a good night sleep

   FINALLY slept in a bed. After my parents arrived Matt and I took a very sassy Emily out to dinner. She really needed some alone time with us. We went to Joe's Crab Shack and feasted on some seafood. Afterwards we went back to the hospital and to say our goodnights and tuck Carter in. Grandma and Grandpa stayed overnight with Carter and Matt and I took Emily back to the Family House. I slept like a baby. Minus the pregnancy leg pains, it felt wonderful. We are well rested and ready  for discharge day!!!

Saturday night visitors....

           Sitting here looking out the window. It's a 4th floor view from the Pediatric Intermediate Unit. Carter and Matt are sleeping all snuggled up in Carter's hospital bed. We are all down in the dumps waiting to go home. And then I see my parent's black SUV pull into the parking garage!! Yea!! Grandma, grandpa, and Miss Em are here!! I am really missing our life back home. I miss my family and friends so much. I can't wait to see everyone!! Hopefully less than 24 hours until civilization!!

Ugh......1 more day

    Carter's doing OK. Not much change from previous days. He was so happy last night. He was giggling so hard he couldn't stop. He walked all the way down the hall twice yesterday. He was very tearful this morning. He was crying because he misses Emily and he misses home. We thought he was going to get discharged today but the doctors felt 1 more day would be best. He's not eating or drinking much. If he eats and drinks we can go home tomorrow. Carter's OK with going home tomorrow as long as grandma, grandpa, and Emily come up to Peoria for the night. So now he's eagerly awaiting there arrival. Hope everyone has a great Saturday and I hope to have great news for you tomorrow!!!

Snuggling

   My snuggle bug is back!!!

Funny faces

   Carter laughing and having fun!!!

Friday afternoon

    It's been a cloudy dreary day here in Peoria. Its raining pretty hard right now. You can hear the rain hitting against our 4th floor window. I hope its not raining back home. I will pray for sunshine in Geneseo for all the homecoming festivities!! Go Green Machine!!!
      We have had a relaxing day here. Dr. Fortuna stopped in early this morning. He said Carter will probably be discharged tomorrow or Sunday. Carter has pooped twice...I can't believe how exciting pooping has become here. I guess when you don't poop for 10 days it becomes a special occasion. They are going to stop Carter's IV fluids tonight. So we are hoping his central line can come out tomorrow. They also did an echocardiogram today. We haven't heard the results but no news is good news here. They always do an echo before discharge so they probably did it today instead of the weekend. I am sure it was just routine. He also has a chest xray daily. Doctor said cray is better every day. The last 2 nights his oxygen levels have dropped into the 70-80% range so he has needed oxygen during the night. The doctors are not concerned about it. I hope that gets resolved before we come home. And thinking about home. Oh man do we ever miss our home. We can't wait!!!! 11 days has been enough. I can't believe we were here 34 days when Carter was born. How did we ever make it through? The walls are starting to close in on us. On the brighter side.......this could be our last night. Yea!!!!!

We are on the home stretch!!! He did great today after they removed his chest tubes. All he has to do now is drink his fluids and poop!! We could be coming home as early as tomorrow. Of coarse no word yet from the doctors but the nurse dropped by some discharge instructions. That is a great sign!!! Thank you for all the cards, packages, and prayers. We are so blessed. Thank you all so much!!

Is it day 10 or 11? Must be 11.....

 Hooray!!!! We are one step closer to being out the door. They just removed Carter's chest tubes. Man were they huge. They were adult size tubes. No wonder he didn't like to drink or walk. Ouch!!! They sedated him with Ketamine in order to remove the tubes. He was high as a kite. The things he was saying was so stinking cute. He kept telling us how much he loved us. He is just now coming out of sedation and he says he is starving. He wants pancakes, waffles, starburst and everything in between. The doctors have told us that once the tubes were out we would see major improvement. I am  hoping to be discharged either Friday or Saturday. They said the only thing keeping him here now is his fluid intake. He only had a few sips yesterday. He has to drink lots and lots today which they think won't be a problem with the tubes out. Yea!! He is one happy boy today!!!

      Carter eating "salty" chips. I am in shock. I really didn't think we would get to this point. He had such a major surgery and many critical days that I could not see this day coming. In just 24 hours he has made a complete turn around. I am so overjoyed. I seriously can't wrap my brain around the last 9 days and all Carter and our families been through. Grandpa Pete and Great Grandma Pat visited today. They played several games of UNO. Carter is quite the card shark. He even wants to do homework again!! I love it!!!!

Carter Walking - Day 9

 

Yay Carter!!!

Day 9....

Great news!!!! The xray looked much better. Dr. was very happy with the xray. He wants Carter to walk as much as possible today and eat lots of salty foods. He said McDonald's french fries would be perfect for Carter. Now that is odd coming from a Cardiac Surgeon. It's always a low sodium diet....LOL. The reason for the salty foods is Carter's sodium is low. Not low enough for them to treat but they are hoping a salty diet will correct the problem. If everything goes well Dr. Fortuna said he will remove the chest tube tomorrow. Carter just walked around the department with Grandpa Pete. Way to go Carter! He is doing great. Again I can not thank you all enough for your support and prayers. Will post a picture and video of Carter's progress soon! Thank you all so much!

  Tonight we celebrated grandma's birthday!! Carter LOVES birthdays. After sleeping most of the day he had just enough energy for UNO with grandma, grandpa, and uncle Cat. He also made a birthday card, sang happy birthday, made up a song and dance, and ate a piece of cake!! I am so proud of Carter. He walked in the hall 3.5 times. We are only counting half a walk because he just barely made it out of his room the last time. He hates the walking. It has to feel miserable. It looks miserable. With the chest tube dangling and his central line and monitors, I am sure its painful . Please pray that Carter's xray looks better tomorrow. It is crucial that his lungs do not get worse.

Event Reminder: Bowl-A-Thon Registration

Hello Everyone! I'm sorry to interrupt the wonderful updates on Carters progress, but I wanted to be sure to remind everyone that the deadline to sign up for the Bowl-A-Thon on October 6th, is fast approaching. If you have not already registered your team, please do as soon as possible.  We hope you can make it to the event and support our super dooper hero!

For more information, or if you have any questions, please e-mail: teamcartercares@gmail.com

Thank you!!

Jennifer, on behalf of the Team Carter Benefit Committee

   Carter walked in the hallway while I was at the Family House. He made it into the hallway and about 3 rooms down. Not to bad considering he's been in bed for 7 days. Wow. Where did the time go? I can not believe it's been a week since his surgery. It seems like a faded memory. I must be blocking out most of last weeks events because it's hard to imagine what last week was like. Anyways, Carter's walk wiped him out. He feel asleep right after his walk and has been sleeping for the last 3 1/2 hours. They took his oxygen off during the walk to see how he tolerated it. Matt said his oxygen levels dropped into the mid 80's. We were hoping to wean him off the oxygen today. He is going to have to get stronger before he can be weaned off. He is down to 1 IV medication...yea!! And chest tube is doing great. Definitely coming out tomorrow....yea. He is making progress. I guess I didn't realize how weak he would actually be. I didn't realize that transferring to the chair from the bed would exhaust him. Don't get me wrong, baby steps are just fine. But I thought being a nurse and having been through this before had me prepared, I was completely wrong. Each day is a new day!! 1 step at a time my little buddy!!

Great Progress

   Well after sleeping most of the day yesterday and through the night Carter looks great today!!! The end of this roller coaster ride is in sight. I can feel it. I feel so optimistic today. He had 1 tiny episode at 3:30 this morning. Carter got swolled up by the big bed and several large pillows. This normally wouldn't be a problem but he can't lifft himself up or move around by himself. I was woken up by his alarms and lots of coughing (he is full of mucous). When I got to him his oxygen levels were low because his oxygen had fallen off and he as stuck flat on his back. With a little help from the charge nurse he was soon back to sleep. Definitely need to remember this. I think I learned a lesson and some do's and don't's for home.  Happy birthday to my mom!! Carter is so excited to see grandma and grandpa Cathelyn tonight. He promises to sing happy birthday! We probably wont be able to hear him since his voice is still so soft. We keep working on getting his voice back. All those times I told him to be quiet and now I would give anything to hear his loud voice again. Right now his voice is soft and sweet. Its really cute. I kind of like it. It would be nice when he fights with his sister or when we are in church. It probably has something to do with the breathing tubes and possibly the oxygen.
  Overall Carter has made huge improvements in the last 24 hours. They stopped his IV blood pressure medication. Dr. Fortuna and  the team rounded this morning. He is very happy with the drainage from the chest tube. If the drainage  continues to taper off like it has the plan is to remove the chest tubes tomorrow!!!! Carter's lungs are both "collapsed" in the lower bases. They have weaned his oxygen down to 1 liter. Dr. Fortuna says this is not a problem. Today he wants Carter walking walking walking. Hopefully he has enough strength. It took everything out of him just to sit in a chair yesterday. It is amazing how quickly children can recover. Carter actually ate breakfast today. He had half a slice of french toast, 2 slices of Bacon, and a few grapes!!! We are so happy!! I finally  left the hospital this morning. I am at the family house. I took a nice relaxing shower and I think I am going to lay down for an hour and take a much needed nap. Matt came to the family house during the night so we have traded spots. It feels so refreshing to be outside. Its a beautiful day and Carter is doing great. I couldn't ask for more. We are so blessed. I read in a book that in order to receive a miracle......you have to believe in miracles. You can bet I am a believer! Carter is a miracle. He is our miracle!!

Finally got to sit with my baby. I couldn't even kiss him for about 4 days. Since his arterial line came out today Carter's nurse thought it would be OK. Being close to him feels wonderful. I can't wait until the day he can sit on my lap. Or sit on the couch and watch TV with me. Or walk down the sidewalk holding my hand. I have a feeling it won't be long!!!

12PM UPDATE

Thank God Dr. Fortuna (Carter's heart surgeon) is back!!! They did rounds around 1000am today and he is happy with Carter's progress. In fact he wasn't happy that Carter still had a femoral arterial line and an IV line in his left arm. He told the other doctors that the central line was good enough. So he had the nurse remove the arterial line and the IV!!!! Also the doctor last night wanted Carter to be woke up every hour throughout the night to do his coughing and deep breathing because the fluid in his lungs is getting worse.  Of coarse today he is exhausted and has slept most of the day. Dr. Fortuna was not happy. He said he wants Carter to sleep during the night so we can get up during the day. If he's up during the day and moving as he heals so will his lungs. He is not at all worried about the fluid at this time. It was a long weekend. I hate to say it but the weekend staff just doesn't take care of business like the A-team. And maybe I lost faith after the breathing tube incident on Saturday that I haven't gotten over yet. Or the fact no one changed Carter's sheets, pajamas, gave him a wipe down, or brushed his teeth all weekend. Last week those nurses had him turning in bed, changing gowns and linens daily, and did oral hygiene daily. After seeing the staff today and the care Carter is receiving today, my faith is restored. He is getting better. I finally see a light at the end of the tunnel. Today he is requesting chicken nuggets and french fries from McDonald's. After lunch we are going to clean him up. Since his arterial line is out the nurse said I could put underwear and his own pajama pants on. It he wakes up a little bit more and feels up to it he may be able to take a walk. Way to go Carter. God has heard all prayers. Matt and I are so thankful for all your thoughts and prayers. Without the support of family, friends, and community we would never have gotten through this. The power of prayer is a magnificent thing. Carter is a true miracle. Keep up the good work buddy. You are doing great!!!!

9 am update

Yea!!!! Carter is out of bed. They let him sit up in a chair this morning. He really wanted out of bed. It took all the energy he had. He's very uncomfortable and wanted right back in bed. But its progress and each time will get easier. Carter kept his subway down. He had about 5 bites. He was super excited though. He's not hungry yet today. He is just so exhausted. Doctors should be rounding shortly.

SUBWAY!!!!

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     Carter had a pretty good afternoon. As they say no news is good news. We never received the results of the echocardiogram they did this morning after discovering fluid around his lungs. I guess the doctors are hoping the Lasix will fix that problem. He had lots of visitors and now he is exhausted. But he did sing Ghostbusters and Scooby Doo theme songs in his quiet little voice. We keep making him yell in order to expand his lungs, but its still a soft little yell. At least he's trying. I have video of him singing and will post it later. The day shift nurse promised him Subway which is his favorite. I can't believe they are allowing it. In 6 days all he has had to eat is 1 cup of jello and a few Graham crackers. He wants it so bad that his eyes fill up with tears every time he talks about it. Subway sandwich has been pretty much the only thing he's talked about all day. He started crying (which is just tears since it hurts too much to really cry) earlier and I asked why. He pointed outside and said "it's dark.....now I can't have subway". Matt left at 8pm in search of Subway. He knew where 2 subways were located and of coarse both were closed. The nurse called around and finally found an open Subway near Bradley.  I just received a text from Matt it read......SUCCESS. YEA....45 MINUTES LATER AND A SUBWAY SANDWICH IS ON ITS WAY!!! It will be an even bigger success if he keeps it down without getting sick. I will keep u posted. If he can eat a sandwich after all he's been through this week then things will definitely be looking up!!!

No changes from Dr. Geiss. They gave Carter IV Lasix to remove the fluid from around his lungs. He is really weak but he's had no nutrition since Monday. They just started him back on Gatorade. He's not talking and breathes really shallow. We are trying to get him to talk in hopes it opens up his lungs. He loves subway. He asked for a subway sandwich and when we told him not yet tears rolled down his cheeks. He stuck out his lip. It was so cute yet so very sad. I can't even imagine what he's been thinking. Especially after the breathing tube incident yesterday. He's going to hate us forever. At this point I hate the fact I brought him to the hospital. 1 week ago he was laughing, playing, running, and having a great time with his friend Camden. We could definitely use something positive today. Just a little hope would be nice.

Sunday update....9am

I have a really bad feeling again today. It seems like things are not progressing. Dr Geiss is coming in which isn't a good sign. We do know from the chest xray he gas fluid around his left lung. Please continue to pray. I will update soon.

24 Hours After 2nd Surgery

   Carter has been stable. Spent the last 12 hours resting. I brought some stuffed animals from home because the surgeons office suggested stuffed animals and favorite blanket. Well Carter doesn't have either. He doesn't have a favorite animal or blanket. Well that has change. He know has 6. And they don't like to be covered up by blankets. Carter says they can't breath under all the blankets. We brought Emily's frog Fribbit. His Beanie baby bird Birdacaine. Then he received Salty the seal at the surgeons office the day before surgery. And Tdore whhich is actually Theodore the Chipmunk came from Jess and Brooke. All his nurses take great care off his friends. Last night Nurse Amy added 2 more to the group. I found it cute that he has become attached to these animals and they have kind of taken on a life of there own. I think it's probably a way for him to cope and also a way to play without using any energy. Here is a picture of Carter and all his friends. He had to have the nurse place them just right.

Saturday Night.

  Carter is doing bettter with the breathing tube out. Voice is super soft so he doesn't talk much. Which is ok because he really sleepy.Tonight is all about resting and recovering from today's surgery. He asked Matt and Nurse Amy if daddy could lay in bed with him. He was excited that Nurse Amy gave her approval!!!

Postop update 6pm

   The last 2 hours were awful. It was torture for all of us to watch him fight the breathing tube. He fought so hard that his blood pressure went sky high, his heart rate went sky high and he kept chokinng on the tube. After all that the breathing tube has been removed. Vital signs are stable. And Carter is resting peacefully!!!! After a rough day I am extremely hopefully things are going to improve from here!!! Thank you all so much for your prayers!!!

Postop update 3pm

  Carter is back in his ICU room. He is on the ventilator still. They have begun weanling him off. They just want to make sure he will be able to maintain good oxygen on his own. They are not sedating him though which is awful. He cries tears and tries to fight but they have him restrained. He gestures to us that he wants the tube out. It is heartbreaking but we are trying to keep him relaxed!!!!

   Dr. Geiss just spoke with us. Carter had a blood clot over his right lung and on top of his heart. He removed the clots and cauterized the small areas of bleeding. The clots had gotten larger and depressed the lungs. So unfortunately he had to come back with the breathing tube until his lungs improve and his oxygen levels improved.

    They took Carter to the OR at 8am. We just received update that they are finishing. Doctor will come and update. As we know it could be hours of waiting but I will update as soon as we hear from Dr. Geiss

One last blog before surgery. This is going to be one hard day. I don't know what to write. Carter did well through the night. He slept through the night. The nurses are telling Carter now.....

Returning to Surgery in the AM

Well after having a rough afternoon Carter seemed to turn around after the blood transfusion. But Dr. Giess was here about 30 minutes ago and told us Carter needed to return to the operating room tomorrow morning. They have Carter scheduled for surgery at 8am. The bleeding has not slowed down and Carter has developed a pocket of blood in his chest cavitity. They will open the chest back up and "clean up" the chest cavitity. Dr. Giess will remove the pocket of blood and make sure all bleeding is controlled. He said it wouldn't be a long surgery. He also does not have to work on the heart so I am assuming they will not have to stop the heart. He will have the postop chest pain again like he did on Wednesday. He probably will not come back to the ICU with a breathing tube but there is a slight possibility. Mentally I understand this is minor compared to what Carter went through on Tuesday. But I can't believe how in an instant life can change. I can't believe I have to let him go with Dr. Geiss and the OR team again. It's knowing what he has to go through that breaks my heart. He has no idea this is going to take place. He has no clue what any of this means. He is an innocent 7 year old boy who could really use a break. He is the sweetest yet strongest person I know. He definitely has a purpose in this world. I just wish he didn't have to hurt so much. Please continue to pray for Carter. He could definitely use your prayers and positive thoughts. Please please pray for him........

    Dr. Geiss was just in. He didn't say much about the echo. The valves and conduit look good. There is an area were the blood accelerates through the pulmonary artery but they didn't seem concerned.  It's not whats causing the bleeding. The main concern was blood collecting around the heart and there is no blood around the heart...yea!! Dr. Geiss wants to continue measuring the blood overnight and he will be back in the morning. So I guess no news tonight is a good thing.  We do know there is no emergency at this time. He looks much better after receiving a unit of blood. His lips are pink again!! Grandma and Grandpa Cathelyn just arrived and Carter has already beat them in a game of Uno. Nothing to eat or drink again tonight....maybe tomorrow. Tonight we need to pray that the bleeding slows down and  tomorrow we can focus on recovery.

   We just received an update from Carter's nurse. They have consulted with the cardiac surgeon.  Dr. Fortuna is out of town until Sunday but the head surgeon who trained Dr. Fortuna is covering for him. He is an excellent elderly gentlement with years and years and years of experience. He is actually the doctor who brought pediatric heart surgery to Peoria. Dr. Giess is currently in surgery so they have ordered an echo and a chest xray. When he is finished with surgery he will be up to speak with us and give us the results. We will definitely know what is going on at that time. They are here at the bedside to do his echocardiagram so I will post again after we see Dr. Giess.

   Carter's hemoglobin results came back. His count was 8.2 so they are giving him a unit of blood. They are worried about the bleeding. They will be in shortly to do an echocardiagram and we will now more then. Thank you for your prayers. Since my last post the bleeding has slowed down a bit and he is a sleep resting comfortable. The prayers are working. Thank you all so much!!!

Rough Afternoon

  Please pray for Carter. He is having a rough afternoon. He is no longer complaining of pain but he is extremely pale and has been losing a lot of blood through his chest tube. They took some stat blood tests and we awaiting the results. They also ordered some blood for a possible blood transfusion. He can no longer have any food or drink in case they need to do a procedure. They believe there is still some internal bleeding that should have stopped by now. I will keep you updated. We are extremely worried and in need of some positive thoughts and prayers. Please pray for Carter......

   The pediatric intensivist and the nurse practitioners did their rounds and stopped in to go over the plans for today. Carter's blood pressure was high yesterday so they had to increase his IV blood pressure medications. They did start him back on his oral blood pressure med. If they can wean him off the IV Med and the oral BP med works well to keep his blood pressure under control then they are hoping to remove his arterial lines tomorrow. He can not get out of bed until the arterial lines are removed. His xray also showed a pocket of fluid near the chest tubes so they are sending the xray to the surgeon. So we will find out more later. He is also getting a lot of blood out of his chest tubes so they are closely monitoring those. Overall no major complications. These are all things that can be fixed. He definitely made it through the worse part. He lost his perkiness from this morning. He's having pain again and is tired. He did have a jello cup and some a little bit of Gatorade. Today's just more rest, cough and deep breathing, and lots of fluids!!!

9/14/12........It's Friday.

3 days postop. Carter seems to be in better spirits today. He slept well during the night and seems to be more comfortable today. The doctors haven't rounded yet this morning. The ICU is packed so it could be awhile until the docs make it to our room. They did try to wean Carter off his oxygen but his oxygen levels kept dipping so he's back on a very very small amount of oxygen. Platelets haven't recovered from surgery. They are still low at 49. The other concern is his chest tubes. They have been draining a lit of blood over the last 24 hours which isn't a problem just means he is still bleeding inside and not clotting. It's not a problem because eventually he will. But they might have to put medication in through the chest tubes. We will learn more when the doctors round. I will keep u all updated. Thank you!!!

  Carter has been sad all day. He doesnt want to drink his fluids. He doesnt want to talk. He has been resting most of the day. He says it hurts to move. He did have his foley catheter removed this afternoon. Meg and grandpa Pete came to visit. Meg and I had a great visit. Thank u Meg for the gifts and treats!!! Carter also received a care package in the mail from his friend Will.  He was so happy to receive mail. He said he couldn't wait to get back to school to thank Will. So he thought writing him a message would work for now. We took as picture of his message and attached it below. Lisa could you please show Will the picture and give him a big hug from Carter.Thank u so much for the package. Your thoughtfullness is deeply appreciated!!!

   Carter getting his teeth brushed by his favorite nurse Jeanette. She takes wonderful care of him. His breath was AWFUL!!!! Carter is extremely sad today. I guess yesterday was the honeymoon phase. Today Carter's having a bit more pain. Pain in his back, hips, legs. He's even having gas pains. Plus he's tired of being in bed. He's not talking. Very quiet. He is just plain SAD!!!

9/13/12

  Carter still continues to do well. He hasn't moved since last night.  He finally got comfortable and slept for a few hours. So far today he doesn't want to talk and he doesn't want to move. I think he's catching on that they cause more pain.  Temperature is down and pacemaker is good. Today is all about coughing and deep breathing to prevent pneumonia and rest in between. Matt finally got some sleep last night. I an doing well. And Emily is back at Growth and preschool today. Everything is good.........it definitely could be a lot worse!!!

  Dr. Fortuna Carter's  surgeon stopped in late tonight and tweaked Carters medicines a bit. He removed a large amount of blood from Carter's chest tube drains. The blood return in the drains had inceased for a few hours but is slowing down again. Which is not abnormal. They also do blood work every hour or so at the bedside and Fortuna said his hemoglobin was low so he received a unit of blood. His temperature was up also. It was 101.0 but after some medicine is now 100.3. They also increased pain meds.....yea!!! So he is taking a nap. Daddy is also napping and I think its a good time for me to rest too!!

Faith

       Carter is having a rough night. His vitals and heart function is fine but he is in a tremendous amount of pain. He just keeps whispering "my bones hurt" but he wont really complain.st It's like the silent heart breaking cry. I just want to hold him in my arms and take all his pain away. He told Matt and I he doesn't want to have pain because then he won't be brave. He is so strong. We are trying to calm him so he can rest a bit. I received an email today from Carter's teacher. The words were so powerful. In fact I received the email a few minutes ago when I really needed it most.  Thank you Mrs. Reakes. I hope you don't mind me sharing but this really hit home for me. Thank you so much!!

 

Almost 24 hours postop....

   Carter is doing well. A lot better than anticipated. He listens to the nurse and even though it hurts he tries to cough and deep breath for her. He us doing great with ice chips and he has had a few sips if water. Blood work and vital signs stable. All tubes and catheters draining well. He has some arterial lines, chest tubes, and other catheters and monitors. He is not restrained and tolerating all the cords like a trooper. They finally put him in some hospital pajamas. He is extremely weak and exhausted. Spent most of his day sleeping. When he is awake he complains of pain and thirst. His voice is also weak. We are having problems understanding him. Due to the breathing tube his voice is weak and hoarse. He moans most of the time. The 3 words he is speaking frequently are "drink" "thirsty" "ouch". I can't even begin to imagine the pain he is feeling. He has to be the toughest person I know. It's painful for adults who understand and anticipate that they will have pain....unfortunately he doesn't understand why he hurts so bad. He didn't understand what the word "surgery" meant. Since we packed our suitcases and stayed overnight in a hotel, he thought we were going on vacation. And then he wakers up feeling so miserable. He really is a trooper. Even though the pain us awful, he has been extremely lucky. He has had minimal complications!! Sorry I haven't updated much today but my mind is pretty foggy. Thank u all so much. We have the best family, friends, and community!!!!!

9/12/12: Afternoon Update

He wants to go home and really wants his ice chips and is unable to get comfortable. He is talking and alert and is in pain. But seems to be in good spirits for everything he has been through. Kim and Matt are holding up as well. Tired of course. Miss Em is a happy camper now that she got to see her brother. His visitors included Grandpa Pete, Uncle Cat, Grandma and Grandpa Cathelyn, Miss Em, Brooke, and Jessica.

Carter is awake and drowsy. He is actually doing very well. It willl be a hard day 4 him. 2 steps forward....1 step back. Blood pressure is stabilized. He does have pain. But he is listening to the nurses. Thank u all 4 your prayers. The power of prayer is awesome!!! Thank u!!!

Currently having blood pressure problems. Every 5 minutes he is receiving medication to raise his blood pressure. Pressure critically low. They thought it was due to sedation but they have used reversal agents without success. They have removed breathing tube and that is going well. But they can't get him to wake up.

<p>They are pulling the breathing tube because Carter's having some blood pressure issues. When sedation starts to wear off he fights the tube and of coarse they have him restrained...which makes him fight more and his blood pressure goes up. Then they give him sedation and his blood pressure drops too low. Other then he's doing well.

I went back to the hotel for some sleep and as I was in the shower my phone rang. Matt sent me a text saying Carter had been communicating with him through the night. He was nodding his head and even waved at Matt. So they are removing the breathing tube!!!! In my way there will post soon.

Surgery day is coming to an end

Carter finally made it to his room after 8pm. He is doing well. Carter will have a breathing tube over night. Hopefully he will come off the ventilator tomorrow morning. Hes on the ventilator so he can get some rest and remain sedated through the night. He was having some complications with his pacemaker coming out of surgery. That was the cause of the delay. He is dependent on his pacemaker again but that could be temporary. I have lots of other news about how the surgery went but I am exhausted. He actually looks pretty good for just having a 10 hour surgery. Please pray for a good night and I will talk to you all in the morning. Thank you all for you prayers and support. We are truly grateful!!!

Still no word!!! We have been sitting her 4 almost 3 hours. Please please please pray for Carter!!!!! We are unsure of what is going. We are completely in the dark. We were so happy 3 hours ago and now we are hitting rock bottom. Please pray for Carter!!!!

Well the chaplain jumped the gun. Carter is not out of surgery yet. They are estimating 15 more minutes.

Sorry spell check is on......his dr is dr.fortuna not dr.fortunately. We are still waiting for him to come and speak to us. Hopefully I will have an update soon!!!

<p>We have just been moved to the Meditation room.....we are finally out of the waiting room!!!!! We are waiting for the cardiac surgeon to come in and discuss the surgery. They are moving him to ICU!!! Thank you for all the love and support.....please continue to pray and I will update after we talk to Dr. Fortunately.

They are closing the chest!!!!! He is off bypass. Yea.....he is off the heart and Lung machine!!! His heart is beating again!!!!!!! God has heard our prayers!!!!!!

4pm update:  They are actively warming Carter's body and replacing his pacemaker generator. As awful as the process sounds I am thankful I don't know what actually happens behind those operating room doors. Even the nurse in me has no desire to know. The good news is..........we are nearing the end!!!!!

3pm update: They are still working. And we will be updated again in 1 hour. They said the next step which is a ways down the road would be to start rewarming his body. I finally got some fresh air. The girls are playing cards, matts playing Carter's DS, grandma Pat's working in a puzzle book, the rest of the family is chatting and coloring with Emily. Its been a long day but we are more than half way through!!!!

Recent update: They are working away. Didn't give the Sister any other information. So I guess so far so everything is progressing. Still waiting......

Just received an update. Carter has been on bypass (which is the heart lung machine) since 10:15am.

No recent updates......still waiting. Last update was around 9:30am. Hopefully we will have some news soon. Thank u!!

  Carter was taken into the operating room right at 8am this morning.  They said they would give us the 1st update when the incision was made. Carter was such a trooper. He didn't even notice they were wheeling him away from us. They gave him an ipad with angry birds and his eyes were fixated on the game. I will update soon. Thank u!!

Surgery day

Carter was taken into the operating room right at 8am this morning.  They said they would give us the 1st update when the incision was made. Carter was such a trooper. He didn't even notice they were wheeling him away from us. They gave him an ipad with angry birds and his eyes were fixated on the game. I will update soon. Thank u!!

We were just updated that they have started the surgery. 9:35 am

somewhere out there - Linda Ronstadt and James Ingram(with lyrics)

            As some of you already now, I love to sing. I think I was related to Madonna in my former life. Anyways with both my children I have a song that I randomly started signing to them at birth and every night the tradition has continued. Carter has his song and Emily has her song. In fact, if I don't lay with them or rock them to sleep, they will ask me to come and sing "their song". Carter's song I picked from a movie I loved as a child. When I was in junior high the movie Fievel An American Tale came out and I went to Central Theatre to watch it. I have loved "Carter's song" ever since. So every night (or at least most nights) I sing this song to him. I wanted to share it with you all tonight. The song keeps repeating over and over in my head. As I rock my son to sleep and lay here watching him I pray this is not the last time I will get to sing him his lullaby. I love you Carter Joseph. You are my world. I promised to protect you and unfortunately it is now out of my hands. All I can do is pray for you. May the Lord bless you and keep you safe. Mommy will be right here waiting for you.....

Waiting...

  Carter and I spending quality time together reading books. We have finally checked into our hotel. We toured the ICU this afternoon. The hospital has changed so much since Carter's last surgery. He really thinks we are going on vacation. He is so excited. Grandma and grandpa Cathelyn, grandpa Pete, great grandma Pat, Uncle Cat, and Emily are on there way here!! Looking forward to seeing familiar faces!!

Less than 24 hours....ugh

  Waiting to see the doctor. Carter has several preop tests today. He is very nervous today. He keeps asking to go home. I think he is finally realizes this isn't a vacation. He is trying so hard to be strong!! Gotta love his courage!!

Blood thinners.....

   Well Carter had to stop his coumadin on Friday. Unfortunately he was started on lovenox injections. He gets 2 shots a day for 2 days. Lets just say the first one didn't go over so well. I tried holding him while Matt gave the injection. He is one strong little boy. 20 minutes later and Carter finally had his medicine. There is a possibility that after Carter's surgery he will not require blood thinners!!! It depends on whether they use a cadaver valve a another mechanical valve. We total left that decision up to the surgeon. It wouldn't hurt my feelings if he came home Coumadin free.  Ya.....that would be wonderful!!!

Team Carter!!

         Here is a picture of Team Carter. Team Carter is a group of our friends who have been working on a fundraiser since the day we found out Carter would need surgery. They have pulled together and worked day after day on spreading the word. This picture was taken at the Atkinson Heritage Day Parade on August 25th, 2012. Team Carter beat the heat and walked the parade passing out flyers. I am so thankful for Team Carter. I believe God brought you into our life for a reason. You are always there for us and you have kept our minds off of the surgery. I know there is nothing you wouldn't do for our family. We are truly blessed to have you in our life!!! You have kept our family smiling during a very uncertain time.  Thank you Team Carter!!

As I was dropping Carter off at school today I reminded him it was his last day of school for awhile. I told him to give his teacher a big hug. He said "I will give her a hug, my friends a hug, Mr. Moe a hug, and anyone else I see today". He started laughing and ran inti school. Holding the door I believe was Mr. Moe but it could have been his principal. Either way....he ran up to him and gave him a hug. Carter had me laughing. That is just like him. He is so full of life. It was one off those moments when I was smiling yet could have cried at the same time. Priceless!!!!!

Happy 7th Birthday Carter!!

On August 20th, 2012 we celebrated Carter's 7th birthday. We celebrated with a 3 day extravaganza. Carter had a blast!! We wanted it to be special since he will miss out on so many activities over the next few months.  It is so hard to believe that 7 years has passed. I promised myself that I would never say "time flies". But come on....7 years already? It has been lots of fun and we have made many wonderful memories. Of coarse there has been some struggles but I wouldn't change a single moment. Looking at Carter and seeing him smile makes it all worth while. Love you so much Carter Joey!!

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August 2012. Carter's first day of 1st Grade!!!

Carter loves school. I had to post a picture of his first day of school. This has been the center of his world over the last couple of weeks. He loves being in 1st grade!! He wakes up so excited to go and when he comes home at night he plays school until bedtime. He pretends to write books. He has several notebooks that he currently writes "stories" in. Most of his notebooks contain Scooby Doo stories that he has made up. Maybe one day he will be a journalist. As much as he loves movies and writing, I think he is on his way to writing a screenplay...lol.  I hope this passion for writing, reading, and school continues.  At least it will keep him busy over the next month or so while he recovers from surgery.  He is really going to miss school. Unfortunately we have no idea how much school Carter is going to miss. We have lots of projects and "homework" planned to keep him up to date with his class. He will also receive tutoring once he is feeling up to it.

Hello everyone. This is my 1st time blogging from my cellphone. I wanted to make sure it worked. We are starting to get things ready for Carter's surgery. We have been busy living life to the fullest and now its time to start focusing on what lies ahead. Please continue to keep Carter in your prayers. Thank you, Kim