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Today continued to be a good day. Anton was awake more and seemed to be enjoying all of his visitors. I got to see my sweet buddy Charlie today and his awesome Mama Trisha! My sister stayed downstairs and hung out with Charlie so that Trisha could come see Anton. I am so glad they were able to stop by. Charlie has had two bone marrow transplants and is doing so good. I had a pretty interesting conversation with Charlie about anton's leg pain and he explained to me why that happens and what it feels like when it happens to him. I was blown away by how well Charlie explained things. I love that kid! I also got to see some of our BMT family today and I was so thankful to get to spend some time with them. Anton will wake up and shake his head yes or no to answer questions. He is able to point to his stomach or knee if they hurt and is calm when he is awake. They keep weaning down on his vent settings and he is tolerating that! We have had several people from our BMT team come to check on us which I have loved. Having their support makes this process so much easier. We got to see Dr. Tolar today which I was so excited about . He was very happy to see how well Anton is doing. Blair Welsh went to the Ronald McDonald House today to hang out with the school kids. Kenya and Judah told him how much Anton loves The Vikings so he autographed a picture for Anton. Anton got pretty excited about the picture so we hung it on his TV. Anton has been wearing his Vikings hat and most of the doctors and nurses ask if he is a fan so he shakes his head yes. Then I tell them that Anton is BFF's with Sullivan, and Rudolph and he starts shaking his head yes. Cutest thing ever! So far he only gets excited when we talk about The Vikings or Power Rangers. So thankful for how well he is doing. - November 30, 2015 at 07:42PM http://ift.tt/1r2lUi4

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Facebook update from Help Anton

Hello everyone :) I probably won't post a ton today because Anton is actually doing really good! He has been awake and calm for most of the day. They are lowering the support that the vent is giving him and he is tolerating it well. And it is SNOWING!!! We are so excited about the snow. - November 30, 2015 at 11:35AM http://ift.tt/1r2lUi4

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via Help Anton http://ift.tt/1MQirzn November 30, 2015 at 09:19AM

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We had a nice and uneventful night! I slept from about 8pm until 6am and feel much better. They were able to go down on anton's Peep (the pressure air is going through the vent) from 15 to 13. Everyone has told me he is already doing much better today than yesterday. The surgeon came in to check on and look at his incision, he said it looks great. I literally couldn't believe it when I saw it. It is just a perfect straight like with no damage to his skin. It is healing so quickly too which is a miracle because none of his wounds are healing right now. He said we aren't out of the woods yet but he is very pleased. Anton started pooping yesterday which is a HUGE deal since he hadn't popped since Tuesday night and he had half of his large intestines & colon taken out. They might start feeds today at a very small rate. The surgeon said they like to do this early on to help his gut start working again. Anton is breathing on his own when he is awake and still totally dependant on the vent when he is sedated. They want him sedated and not working to breathe so that his lungs can continue to heal. Praising God for all the progress that Anton has made. For from him and through him and to him are all things. To him be glory forever. Amen. Romans 11:36 via Help Anton http://ift.tt/1Iv9Cqo November 30, 2015 at 07:00AM

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via Help Anton http://ift.tt/1PVbqkv November 29, 2015 at 06:44PM

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Facebook update from Help Anton

Busy day today. Most of the day has been spent balancing Anton's sedation meds so that he is asleep enough not to fight the vent but not so sleepy that his heart rate, and O2 drops. He also has an ultrasound of his lungs to check for fluid and there wasn't very much fluid around his lungs. We did a dressing change and it was awful. He was clearly in pain even though we gave him enough meds to knock out a horse. It took him a really long time to recover after dressing change too. His O2, heart rate , and breathing were all worse during and once we were done with his wraps. Tomorrow when we do dressing change one of the ICU doctors will be in here so they can make sure he is comfortable. The saddest thing ever is watching your child on a vent trying to cry but not being able to. He has only done this twice but both times it broke my heart. We have had a good day visiting with family, and our good friends Justin (Anton's popcorn buddy), and Barbara came to see us. A few people have asked how I'm doing and honestly I am tired (okay exhausted) but emotionally I'm feeling fine. I tend to not stress out about super major scary things that happen and then overly worry about small things that don't matter. I'm going to sleep early so this should be the last update for the night :) - November 29, 2015 at 06:43PM http://ift.tt/1r2lUi4

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They didn't end up putting Anton on the oscillating vent because he was finally able to recover. His O2 saturations are 97% and he is on 50% oxygen and 15 peep. He is not breathing on his own anymore though, the vent is doing all the breathing for him. They have no idea why he was having such a hard time breathing and it could still get worse. The surgeon came by to look at his incision and to change the dressing, he said it looked great and was healing nicely. When you are in the ICU they do rounds in the hall in front of each child's room. There are ICU doctors, pharmacist, nurses, our BMT doctors, respiratory therapist, and I'm not sure who else. It is so intimidating going out there because there are so many people but it is also really neat to listen to them talk about Anton and come up with a plan for his care. My little sister went back home today but my big sister is still here as well as Jason's parents. They just did an ultrasound of his lungs and he doesn't have very much fluid on them which is great. I will keep yall update. - November 29, 2015 at 11:05AM http://ift.tt/1r2lUi4

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They got almost all the fluid off of Anton's lungs but he is still struggling to keep his O2 up. They think he has ARDS, which basically means his lungs are damaged from all the trama his body has endured from the blood infection, to surgery, so his body isn't getting out oxygen as well as it should. He is on 80 percent oxygen, his peep is on 15 (the pressure that the air is going in). They woke me up around 4 am and there were like 10 people in here working to get him stable because he was struggling to breathe. Right now he is critically stable but if he continues to need this much support they will have to change his vent over to an oscillating vent and he will have to be paralyzed while on it because it is quite unpleasant via Help Anton http://ift.tt/1OnP4qk November 29, 2015 at 05:31AM

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This little guy woke up long enough to read six bedtime stories. He was completely calm and just pointed if he wanted something. I'm not sure how many people could wake up with a tube down their throats and not freak out but I'm so thankful Anton's sweet personality continues to shine through. What a blessing from God to be able to do something as normal as read bedtime stories, oh how I have taken this for granted so many times in the past. Go hug your babies a little tighter tonight night friends... I know they are most likely asleep but just do it :) Goodnight y'all!!! - November 28, 2015 at 11:56PM http://ift.tt/1r2lUi4

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His blood pressure is much better, heart rate is much better, but now his o2 saturations are hanging around 88% and he is breathing anywhere from 45 to 70 breaths per minute. They did a chest xray and he has quite a bit of fluid on both sides of his lungs. His is almost 2 liters positive with fluid because he isn't peeing much so they gave him Lasix to get him to go potty. He already had one good diaper so they gave him an extra does to get more of the fluid off of his lungs. They are hoping this will help to slow down his breathing and to raise his o2 levels. via Help Anton http://ift.tt/1RdXyRO November 28, 2015 at 09:40PM

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He is getting a second platelet transfusion. He was at 10,000 this morning and at 40,000 now, they want him above 50,000. via Help Anton http://ift.tt/1NUXTDn November 28, 2015 at 03:41PM

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via Help Anton http://ift.tt/1LFwkwa November 28, 2015 at 01:51PM

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They put Anton on epinephrine last night to bring up his blood pressure. Unfortunately that med restricts blood flow so the surgeon had them take Anton off of it because he wants good blood flow throughout Anton's gut. Since they took him off of it Anton is having a hard time keeping his heart rate up. He is stable but they are having to adjust his meds to try to compensate. His platelets are also dropping at a pretty fast rate so he will get a platelet transfusion today. My little sister got here last night, my older sister is coming today, Papa T and Wita just got here. Our church family here and at home have been so supportive. We are so thankful to be surrounded by so much love and support. I will keep yall updated as I know more. via Help Anton http://ift.tt/1Xyt4K2 November 28, 2015 at 10:20AM

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Anton had a good and uneventful night. His blood pressure is better today than it was last night and he is still resting comfortably. The complication that Anton had with his stomach is not related at all to BMT or EB it is just a random thing that happens but normally to babies or very young children. The staff here has been amazing. The surgeon, anesthesiologist, nurses, respiratory therapist, our BMT team, everyone has been so kind and gone above and beyond to take care of Anton and to check on the rest of us too. He will stay sedated, on the ventilator, in the ICU for a few days to give his belly a change to heal without him feeling all the pain from the surgery. Thank you to everyone who has prayed for Anton, shared updates, messaged, and called us. Even though we might not get a chance to respond to everyone we are so thankful for the love and support y'all have given us. via Help Anton http://ift.tt/1XygOZL November 28, 2015 at 08:34AM

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via Help Anton http://ift.tt/1MK2fzt November 28, 2015 at 01:37AM

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They are trying to get anton's blood pressure stabilized. It isn't critically low but it lower than it should be. They have tried pushing fluid and giving him several different meds but those things haven't worked. They are now giving him a blood transfusion to see if that will help. If this all sounds crazy it's because I am just relying information but my brain is fired so I might not have every detail right. He is resisting comfortably though so I'm thankful for that. via Help Anton http://ift.tt/1lPJYYR November 28, 2015 at 01:23AM

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Anton will spend a few days in the ICU and will remain intubated during that time. He is in critical condition but doing so much better than expected! This kid is the toughest person on the planet. Praising God our sweet boy is alive and doing so well!!! via Help Anton http://ift.tt/1Yzd90r November 27, 2015 at 11:16PM

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Praising God, I can't remember all the details but surgery is over. They removed half of anton's large intestines and reattached them to some other organ that I can't remember the name of and he DID NOT need a colostomy bag at this point. No one even thought it was a possibility that it would go this well. He is in critical condition and will be in the ICU for a few days but he is ALIVE!!!! - November 27, 2015 at 09:14PM http://ift.tt/1r2lUi4

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They just called and said so far everything is going well and they were about to start the surgery. I'm guessing that means they were able to intubate him and not give him a trach. They said they will update us in about an hour and a half so if I don't post for awhile it's just because I don't have new information. - November 27, 2015 at 08:11PM http://ift.tt/1r2lUi4

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They just took him back into surgery. They are going to try to intubate him but if that doesn't work they will have to give him a trach. Everyone has expressed that this is a major and very risky surgery. via Help Anton http://ift.tt/1Sokdcg November 27, 2015 at 07:25PM