Merry Christmas

Merry Christmas!

Progress

Burke has made a lot of progress today. He is more calm today than yesterday by far! He was thrashing a ton yesterday but today they said he is acting more like a normal patient would and how they prefer him to act. When he wakes up he is calm and more reasonable than he was yesterday.

Milestones for today are- the LAP line is out with Burke's help! That line is measuring the pressures in his left atrium and is sewn into the skin so it wouldn't get dislodged too easily. Well, Burke decided on his own that it needed to come out this morning. So he just rolled over and undid some of the stitches! I guess it was pretty crazy in here after that. They get worried if that gets pulled out because there could be residual bleeding in his heart if it occurs. They did an ultrasound to make sure there wasn't any damage internally and thankgoodness there wasn't! There was quite a lot of bleeding at the site of the stitches so they had to give him some blood to make sure he had enough from what he lost but then also give him a buffer if it decides to bleed a lot more later. They were planning on taking out that line today anyways, Burke just wanted to get that going!

When they were trying to give him blood they found that most of his IV ports in his hands and feet were ruined in the whole ordeal. As a result they had to pull two maybe three of those out. Burke is a man who knows what he wants. They do have to put another line in for emergency situations which will stay in until we leave, but they will do that tomorrow.

They have also weaned him down on his oxygen flow which I am so glad because he hasn't been able to eat on the high flow cannula. He took his sippy cup just great! Actually he has been asking for a drink since yesterday! So, today he has taken a ton of water. He is still groggy from the drugs but he is doing great now that he can drink again. He fell asleep just a little bit ago so we haven't fed him solids yet but we will later on today. And they don't want to rush into too much food too soon.First time drinking from his favorite sippy since before surgery!

Tyler held Burke today for the first time since surgery. I went to take a nap at the hotel and Ty got to hold Burke and Burke just LOVED it! They fell asleep together and had a two hour long nap together! Total bliss!

Being held for the first time since before surgery!

So, for the really good news... they think he will probably be moved to the floor tomorrow which is one step closer to going home. And one of the doctors said that MAYBE just maybe he would be ready to go home for Christmas!!!!! I don't know if I should even say that so I won't get too disappointed if it doesn't happen, but wouldn't that be amazing if we could get out of the hospital basically a week post-op! They say that he is progressing great and there is not much more they need to do for him in the hospital.

I have been worried about if he will be able to eat enough or gain enough weight to get discharged from the hospital, but they say he doesn't necessarily have to gain weight in the hospital in order to get discharged, he just has to prove that he can stay hydrated. He loves his sippy cup so hopefully he will keep progressing nicely over the next few days and we will be out of here!! YIPPEE!!!

They also took out his feeding tube when they extubated him. I am so glad they took it out for many reasons but the main one is that they can't rely on it and just start feeds through the tube of which I am SO glad!

Like I said early they are weaning his oxygen slowly. They will take him off the oxygen all together tomorrow!! I can't even believe it. I mean that is what this surgery was supposed to do- get him off the oxygen- but I just can hardly comprehend Burke not needing oxygen. I get totally and completely excited and giddy inside to think of the possibilities for this little guy!!

Extubated!

Burke was extubated around noon today! What a wonderful thing! Look at how good he looks! He got pretty agitated afterward for awhile. He is still in between sleep and awake with all the drugs so he doesn't know what he wants nor do we. His voice is still a little horse from being intubated but it should come back soon. He did manage to get out a word which was yes. He answered a question I asked him. He is so sweet. They gave him some meds and he is now sleeping and looks really comfortable. His vitals look great and the pressures in his heart actually came down after the tube came out which all the doctors were a little confused by but can't complain.

There is some bleeding which you can see in the pictures. It is under his dressing on his chest. They took out his chest tube earlier this morning and when they were getting him ready for extubation he got a little agitated and was moving around a bit which caused the bleeding. After a chest x-ray and an ECHO to make sure it wasn't any of the lines that are sewn into his heart for monitoring purposes, they decided it was just from the chest tube. They do not want to sew another stitch to stop the bleeding because they said it would just pool inside so they are just going to watch it and change the dressing as needed. It will stop as they give him some platelets.

They also took out an IV line, his rectal probe in his bum that measured his temperature, and his urinary catheter. Luckily they did that all before they woke him up to extubate him.

That is the update for today so far. They are very pleased with his progress thus far as are we. We are still amazed with all he has been through he is doing great. We just hope and pray that sometime soon we will be able to reason with this little one as he wakes up more.He looks pretty comfy! Don't you think?

The Exodus

Since I am caught up with Burke's progress in the hospital I thought I would back track a little bit and blog about our trip out to Stanford. Here are the kids with Kyle before we left! Kyle didn't want us to go. And the kids have been missing him while we have been gone. Kyle also went through Emma/Burke/Rachel with drawls.

We thought we would take our time driving and break up our trip a little bit. The first stretch was from home to LA. We stayed with Tyler's nephew and his family for the first night. It was fun for Emma and Burke to get acquainted with Evie their cousin once again. Summer was the last time they saw her. They also loved seeing Chet their new cousin. Both our kids wanted to hold him a lot. They LOVE babies! Here is E with Chet. Thanks Jake and Grace for letting us stay with you guys!!
From LA on we decided to take the 1 up the coast of California all the way to the Bay Area. Tyler wanted the scenic route and it was sooo worth it. It was a little long, but the kids did great and it was so fun!! We stopped many times to get out and check out the coast. We saw some interesting things on our drive. We saw zebra with some cattle. Yep, that is right- Zebras just hanging with the cows! That was right along highway 1 on the land in front of the famous Hearst Castle. We wished we could have driven up to see the castle, but you have to take a tour in order to go and see it. That was an interesting historical site. And they have had some interesting exotic animals brought in to add to the site.
Next we saw these awesome Elephant Seals! Ty got out to see if he could spot any before we got the kids out, and sure enough he spotted this whole beach just full of them. It was awesome. We were only about 8 feet above them. They woke up a few times to look at us and growl at us. The kids thought they were neat. Taking this route was great for our little family. We have never really been on a real family vacation-outside of Utah or Idaho where we could just relax and take our time and enjoy the sites. It was WONDERFUL and I smiled a lot during our drive up the 1.
We stopped just out of San Luis Obispo at this great beach. We got the kids out and they loved it. Burke was more interested in the waves and the beach than Emma. She stayed far away from the water- I guess she is still traumatized from the last time (her first time) we went to the beach after Disney Land. I kind of forced her in the water so we could wash all the sand off. Let's just say she HATED it. She was basically screaming bloody murder. Poor girl.
We got Burke these cool shades for him before our trip because he is always telling me the sun is in his eyes back home. It gets pretty bright there for sure. He wore his shades quite a bit on the trip- he loves them. He used to wear Emma's- that was a funny site. E checkin out the ocean with her wild post-two-french-braids- look! Classic.
Tyler has really gotten interested in Photoshop lately. Since he has had plenty of extra time because Burke's surgery was pushed back a week, last week, he decided to play around with a few pictures he took of the ocean. He thinks it is a little too photoshopped but I think they look awesome! He has a creative mind and is very detail oriented so photoshop is a good fit for him. He can photoshop all day some days. Nice work babe! Part of the 1 is very curvy and the road is right on the cliffs and the drop is about 500ft down to the ocean. Not so much fun. Right at the begining of this curvy part both kids fell asleep and were out for a good 2 1/2 hours! It was so great. Tyler and I were able to have a normal adult conversation!

Well, we ended our trip in Palo Alto two days before surgery. He had pre-op testing the day before the surgery was supposed to happen. That day mom and dad came and got Emma and took her up to their house. She was so excited to spend the week with Grandma and Grandpa! Then that night we picked up Jan, Tyler's mom up at the airport. She came to be with us for surgery and the few days post-op. We picked her up and headed to San Fransisco Warf for dinner. It was a great night and we were so excited for surgery the next day, or so we thought it would happen the next day. Burke's face in this picture is awesome. He was in a funny mood that night.

Changing the dressing

Last night was the first time the nurses were to change the surgical dressing after surgery. If you click to enlarge the picture you will really be able to see up close the stitches holding his chest together. This surgery was different from the past in that they used stitches on the outside of his chest instead of internal stitches. These ones will have to be taken out- not fun. They also used glue to hold the top part of his chest together near his neck. It is like super glue! But overall his chest looks awesome! Burke your bone is fixed!! Before surgery we kept on telling Burke that Dr. Hanley was going to fix his heart and also his bone. I guess we told him enough times because he started telling other people that he was going to have his bone fixed, and "my heart". I love this little guy!
This picture below is just to inform everyone that we are still alive. Thank you Jan for all your love and support and for coming out for the surgery. It was great and we really appreciate it! Overall today has been okay. Burke has been waking up out of sedation quite often throughout the day and when he does he gets pretty upset. Finally, by the evening time they realized that he was probably not going to wake up any happier and that tomorrow they will extubate him in an effort to keep him a little more happier laying in bed. I have a very strong feeling that they are right!! He tries to protest everything that is going on by shaking his head and kicking his legs and feet even when his eyes are shut and totally drugged up!

So, tomorrow is the BIG day!! The doctors say he is doing great and he is looking good. We know that once that tube gets out, he will be on the fast track to getting outta here! We will post tomorrow once the tube comes out. We mostly can't wait because then he will be awake a lot more!

ECHO

Well, Burke's ECHO turned out great! They checked the function of his heart and all the chambers and everything looks and sounds great. They don't see anything wrong and will just watch the numbers on the monitor and try and keep him good and comfortable throughout the coming days and nights. We are so relieved that nothing was wrong with the function of his heart. All is well!!

Post Op

Yesterday was pretty uneventful which we are learning after going through 3 previous open heart surgeries, uneventful is the way to go. They took off the paralytic drug yesterday around noon. They thought it would wear off about an hour after that, but he didn't end up moving until late afternoon. They were not worried about him not moving for so long, it just will postpone his extubation. They thought that maybe he could be extubated late today, but he is fluid positive and they want him to have less fluid in his body before they take the breathing tube out.

He had a good night last night and this morning has been going well too. We are learning that post op recovery time is a balancing act! They change and tweek his meds frequently to keep him happy and calm. They might order an ECHO later on today because his pressures in his Left atrium sometimes creep up. They were planning on doing an ECHO tomorrow before they extubate him, but they just might order it sooner to make sure all is well in his heart. But overall his vitals are reading very well and heart and lung function are doing great. His lungs are starting to experience some fluid movement but that is expected because he is moving around more. It is good to get everything moving and working in there and as the days pass by he will eventually pee off the fluid out of his lungs.

He has opened his eyes a few times today, but he has seemed pretty agitated so we try and calm him quickly because he still has the breathing tube in and they don't want him to pull it out or to damage his throat by moving too much. So, needless to say they keep him pretty sedated. Tomorrow they will get him to wake up more and hopefully by late tomorrow they will get that breathing tube out and Burke will be a lot more comfortable with that out of his throat.

We haven't taken many pictures just because he is still in the same bed, nearly the same position and hasn't changed much since he came out of the OR. But, here are a few of what he is going through. These were taken Thursday right after they got him into the CVICU (Cardiovascular Intensive Care Unit) just after surgery.

This time around he has been way less puffy and swollen. They say altitude plays a big factor in that and also the expertise of this surgeon. We are amazed still with all Dr. Hanley has done for Burke. He only has one chest tube this time around instead of three- also due to the altitude.

Well, as I am at his bedside writing this, the doctor just came by to tell me they are going to order an ECHO to check out his heart. I don't think this is anything to be alarmed by but we will just have to see. I better go now.

A Success!

The surgery was a success! Dr. Hanley fixed Burke's heart! I can't believe I am actually writing that!! Burke's heart is now a normal working heart! They fixed everything that needed to be fixed and all went well! They expect his oxygen levels to be normal. They expect him to run and play like a normal child, no more huffing and puffing. They expect him to not need another surgery for 5-10 years!! Yeah, you read that right! Years, not months! I just thank our gracious Lord above for overseeing this surgery for I know He was there helping. We are just speechless. Totally speechless.

We will be able to see him in about 30 min. He will be intubated for few days but recovery could be quick and they don't anticipate anything going wrong. Now that doesn't mean nothing will go wrong, but just that it shouldn't. We are just grateful for this full repair surgery. It has been a long road coming. We are eternally grateful for this incredible blessing from Heavenly Father.

Surgery Has Begun

Well, we just met with Dr. Hanley. He is now back in the OR ready to open Burke up. Burke is all prepped and ready to go. The surgery can take anywhere from 6 to 8 hours. Primary's gave up hourly updates, but this hospital doesn't do that. We should hear though in about 2 hours or so if they will be able to close the hole in his heart or not. They will send word out to us when the surgeon knows what he will do. He sounded confident in closing the hole, but this morning he wanted to make sure we knew that there is still a chance that they won't be able to close the hole. We are hopeful, very hopeful.

This time taking him back into the OR was hard because we know what he was going to be up against these next few weeks. I just want him to be comforted through this time and I know Heavenly Father will do that. They gave him some medicine to make him good and happy. He was pretty giggley before I put him on the crib they took him back on. We will try to keep everyone updated. I forgot my phone so call Tyler's if you need. Thank you for all your love support and prayers during this time, they really help.

Here he is as they are taking him back to the OR. He looks good and relaxed! We love you buddy!

SURGERY...POSTPONED!!

Well, as some of you know, Burke's heart surgery was postponed on Thursday. We were all set and ready to go, I mean we were checked in pre-op testing done and in the waiting room and everything. We were just waiting for the surgeon to finish his case before Burke's and into the surgery waiting room walks the surgeon. We were so stoked. We thought he was coming in to talk and meet us before surgery. Here the moment we have been waiting for for so long was finally here, or so we though. The first words out of his mouth were, " so, we have some bad news". I just about died. Our hearts sank. He told us there was another case that needed emergency surgery right then and that they would have to postpone surgery until next week. They wouldn't have any bed spaces for a few days for after surgery so they can't do surgery until Thursday of this week! 

Our hearts go out to the family who has the teenage boy who was in heart failure to the point where he needed emergency surgery. We can't help but not be too disappointed because it was exactly a year ago when Burke and I were on a plane being flown down to Primary's for emergency surgery where Burke bumped someone else who was on the schedule. In a very small way we are returning the favor. Our hearts go out to that family.

So, our plans have changed yet again! We are now staying at my parents house where I grew up until surgery. We have been praying like crazy that Burke won't get sick this week and that his bone growth won't get infected! We are doing good so far. So we are just hanging out and enjoying some time with Grandma and Grandpa Bates before surgery. We will keep posting updates when we can. Thank you for all your prayers and thoughts during this time and sorry to keep you on your toes for those who have been waiting for an update.  Thursday is THE day!!! We can hardly wait!!!!!