Pictures

Here are some great pictures taken by my sister Liz while she was visiting for my brother's wedding. They stayed in Utah awhile and it was so good to have her and her family here with us. Thank you so much Liz for these adorable pictures I absolutely love them! I just got these from her through email and seeing them made my day! (You can check out my sister's photography blog at redbucketphoto.blogspot.com) Thanks Liz! We love you!

A Few Pictures

Here are a few pictures from Christmas Day. I have more on another camera but don't have the right cord to download them right now. I will post them soon.

Our unique Christmas

We are experiencing quite a different Christmas this year, in the hospital. Burke is still in the PICU at PCMC and is doing really well. He was extubated yesterday and has loved having that awful tube out of his throat. Yesterday he had a great day and had quite a bit of energy and was overall happy. Today on the other hand, has been pretty miserable. He has a slight temperature and I think that was the main thing that was bugging him today. He wanted to play but he was too exhausted and didn't want to fall asleep because he was too uncomfortable. I played with him a lot and sang his FAVORITE song- "Here's a Ball for Baby". He knows all the signs to it and it is so sweet because despite being hooked up to a ton of cords and wires, he still does all the signs to that song. We have been watching TV and just hanging out.

Emma saw him today and she is the best big sister ever. She is so good with him while she is in his room. She always wants to be up on the tall chair right next to the crib so she can see Burke and talk with him and play with him. She is the best and I am sooo grateful for a child who can understand what is going on with Burke. She was with my sister Liz for the day yesterday, and they were at some friends' house and Emma was telling the friend's dad all about Burke. She told him that her mommy was at the hospital and that Burke was going to get out his tubes today. He was like what in the world is she talking about, so Liz had to tell him the rest of the story. But, for the most part Emma knows what is going on. She knew that we were sad that he didn't get his "tube" (breathing tube) out the other day. I know the Lord specifically chose our children to come to us with our situation with Burke. Emma is the best big sis and Burke is so sweet and has become very patient with all that he is going through. I just can't imagine what is going through his head. I just try and comfort him when he seems sad or scared or hurting. He is so strong for enduring what he has been through. I am grateful beyond words that he has chosen and that it is part of Heavenly Father's plan to have him stay with us a little longer here on earth. I don't know what I would do if we would have lost him two weeks ago. But all I know is that I thank the Lord for his mercy and grace. I thank him for comforting Burke when I am not there or when he is lonely or scared. I thank him for the atonement that we can feel of His love when nothing else helps.

We are spending Christmas here in the hospital. It is pretty lonely and different. It is also kind of like having an out of body experience because I never thought I would be the one to ever have to go through this. I never thought I would ever be in the hospital for Christmas. I am glad about one thing though, there are not very many people here in the PICU tonight. There are a significant number of empty bed spaces of which I am so grateful. That means a lot of nurses and doctors and surgeons are at home spending Christmas Eve with their families. Also, it means there are children and babies at home where they should be. I am happy for all those people this night.

There is a reason we are experiencing Christmas in a different place and under different circumstances. I have been thinking a lot today about why we are experiencing this, and I still don't fully understand why. But I think it is so that we can appreciate Christ and His birth and life more. So we can also cherish every moment we have with our loved ones and those around us. I am grateful for this unique Christmas, even though I would rather be in my own cosy home playing Christmas music and watching Burke and Emma entertain us in our own family room. But when I think about all those activities we do at Christmas time, there is no other place I would rather be right here and right now, because I know this is where Burke is supposed to be. Nothing else matters in life when we are dealing with the life and health of our child. Nothing else, the presents, the Christmas dinner, the traditional holiday activities, nothing. We are focusing on what matters to us in our lives right here and now, and for us it is our family. We are grateful for the progress that Burke has made. He has come so far and we are grateful for him. We love you buddy and we will never ever forget this time we have spent with you this 2008 Christmas holiday. Merry Christmas everyone and hope you all remember what is truly important in your lives!

Pictures of ECMO

These are the pictures of Burke on ECMO (the transportable heart lung machine). This was two Fridays ago, which was the day after the emergency surgery to take out the aneurysm. Here is the procession down to the O.R. It took several doctors and nurses and a lot of careful coordination. We didn't get a very good picture of just the ECMO, but you get the general idea.

Saving Burke's Life

These past few days have been a complete whirlwind. Here is an attempt at a brief summary.

Sunday, December 7th - Wednesday 10th. Burke was increasingly becoming more fussy - especially at night. He was throwing up, which we just thought was his reflux and that it was not letting up. Tuesday and Wednesday he was extremely fussy. He was beginning to look more blue and was short of breath.

Wednesday the 10th- I called Dr. Walker (his cardiologist in Boise) to get an appointment to maybe get a medication change or something. The office immediately scheduled a ECHO and a chest x-ray for that morning. We knew something was wrong, but when they did the ECHO they found something terribly wrong. What they found was a pseudo aneurysm. When they put the bigger conduit in during his last surgery just four weeks ago, they attached it from the right ventricle to the pulmonary artery. Where it attached to the right ventricle a stitch had come undone or something happened and the conduit began to come apart from the right ventricle. As that occured, blood began to leak out and formed a pseudo aneurysm. Which is a collection of blood that does not have a wall to contain itself, if just balls up in and of itself. (Google it, if that doesn't make sense.) His left lung has also collapsed because the aneurysm was pushing against the space around that lung so the lung just collapses because it could not expand. They were concerned with how long that lung has been collapsed and if it could eventually open back up again. We were admitted to the hospital Wednesday afternoon and prepped to fly down to SLC that night. Burke and I (Rachel) were flown down to Primary's that night for surgery on his heart scheduled for 7:30 am.
Wednesday night- We arrive at PCMC at about 10pm and are admitted to the PICU yet again. At this time Burke is not intubated and only on some pain meds and only had one IV in his foot. He was still very fussy and mad that he had to be in the hospital again and was trying to sit up and climb to me so that I would hold him. We held him as long as we could, but he was still squirmy. I put him back in the bed and his was out in a couple of minutes. They intubated him that night to be able to sedate him properly, because he was very short of breath by then and his sats were way low. He had an okay night. We left the hospital at 1am to get some sleep before surgery in the morning. While I was flying with Burke, Tyler and his mom got us packed and drove down all night long. They arrived here at about 4 am and got a couple of hours of sleep before we had to be at the hospital at about 7am to consult with Dr. Kouretas our surgeon.

Thursday, Dec. 11- He was taken back for emergency surgery at 7:30am. Dr. Kouretas, Dr. Hawkins, and Dr. Kaza (sp?) were all in the O.R. along with about 9 or so other people. Dr. Kouretas said this was a major major surgery and would last 6-7 hours, but we were prepped for the long haul and it ended up being an 8 hour surgery. Dr. Kouretas told us that the surgery overall went fairly well. Here is what the surgery entailed.

They wanted to get him on the heart lung machine before they opened him up to be able to have a controlled environment just in case the aneurysm should burst. So, they used the veins and arteries in his neck to attach him to the heart lung machine. That was a success and then started to open up his chest. That took extra long because there was a lot of scar tissue from the last surgery. Taking out his aneurysm seemed to go as planned and they reattached his conduit to the right ventricle using a homograph (a cadaver's artery). Next was his lung. They drained off all the fluid around his lung and all the debris in there. When they tried to take him off the heart lung machine his lung would not open up and work. They tried multiple times to take him off and were unsuccessful so they had to leave him on the heart lung machine. The transportable equivilant is called the ECMO machine and he was taken to the PICU with his huge machine for a buddy. We were pretty concerned that he still had to be on ECMO because that is full life support. That was our only option until his lung returned to working activity though. They prepped us and told us that he could need to be on ECMO anywhere from a couple of days to a couple of weeks. We already knew that it is not a good thing to be on it for very long. There are definite long term risks from being on it for more than about two weeks. We were terrified that he would need to be on it for a long time. They simple had no clue how long it would take for that lung to inflate and be able to come off the EMCO.

Thursday afternoon-Post op Burke was looking great, not bleeding very much and things looked on the uphill for the first time in awhile. ECMO was running well and not clotting. In order for it to work properly and not clot they have to give the machine heparin- a blood thinner. Since it was in the machine, the heparin would go into Burke's blood stream and his body would not clot at the site of where they did surgery and around his heart. He always comes out of surgery with three chest tubes to drain off the blood that is normal for his body to give off. But about an hour after he came out of the O.R. he started bleeding a TON and would not stop. They were constantly giving him blood to replace what he had lost and did not stop for the rest of the day and into the night. They thought it would let up and tried to reverse the heparin a little but they couldn't in fear of clotting the EMCO. Later that night Dr. Kouretas opened Burke up again to see if there was a unexpected leak or something had gone wrong and went unnoticed in surgery. They did this right in his room in the PICU. He could not find anything wrong. They equated the bleeding to like if you fall off your bike and got a road burn. The scrape would be large and shallow and be bleeding all over the scrape and not just in one spot. The surgery site was just oozing blood, but it would not stop. They said he went through how much blood several adults have in their bodies.

The bleeding did not let up until the next morning when they took him in for surgery, this time in the O.R. They had taken some x-rays post op of his lungs to see if it had inflated yet and it looked good enough to be able to take him off of ECMO. They knew if they took him off of ECMO the bleeding most likely would stop because his body would be able to clot off. They also gave him medications to speed up the clot process. This surgery was a success and his lung tolerated coming off of ECMO really well. The bleeding also subsided FINALLY!

It is now Sunday and I am trying to finish this post. Burke has had almost a complete turn around since the surgery to take him off ECMO. He has been doing great and handling everything really well. They have taken him off of the paralytic so that he can begin to breath on his own and wake up more. He wakes up more often and doesn't d-sat too much, which is a great sign that he is tolerating weans and milestones necessary to get better.

We almost lost our little buddy and we are so grateful to the Lord for keeping him here with us. He was on total life support for about 2 days until his lung could come around and work properly, and we are grateful for the technology to assist in the healing process. We are also grateful for the speed in which he was able to come off life support so he would not have other long term effects from being on it for too long. We are grateful for these nurses and doctors who know exactly what to do. We are grateful especially for Burke and his desire to stay here on earth with us. He wants to live and heal and hopefully in a couple of weeks get out and play! He is a fighter and is so strong with all that he has been through and all he is going through right now. We have a long road ahead of us, but he is getting better all the time. All we need is time, and Heavenly Father has graciously blessed us with more, which we will forever be grateful for.

Thanksgiving

We had a relatively quite Thanksgiving this year. We spent it with Ty's side of the family and there were only about 30 people there this year (which is nothing compared to the 60+ of us that it could have been if everyone were there). First we all did a Thanksgiving skit that is a tradition to perform everything Thanksgiving and it was really fun. This was the first time I had participated in it, I don't know why I haven't seen it before but it was really fun. Emma was an Indian woman and she wore a feather on a headband. Her part was to say "shhhhh" when ever they mentioned Indian woman in the skit. I was a pilgrim woman, I think that is what I was called, and I cannot even remember what I was supposed to say. I was helping Emma with her part, and by the end of the skit I think she began to get it. It was really fun. Then we all went around the room telling what we were thankful for. Earlier that morning we were trying to help Emma understand more about Thanksgiving and asking her what she was thankful for. She quietly say juice. She had juice earlier that morning. I know Emma is grateful for a lot more than that, but on that day, this year she was grateful for juice. So, when we were going around the room that day, I told them what Emma was grateful for, as she was running (loudly) in and out of the room being very disruptive. But, she is three right?

Then I began my way too long explanation of what I was grateful for. So, here is what I am grateful for this year. I am first off grateful for my family. I am grateful for Burke and his heart. I am so grateful for the way his heart is and all the good things about it. It is strong and for the most part healthy, just a lot disfigured. I am grateful especially for the surgeons and doctors at Primary Children's who performed surgery on him, who took care of him throughout the days after surgery. Those nurses are truly amazing in the PICU. They are. And we were thankful for all those who took great care of him and knew exactly what to do for him, and if they didn't they would find out and figure out a way to make Burke comfortable. We are so blessed to have Burke still in our lives and to have him recover so well from major heart surgery. We are grateful for all that the Lord is teaching us. This is our refiners fire, and I hope and pray that I can become what Heavenly Father wants me to become.


So, after everyone told us about what they were grateful for, we sang some traditional Thanksgiving hymns, and then held hands standing up around the table and prayed over our traditional thanksgiving meal. It was very traditional, and I loved it. It is so fun to see the traditions of other families. I love holidays, and traditions bring families closer. It is a time where we can bond while we perform something that is unique to just that specific family. I love the traditions that I grew up with, and I love the traditions that I am discovering about Tyler's side of the family. And I love that I am making traditions with my own little family.

The food this year was especially AMAZING! I ate so much and was full but not overly full. Jenny those roll man. They get all of us all the time. They were soooo GOOD!! And I made an Yam and apple recipe that I got from my sister in law Adelin that was to die for. Here is the recipe. It was so yummy, so thanks Adelin!

After the feast, some of us slept, some of us went home to have the children sleep, and some stayed and ate more and played games. Later on that night we all gathered back at the Johnsons and played games into the night. It was so much fun to be there, and the games were so fun. I got schooled in the pantihose ball game. Okay, that title doesn't sound very good, but I reassure you all it's not what you think. It is very G rated, okay except for the hip thrusts. No, it is this awesome game that I don't know who thought of, but you put a pool ball in old pantihose and you tie the pantihose around your waist so the ball is hanging about 3-4 inches off the ground. You are competing against another person to see if you can swinging your hips to try and swing the ball in the pantihose in order to get the poolball to hit another pool ball on the ground all the way across the room. Okay, I am not very good at explaining games by writing the rules out, but it is a TOTALLY FUN game, and I got schooled EVERY TIME!! (I think I might have won once against Martha, and I almost got her again.) It was awful! But so much fun. So, if anyone ever wants to learn that game, dispite my awful confusing directions, just let me know and we can demonstrate- it is a great one, and totally worth just watching. Anyways, I know I ALWAYS write too much in my posts. But here are a couple of pictures from that night. Burke actually for the first time since surgery came alive more. He was playing with the dog and walking and laughing. How grateful am I.He was playing fetch with Chloe who is Sydney's dog. We all had a blast watching him laugh so hard. He even wore out Chloe. Emma and her cousin Molly who is only 7 weeks younger than Emma were having a ball playing their own card game.

This is how we ended the night, with Kennedy and Emma naked watching both of their favorite movie, "Annie". We all joined in and watched too, but with our shirts on of course. What a fun night!

3 1/2 Weeks Since Surgery

It has been so long since I have written or posted any pictures so here are a few the last couple of days in the hospital and then on our way home. The pic above was right before we were discharged from the hospital. We were so ready to go home!

This was in the car on the way home from Utah. He had so much fun with the toys grandma Bates gave him-(Thanks grandma and grandpa).

I can't believe it has already been 3 1/2 weeks since Burke had his heart surgery. We have been home now for almost two weeks and I don't know where the time went. While we were in the hospital I had the time to update our blog about what was going on with Burke, but since we have been home I don't have the time or energy to update it as frequently as before. Here is an update on Burke's progress.

Burke slept a lot the first two days we were home. He slept all night long, and was doing pretty good until the throw up came up the first time. It was awful! It was bad for about three or four days just after we got home. He would somehow get gagged, and then choke really bad, that would then lead him to gasp for air and then we would hear the horrible gargling sounds inside him and he would proceed to throw up three or four times in a row. It broke our hearts. This little guy has gone through so much we didn't think he would have one more thing to worry about, especially during the recovery time after heart surgery. But, we are learning it is very common for heart babies to get reflux after surgery. He had it when he was a baby but it was definitely not this bad. We for sure thought we would get medication to control it or at least to have it not hurt him, but our Cardiologist suggested that we not do anything but wait it out. I was stunned when she told me that she wasn't going to prescribe anything for him. I was so mad. My little baby is in pain already and pretty much traumatised from surgery the least they could do it help the reflux. Wait it out, okay, I can be flexible. She told us that 9 out of 10 times you don't need to treat the reflux, it will just get better as time goes on. So, we would wait. And I can say that it has gotten better. EVery so often he does throw up everything he just ate, but he doesn't throw up everything all the time. For the most part he can hold his food down. I think he throws up when he eats too much. I just feel so bad.

He is a trooper though. EVeryday he is getting stronger and stronger. He is walking more now. I think though, he is having to re-learn how to walk. It is so sad to see him try because he is so skinny now and he just tries so hard to walk and he can only go a couple of steps before he either gets scared or he falls. I think he is scared to fall because he knows it will hurt, or he thinks it will hurt. He is awake a lot more now, and is almost, but not quite, back to his normal activities. The doctors said that it would take about 6-8 weeks for him to return to his normal self and activity level.Here is Burke Thanksgiving night and that was the first night he really came to life again. He was up for a long time and he was LOVING playing with Sydney's little dog Chloe! It was great to see him somewhat himself again. Thanks Kathy for playing with him that night he was loving it!

He is now officially completely and utterly terrified by doctors, nurses, and even the word "doctor". It is so sad. We have had two check ups with his cardiologist since being home. The first appointment I don't recall being as bad as the second. The second though, was horrible. He cried the whole time. The moment we stepped into the room he cried. Then he cried harder when he saw the doctor. It was bad. She told us that this behavior is normal for his situation though, which I totally agree with. I mean he was totally blind sighted when we took him into the hospital, he had no idea what was going to happen to him. And for all he knows, those doctors were NOT helping him, they just made him hurt so so bad. I can't even image what he is thinking. No wonder he clings to me nearly every second of the day. He probably thinks that some doctor is going to take him and cause him more pain. So, yes, he is basically velcroed to me, and it is hard sometimes, but I am glad that he can find comfort in knowing that I am here for him and will always be here to take care of him after his surgeries and here to rock him to sleep when he decides to be fussy at night. I am here and I love that I am here. The doctor also said that his age is the worst time to have surgery because they almost revert back to being a newborn in the sense that they need mom around all the time and they need the constant reassurance that I am there.

His two post-op check ups with the cardiologist went really well. His lungs looked great in the x-ray and they were very pleased to see him doing that well for all that he went through. He is slowly, VERY slowly, gaining weight. But the dumb reflux doesn't help us at all but it's okay. Here are some pictures since we have been home. I will for sure do more posts about what else has happened these past two weeks- like Thanksgiving and things like that. Until next time.Burke and Kathy (his aunt for those who don't know Kathy. But what am I saying, everyone knows Kathy, or it might be the other way around, she knows everyone. I'm not kidding, she does, right Kath?)